Gerson protocol

Another irresponsible breast cancer alternative cure testimonial

oracknows — Thu, 17 Sep 2015 06:30:09 +0000

Another irresponsible breast cancer alternative cure testimonial

It just occurred to me that Breast Cancer Awareness Month is fast approaching, not the least of which because I did a Komen event last night as one of the breast cancer experts. I sometimes wonder if I suffer from a bit of the imposter syndrome, because sixteen years on I still sometimes can't believe that I'm considered some sort of "expert" in breast cancer, much less anything else. It's not that different than when, as a freshly minted faculty member, I was sent out to our cancer center's affiliates to attend their tumor boards as the "expert" from the mother ship.

In any case, in my blogging world, Breast Cancer Awareness month not infrequently provokes a sense of trepidation. This is not because I have any objection to the event; I actually quite appreciate the attention on the disease to whose eradication I've devoted my professional career. Rather, it's because every year as October rolls around I can count on an unrelenting rush of stories about breast cancer that are either full of misinformation or promote downright quackery. Particularly irritating to me are what I like to call alternative breast cancer cure testimonials. Indeed, one of the very earliest posts I ever wrote for this blog was about just that, understanding the nature of cancer cure testimonials, using—of course—breast cancer cure testimonials as examples. Over the last decade I've written more variations on these discussions than I care to remember, and unfortunately, even after all that time, they just keep coming and coming. As repetitive as these stories can sometimes become, I feel obligated to take them on from time to time because to me it's important to explain and illustrate why they do not demonstrate that whatever quackery the patient chose instead of effective chemotherapy is not responsible for the patient's good fortune of still being alive. Also, when such women die, as many of them ultimately do, I point it out when I learn of it not out of a desire to gloat, but rather out of profound sadness and a desire to warn others. Kim Tinkham is perhaps the best example of this, a sad tale of a woman who chose Robert O. Young's quackery over effective medicine and ultimately died of her breast cancer.

So here comes another one:

A SUNSHINE Coast mum who decided to fight breast cancer without drugs is clear of the disease and about to go undergo reconstructive surgery.

Corissa Macklin-Rice underwent a double mastectomy in March last year after being diagnosed with stage three ductal carcinoma which had spread into her lymph nodes.

She chose not to have chemotherapy, radiation or the oestrogen blocker Tamoxifen after watching her mother's battle with breast cancer which ended with her death in 2011

Ms Macklin-Rice regards the conventional drugs as "poison" and chose to fight cancer by adopting an organic vegan diet and making lifestyle changes.

The Bli Bli 43-year-old said she was now clear of cancer.

I vaguely remember hearing about this case last year but for whatever reason didn't blog about it at the time. Like Jessica Ainscough, she appears to have chosen a variant of the quackery known as the Gerson protocol:

"I have anywhere up to 13 juices and five coffee enemas per day. I only eat organic food, use no chemicals and gave up my hairdressing job due to the chemical exposure."

While her decision has received strong criticism from loved ones and friends, Ms Macklin-Rice said she stood by it, feeling happier and healthier than she had in years.

"My friend told me one night that she hated me for wanting to die," she said.

"I said to her we all choose which way we will go. I believe I am choosing life."

Ms Macklin-Rice said she had heavily researched all options before making her decision.

"I personally believe that the body has the capability to heal from anything and everything naturally. It does frighten people not to have a quick cure," she said.

Thirteen juices and five coffee enemas per day? Yes, that's pretty much exactly what the Gerson protocol requires. Also, the Gerson protocol requires supplements. It's also hard here not to point out that it's impossible to "use no chemicals." If you eat and drink, you are eating and drinking chemicals. If you bathe, you are bathing in a chemical (water, or, as snarky skeptics like to call it, dihydrogen monoxide), if you breathe, you are breathing chemicals. Air is, after all, a mixture of primarily nitrogen and oxygen, with much lower amounts of carbon dioxide and other chemicals. Yes, it's a pet peeve of mine.

We also seem ideas that come to the fore time and time again in these stories and explain the human reaction to embrace woo rather than science-based medicine. Macklin-Rice saw her mother die of breast cancer four years ago. I get it. I watched my mother-in-law slowly die of breast cancer six years ago, although she never received chemotherapy after her metastatic disease was diagnosed because it was so advanced that even the most aggressive oncologist was not enthusiastic about more chemotherapy. It's easy to see how Macklin-Rice might not be able to separate the effects of her mother's growing tumor from effects of chemotherapy and therefore blame chemotherapy for her mother's death. It's a very human reaction, but it's one that drives people from indicated chemotherapy time and time again.

I realize that newspapers see women like Macklin-Rice and instead of seeing a woman being misled by quackery see a brave woman forging her own way, a human interest story, with a dash of controversy thrown in, but I detest how reporters tend to glorify such stories. I also detest how they misunderstand the nature of breast cancer treatment. Why? Well, contrary to what Macklin-Rice seems to think, it's not the alternative medicine quackery (but I repeat myself) that has kept her alive. It was the surgery. She had maximal surgery, a double mastectomy, plus removal of her lymph nodes. What does that mean?

As is usually the case with testimonials, I tried to find out as much as I could about Macklin-Rice's cancer. Reports are rather vague. We know she had involvement of her lymph nodes, but we do not know how many. We know that she had a palpable lump large enough that a mastectomy appeared to be the best treatment. That means she had at least a stage II, probably stage IIB cancer, although she might have had a stage III cancer. We do know that it's grade 3. We do not know if her tumor is estrogen receptor positive, which makes a difference. If we go to Adjuvant! Online, we can nonetheless determine what the actual effect of Macklin-Rice's choice will be if we make some reasonable assumptions. For instance, for purposes of this exercise I will assume her tumor is 3-5 cm in size and that she has 1-3 positive lymph nodes. For purposes of this exercise, I assume that Macklin-Rice is in perfect health, which seems reasonable. There is, of course, a lot of wiggle room and uncertainty give the vagueness of the information we have (for instance, if her tumor was negative for estrogen receptor, Macklin-Rice would not receive Tamoxifen), but this gives a ballpark figure:

Adjuvant! Online estimate of Ms. Macklin-Rice's chances

So there you see it. Making these assumptions, with just surgery alone, Macklin-Rice could have expected a 51% chance of being alive in ten years. Not great odds. Adding chemotherapy alone would increase her odds by around 22%. So basically, by forgoing chemotherapy, she decreased her odds of being alive in ten years by around 30%. That is typical. Chemotherapy in general increases the odds of long term survival by around 30% in breast cancer. Of course, her odds of being alive in ten years remain better than 50-50 even with just surgery. Of course, if her cancer was worse than my assumptions, the numbers get worse, but the potential benefit of chemotherapy becomes greater on an absolute basis.

Yet her story is basically an "I'm still standing" story, a triumph that she is still alive more than a year later. It's not surprising that Macklin-Rice is alive a year later; it would be, while not surprising, unusual if she were not alive a year after her surgery. This gives exactly the wrong message, namely that her choice of quackery was the right one and that she is doing well.

Sort of:

She treated a recurrence of the disease - some lumps in scar tissue - in May this year using a home-made black salve.

This is a dire sign. Local recurrences in the skin of the mastectomy flap is a poor prognostic sign; where there is one recurrence, there will usually be more. The end result can be horrific, en cuirasse disease, which can result in great pain due to huge foul, fungating, ulcerating swaths of chest wall. It's also why radiation is often recommended after mastectomy for a more locally advanced breast cancer—to prevent this very occurence. But what about getting rid of the local recurrence with black salve? I've written about black salve many times before; it's basically caustic fluid. It burns. So, instead of a clean excision of a chest wall recurrence, Macklin-Rice chose a much messier, nastier path, burning the lumps out and leaving ugly eschars. As I've put it before, black salve is cutting and burning naturally and without fine control. Sure, it can work for small skin lesions, but at what cost? I also have to wonder about the plastic surgeon willing to do Macklin-Rice's reconstruction under these conditions. Yes, plastic surgeons hate chest-wall radiation because it makes reconstruction harder and the cosmetic results less satisfying, but local recurrences in their reconstruction are an even worse outcome.

Here's what truly infuriates me about alternative medicine approaches:

Ms Macklin-Rice put the recurrence down to becoming slack with her diet, sneaking "party foods" and alcohol.

"I had got a little complacent with food so I had to get strict again," she said.

On the one hand, there is the idea of "empowerment," where the patient takes charge of her disease and is responsible for its outcome through radical diets, coffee enemas, or whatever. There is a dark side to "empowerment," however. It's a dark side discussed many times here. That's the idea that, if a cancer patient isn't doing well, if her disease recurs, it's her fault for not having adhered to the regimen of woo tightly enough, for having failed it somehow. In other words, the methods never fail; the patient does. If the cancer recurs, it's the patient's fault. So Macklin-Rice believes (apparently) that she must always adhere to a rigid vegan diet and do her Gerson therapy religiously (word choice intentional) for the rest of her life; or her cancer will return and it will have been her fault.

I don't call that "empowerment." I call that blaming the patient.

Knowing what I know about Macklin-Rice, I am not optimistic about her chances of long-term survival. I cited a roughly 50-50 chance of her living ten years based on Adjuvant! Online and optimistic assumptions, but if she has had chest wall recurrences those assumptions are far too optimistic. Macklin-Rice could conceivably beat the odds and do well indefinitely, and I hope that she does. I wouldn't bet money on it, though.

oracknows Thu, 09/17/2015 - 02:30

Didn't the article say that she had Stage III disease? I also didn't see where you got that it was grade 3?

This doesn't change the overall message of the article, just trying to clarify some possible typos/oversights.

This story clearly states that she had grade 3 ductal carcinoma with lymph node involvement. That's at least stage 2.

http://www.sunshinecoastdaily.com.au/news/the-toughest-choice/2277834/

In retrospect, I see that the second story mentions that she was stage III. This actually makes the numbers worse.

The example I used in Adjuvant! Online is stage IIB (T2N1M0). I reran the numbers bumping her up to stage IIIA, and her chances don't change much. With surgery alone, her ten year survival becomes 48.9% and the benefit of chemotherapy is an increase in survival of 21.6%. If I bump her up to stage IIIB, then her ten year survival falls to 31% with surgery alone, with a chemotherapy benefit of 26.8%—an even greater benefit.

This article (that you linked to) clearly says Stage III

"Corissa Macklin-Rice underwent a double mastectomy in March last year after being diagnosed with stage three ductal carcinoma which had spread into her lymph nodes."

http://www.sunshinecoastdaily.com.au/news/a-sunshine-coast-mum-who-figh…

See above comment. If I have time later, I might go and do a new graph to insert, but I don't have time right now.

I think the patient-blaming is one of the ugliest things about CAM. In real medicine, yes, sometimes noncompliance is a problem. But it's not the default assumption, that is, if I complain to my doctor that a medicine didn't work, he doesn't automatically turn around and say, "Well, you must not have been taking it right."

" home-made black salve"?

Did she get the recipe from Modern Alternative Mom?

Were "some lumps in scar tissue" ever confirmed by biopsy to be tumor recurrence? It's not uncommon for fat necrosis at or near a surgical site to simulate tumor. If the "lumps" were benign, then maybe black salve "cured" them (at the expense of further pain and scarring).

There is no reasoning with a person that chooses this route. I've tried. The word "natural" is very powerful to them . Furthermore, they are totally convinced that "the cancer industry" exists only to line the pockets of Big Pharma. The charlatans out there use these arguments to great effect, lining -their- pockets.

Ultimately, they become victims that fade into the night. We rarely hear about that outcome.

black salve. ...in other words a do-it-yourself surgery . What a rugged individual! Does she make her own micro-chips too?

Black Salve reminds me of the scene in the movie MASH where the docs make a black capsule for a depressed (suicidal) dentist.

Macklin-Rice has sold herself a bill of goods. I fear the cost may be too high.

My sister-in-law had pancreatic at stage III when diagnosed. Did the Gerson. It was heartbreaking to see her sink, in pain and with full knowledge of what was happening. My brother-in-law, who still works for a Nature's Something Company finally said "Don't blame me." I've never told him this: I do.

Speaking about breast cancer, what do you guys think about breast cancer being linked to bovine leukemia virus? " When
the data were analyzed statistically, the odds of having breast cancer
if BLV were present were 3.1 times greater than if BLV was absent.

"This odds ratio is higher than any of the frequently publicized risk
factors for breast cancer, such as obesity, alcohol consumption and
use of post-menopausal hormones," said Buehring." Is it just a statistical coincidence? Source: EurekAlert! University of California, Berkeley report

Amine @12: I'd heard that before, from a professor at Berkeley in 2005, but I hadn't seen anything else about it recently.

I guess the question is: is this just a confounder where the actual mechanism of action is totally unrelated, or is there a likely mechanism of action?

(My favorite confounder: coffee is linked to cancer, because smokers drink a lot of coffee. The smoking is what's actually linked to cancer (and a number of other things) and coffee is just along for the ride.)

Sorry if this is a digression, but it appears that Trump flew the anti-vax flag at last night's Republican debate. New York Times story here:

http://www.nytimes.com/2015/09/18/health/republican-presidential-debate…

Quote: "This time, it was Donald J. Trump who vigorously asserted a connection between vaccines and autism, telling an emotional story of an employee whose “beautiful” baby fell ill with a fever after having a vaccine and, he said, became autistic. While the two candidates who are doctors — Rand Paul, an ophthalmologist, and Ben Carson, a retired neurosurgeon — said that childhood vaccines were safe and important, even they shied away from the strict schedule set out by the medical profession."

Uh-oh.

This needs to be on our radar ASAP. If Orac has a different item lined up for Friday, maybe we can pick this up downthread over the weekend. I'm interested in whatever strategy the SBM community has for dealing with it, which I'll promote in other places I hang out.

Gray Squirrel@14
It's already underway in Donald Trump thread (Ann first mentioned it in #132). Certainly a very scary situation.

CapnKrunch @ 15: thanks, I'll go there. Sorry I missed that and posted it here.

This needs to be on our radar ASAP. If Orac has a different item lined up for Friday, maybe we can pick this up downthread over the weekend. I’m interested in whatever strategy the SBM community has for dealing with it, which I’ll promote in other places I hang out.

Uh, I already wrote about Donald Trump's antivaccine proclivities a day before the debate, specifically because I suspected the issue might come up at the debate:

http://scienceblogs.com/insolence/2015/09/15/the-long-sordid-antivaccin…

Given that what he said at the debate was basically the same thing he's been saying for eight years, I don't know that it's a good use of my time to do a followup, particularly given that I'm at a meeting right now and my time is very constrained (which is why today's post might look familiar to some, but only some).

There is a good editorial about Trump & Carson at http://outbreaknewstoday.com/ concerning anti-vaccine.

If the article at comment #2 is accurate, Corissa is in the same part of the world ie same city, as the late alternative medicine and Gerson guru, the Wellness Warrior.

Very sad if she turns out to be an acolyte.

Cancer is natural. That's what drives me nuts about this kind of quackery, in addition to all the inherent patient blaming. Natural and healthy are sometimes two different things. I had pretty much the same diagnosis myself, at age 39. (Lumpectomy) surgery, chemo, radiation, and a year of Herceptin infusions are all miserable, even without serious complications or side effects. Watching women die of the same disease is much worse. The people who love her will have to watch that happen to her, knowing she refused treatment. I don't think that's something a person ever gets over.

She is getting grossly irresponsible, benign-to-positive coverage in a couple of the British tabloids right now. The overall tone is of praise for being a lone wolf and implicit encouragement for being a maverick. I don't know how these idiotic tabs get away with this blatantly destructive, sensationalist coverage of such "mavericks."

The Daily Mail has some rather gory pictures of skin lesions apparently caused by black salve through which she was able to "pull out lumps".

I was reassured to see that all the top-rated (and worst-rated) comments were rather sensible objections to the story. It's a very unusual day when I agree with a Daily Mail commentator.

Cate K@22:

It’s a very unusual day when I agree with a Daily Mail commentator.

You want to rub some Black Salve on that, ASAP.

Sara @21

Perhaps because regulation of our press in next to useless? Because even actual medical journalists in mainstream media rarely have any relevant qualifications and so get taken in by any old manure of the bovine?

Disclaimer: I have complained to our then press regulator about inaccuracies and outright untruths in stories in the Mail; complaints dismissed because the articles in question were "opinion pieces", i.e. print any old lies you like as long as it is an "opinion".

Ahhh, Orac, seems like you're willfully ignorant and turn a blind eye to personal testimony.

Dr. Yoshihiko Hoshino in Japan has used the Gerson therapy successful for well over a decade now at their hospital. Dr. Wilko van der Vegt is another man with thousands of patient files confirming Gerson's effectiveness.

Gerson also documented his own 50 cases in his cancer book with irrefutable evidence. (but of course it

Mainstream treatments have never been proven to be more effective than Gerson's, or the litany of others such as Rene Caisse (who had over 50,000 signatures testifying to her work when it was presented to the Canadian government), Dr. Rife, John R. Christopher or Richard Schulze.

My own grandfather had leukemia and underwent Gerson therapy and was cured, living another 14 years while prior was given 4 months to live.

But of course, i'm sure the never-ending level of denial will continue on. Unfortunately, people such as the ones named in this article aren't truthful, and no practitioner has ever claimed 100% success rates, even Gerson himself said his success rate would have been higher had the family and patients been more cooperative. Nevertheless, the success rates with Gerson therapy are higher than poisonous treatments, that is proven in the fact the Gerson institute in Mexico has had thousands go through, and thousands find success, as well as the hospitals in Japan that use the therapy and have had great success, as well as in Europe.

When you or someone you know gets cancer and chemo/radiation fails you, hopefully you'll turn to Gerson therapy.

Dr. Yoshihiko Hoshino in Japan has used the Gerson therapy successful for well over a decade now at their hospital.

This is lacking in useful specific details. I'm pretty sure that Japan has more than one hospital.

Gerson also documented his own 50 cases in his cancer book with irrefutable evidence

If the evidence is irrefutable, then why is it only published in his book, and not a medical journal?

even Gerson himself said his success rate would have been higher had the family and patients been more cooperative

Quack cancer rule #43:When the 'treatment' fails, blame the patients!

Gerson himself said his success rate would have been higher had the family and patients been more cooperative

"I advised my patients not to die, but they stubbornly ignored my instructions."

http://www.dailymail.co.uk/femail/article-3236311/People-need-faith-giv…

"Using a homemade recipe she found online made from different herbs and roots, Ms Macklin-Rice made the drawing ointment to bring the cancer out of her chest.
'It can't go too deep so if things are at the surface it's okay and I actually pulled out quite a lot of lumps that were recurring,' Ms Macklin-Rice said. Using a homemade recipe she found online made from different herbs and roots, Ms Macklin-Rice made the drawing ointment to bring the cancer out of her chest.
'It can't go too deep so if things are at the surface it's okay and I actually pulled out quite a lot of lumps that were recurring,' Ms Macklin-Rice said."

And the image of the scar... As sensational as it is, the Daily Fail article might actually scare some people off from trying out quackery. Or so I'd like to believe.
I hate that I know how her success story is probably going to end. Sad.

Why is tamoxifen listed as a carcinogen?
http://www.cancer.org/cancer/cancercauses/othercarcinogens/generalinfor…

ken, the page located by your URL explains why. Pro-tip: use Ctrl+F (or select Edit→Find) and type in tamoxifen. Then go read what it says at the various places it found for you.

Alternative cancer therapies: The quest for certainty

oracknows — Fri, 06 Mar 2015 08:15:18 +0000

Alternative cancer therapies: The quest for certainty

"I don't want knowledge. I want certainty!"

--David Bowie, from Law (Earthlings on Fire)

I know I've already said this once, but I have to say it again, but it's been a rather stressful week on the old blog, but I hadn't planned on writing about this particular topic again (although I will say that this will likely be the last time I do write about it for a while, perhaps forever, unless we learn something new). A little more than one week ago, a young Australian woman named Jess Ainscough, better known as "The Wellness Warrior," died a potentially preventable death due to a rare form of sarcoma because she chose the quackery that is the Gerson protocol instead of radical surgery, a sad event that I discussed in last Friday's post. Although I expected some criticism from from Ainscough's fans, I didn't expect that post to drive more traffic to this site in a three day period than any other prior three day period in the ten year history of this blog, nor did I expect the flood of comments (approaching 1,000 as I type this). In any event, in response to a post by an "alternative health" paleo nutritionist, I discussed what, if anything, the "alternative health movement" would learn from her death (nothing). Finally, in response to an excellent post by an oncologist about alternative medicine for cancer, I discussed alternative oncology versus real oncology.

The story of Jess Ainscough is a sad one. Certainly, it saddened me to see such an obviously intelligent, talented, and vibrant young woman throw away her one best shot at surviving her cancer, and when the inevitable occurred it saddened me even more, particularly realizing that the same quackery had also claimed the life of her mother Sharyn, who had relied on the Gerson protocol as well to treat her breast cancer and died last year. Indeed, that was the first time I became aware of Jess Ainscough. I could understand somewhat why she did it. After all, as I discussed in the links above, for her cancer cancer, a synovial cell sarcoma of her upper arm, the first recommendation was for what sounded like a forequarter amputation (warning: link leads to graphic surgery photos), a radical amputation that includes the shoulder, axillary contents, and the shoulder blade. I could understand why she leapt at the chance to avoid that disfiguring surgery when her surgeon offered her isolated limb perfusion, even though I know that isolated limb perfusion rarely completely eradicates limb sarcomas. Ainscough was no exception. Her tumors shrank away, as tumors often do in response to limb perfusion, and then recurred a year later. It was at that point, when amputation was then recommended again, that Ainscough chose the Gerson therapy. Over the next few years, she became famous in Australia as an advocate of "natural" diet and living, in particular raw vegan diets.

All the while her tumor, as epithelioid sarcomas tend to do, was slowly but relentlessly progressing, something she had increasing difficulty hiding during the last year of her life.

So why write about her again, given that I've already written two whole posts about her and a post that used her case as a jumping off point to discuss cancer quackery? For some reason I didn't finish a post last night, leaving me without anything this morning. Fortunately, I found something in my moderation queue, a post from someone who claims to be a friend of a close friend of the Ainscough family. Obviously, I can't verify this other than by looking at the IP address and confirming that it does indeed originate from Queensland as claimed, but the account in the comment appears to ring true to me based on what I know from other sources. Here's what "Family Friend" relates:

I've debated posting this, but I feel I have to.

I'm a family acquaintance. More a friend of a close family friend, but I do know the Ainscough family, and it's important that her followers know what the last year or more was actually like for Jess.

She was tremendously shaken up by the death of her mother. Much more than her last blog posts let on. She was not only grieving the loss of a parent, but she felt a lot of guilt and suffered a crisis of faith.

Before her mother's death, she could argue a doctor under the table with nothing but unbridled confidence. She believed so much in what she was doing, that she cannot be considered a fraud. A fraud knowingly deceives people for gain. Until the death of her mother, she believed everything she stood for, down to the letter. Until that moment, she had not seriously considered her own mortality.

After, her health deteriorated very quickly. She dealt with grief, guilt and depression on top of her worsening physical condition.

Towards the end, she was desperate and deeply regretful. It's one of the big reasons that her social media accounts, website and videos were deleted. The truth is, she died knowing that she rejected treatment that may have saved her life, or at least prolonged it. If you put yourself into the shoes of a young woman who has to face that she gambled with her life and lost, you will realise what a terrifying revelation that is.

To concede that you were wrong about something is a bitter pill to swallow, but to know that it will lead to your premature death is just unimaginable.

I've already seen commentary around that suggests that her crisis and questioning of her treatment led to negative energy that made the cancer flare up. That is simply not true. Her arm in particular degraded at an expected rate, even during the height of her positivity and commitment to her regime.

I personally did not believe in what she was doing. It was also a bone of contention and cause of frustration for some other family and friends, but rarely spoken about directly. The result is sad for all involved, but it was not unexpected to some of us. And there is no joy whatsoever to derive from being right in this situation.

I understand why her followers and associates are coming to her defense. They only ever really knew the dedicated and passionate Jess that would not hear of any other treatment for her condition. They're looking for holes and logic and conditions in which this could all still fit, though tragically, into what she believed and taught.

The tragic truth is that, in the end, she didn't believe it. She did not regret her healthy lifestyle, but she most certainly did regret rejecting conventional treatment.

First off, I thank this person for posting, whoever it is, for posting this.

One thing that stands out is the statement that there is "no joy whatsoever to derive from being right in this situation." I couldn't have said it better myself. Ainscough's fans have been dropping comment after comment about how I'm supposedly evilly cackling as I dance on Ainscough's grave (metaphorically speaking), when nothing could be further from the truth. I hate to see it when cancer quackery claims another victim, as regular readers who've seen previous posts about previous victims know. My only purpose in discussing these cases is to try to prevent others from making the same bad choices that people like Ainscough have made. The other point that stands out is how despicable some of her followers have been. I, too, have seen posts in which it was claimed that the reason Ainscough's health deteriorated was because the death of her mother spoiled all the positive energy that had been keeping her cancer at bay, sometimes coupled with an insinuation that she didn't do Gerson right. Indeed, the Gerson Institute itself Tweeted:

@trulymadlyme @rawfoodbliss We were very sad to hear of Jess's passing. She discontinued GT 3 years ago, but we were still big fans of hers.

— The Gerson Institute (@GersonInstitute) March 2, 2015

In other words, Charlotte Gerson herself is basically washing her hands of Ainscough's death by saying, "That was three years ago." The reason Ainscough "discontinued" Gerson was not because she rejected it, but because she had finished the two year course of therapy the Gerson Institute recommends.

In any case, it does seem, if you looked closely at her public postings (which are rapidly disappearing down the memory hole), that Ainscough did fall into a depression after the death of her mother. That's completely understandable, particularly given how close they were. It also makes sense that this "shook her faith." Alternative medicine in general, and alternative cancer treatments in particular, are very much like religion in the level of belief in the irrational necessary. Before the death of Sharyn Ainscough, it's not hard to imagine that to Jess could easily let herself be deluded that everything was fine, that her cancer was under control thanks to Gerson therapy and the healthy diet and lifestyle that she was promoting, and that her mother would be fine too. Then her mother's health deteriorated, and her breast cancer claimed her. It's very easy to see how this would be the sort of event that shattered her faith in what she was doing and made her start to doubt herself. No doubt it didn't help that her mother's death coincided roughly with her disease having progressed to the point where it was no longer possible to deny to herself that it was progressing. Indeed, it was becoming increasingly difficult for her to hide how bad her arm was becoming to her followers, even with the help of credulous press coverage.

I can understand, at least as well as anyone who hasn't made such a mistake himself can, what a bitter pill it was for Jess Ainscough to swallow last year as she realized that she had rejected the one best shot at survival, even if that choice was so brutal. In fact, the Ainscough family unwittingly helps explain why she might have made her choice in a press release they published in tribute to The Wellness Warrior:

Throughout almost seven years with the disease, Jess worked with some of the world's best healers and oncologists undergoing both conventional and unconventional therapies.

Conventional treatments at the beginning appeared to help temporarily.

However when the cancer returned and doctors explained there were no real guaranteed options at that stage, Jess elected to devote herself to unconventional treatments which included Gerson Therapy for two years.

Note the phrasing: "No real guaranteed options at that stage." That's rather different than the story Ainscough routinely related, namely that her doctors told her that her disease was "incurable." What they probably told her is that the only treatment with a chance of eliminating her cancer and letting her survive was the radical forequarter amputation. What they also probably told her is that there were no guarantees, that even that disfiguring of an amputation had only a 50-75% chance of letting her live ten years. (I base my estimate on a previous discussion elsewhere.) With that discussion coming in the wake of her tumor's having recurred after isolated limb perfusion, no doubt Ainscough wanted a guarantee. Unfortunately, in medicine there are no guarantees. That's a very hard thing for many people to accept, because we humans want certainty. That's why alternative medicine, especially for cancer, is so seductive. In contrast to choices like the one Ainscough faced five or six years ago after her sarcoma recurred, alternative medicine offers certainty.

oracknows Fri, 03/06/2015 - 03:15

Alternative oncology versus oncology

oracknows — Wed, 04 Mar 2015 07:30:59 +0000

Alternative oncology versus oncology

I hadn't planned on discussing the death of Jess Ainscough again, figuring two posts in a row were enough for now, barring new information. Besides, I was getting a little tired of the seemingly unending stream of her fans castigating me for being "insensitive" and saying it was "too soon" to discuss her death and wasn't sure I wanted to reawaken that discussion, which is only now finally dying down. This was a young Australian woman who was unfortunate enough to be diagnosed with a rare form of sarcoma at age 22 for which the only known treatment with a reasonable chance of providing her long term survival was a radical amputation of her right arm. Her doctors tried isolated limb perfusion with chemotherapy, which made the tumors appear to disappear, but unfortunately they recurred after a year, which led back to the recommendation for a radical amputation, probably a procedure known as a forequarter amputation. It was at this point that Ainscough rejected conventional medicine to treat her cancer, embraced the quackery known as Gerson therapy, and became the Wellness Warrior, a popular advocate for "natural" living and the Gerson protocol. All the while, her tumor kept slowly progressing, and, less than a week ago, it finally claimed her life after nearly seven years.

Then I saw a column by an oncologist named Ranjana Srivastava in The Guardian's "Comment Is Free" entitled What do doctors say to 'alternative therapists' when a patient dies? Nothing. We never talk. (OK, actually, some commenters referenced it, and a couple of my raders sent me the link.) It's an excellent discussion of a topic we don't often think about. Dr. Srivastava uses Jess Ainscough's case as a jumping-off point to discuss the very uncomfortable issues that come up whenever a science-based practitioner "shares" a patient with an alternative practitioner.

I might be a cancer surgeon, but, fortunately, I rarely have to deal with this issue because the treatment course surgeons offer tends to be a more immediate, shorter-term treatment. This is certainly true for breast surgery, which is mostly what I do, although for certain GI and other forms of surgery a patient can be seeing the surgeon for many months or even years. In any case, I usually see the patient, determine the operation she needs, do the operation, and then follow the patient until she's done with all her immediate adjuvant treatment, usually between six and twelve months. Alternatively, if in my judgment the patient needs neoadjuvant chemotherapy to shrink her tumor before surgery, I will send her to the medical oncologist and see her again near the end of her chemotherapy to schedule surgery. It tends to be the medical oncologist who follows the patient for years, and during the chemotherapy phase (if chemotherapy is needed, which is isn't always for breast cancer) might see the patient quite often over the course of the five months or so that it takes to administer standard chemotherapy for breast cancer.

They are the ones for whom Dr. Srivastava's article will hit home, because they are the ones who have to deal with such things far more often than a surgeon like myself will. After all, usually, if the patient is willing to undergo surgery, she won't be pursuing a lot of the woo described in this article. Alternatively, I tend to see the patients at the end stage of having pursued quackery instead of effective treatment, when they have huge fungating cancer lesions on their breast that I can't do anything about, which happens (fortunately) not too often, but nonetheless more often than I would like. Actually, one in a career is more often than I would like.

Dr. Srivastava begins:

The consultation is over and I stand to escort her out. Through the open door, I notice the waiting row of patients staring drearily at the television.

“But I am not done yet,” my patient says plaintively. “I still have questions.”

She’s already extended a 30-minute consult and I’m pushed for time. From her purse, she unfurls a long list. With its different colours, arrows and flags it looks like a complicated transit map.

“Should I have my intravenous vitamins on the day of chemo or after it?”

I don’t have a chance to answer before she continues: “Can you move my chemo appointment to fit in a colon cleanse? They are really busy, you know. Booked out weeks in advance.”

Reading this intro, I thought: Dr. Srivastava has the patient of a saint. On the other hand, as I point out time and time again to tone trolls who object to the sometimes—OK, often—snarky nature of my online brain droppings as being so very, very mean, it is possible to act in different ways depending upon the situation. In other words, I never go full Orac on a patient, and, believe it or not, can exhibit quite a bit of patience with patients like this, for the simple reason that I don't want them to die of their disease. (Yes, contrary to the seeming belief of some concern trolls, Orac is quite capable of adjusting his behavior and rhetoric to be appropriate to the situation.) That is not to say that I won't be blunt sometimes. If a patient asks me what I think of Gerson therapy (and that has happened) I will politely tell her that in my medical opinion it's pseudoscientific twaddle based on ideas about cancer that were fast on the wya to becoming outdated over 100 years ago. Most patients appreciate that. The closest I've ever come to going "full Orac" was when a patient asked me about Leonard Coldwell, because I view him to be as much a charlatan and con man as Brian Clement. I quickly restrained myself, but could not hide my alarm that my patient was thinking of going to Coldwell.

Irritation aside, it's important to remember that patients like this really do believe that the quackery they are pursuing is every bit as important to their recovery as the chemotherapy, and no amount of evidence will convince them otherwise. If you understand that patients like the one Dr. Srivastava discussed really do think this way, then her wanting to delay chemotherapy for a colon cleanse because the colon cleanses are harder to schedule then chemotherapy or try to juggle her high dose vitamin infusions with the chemotherapy, when neither the colon cleanse nor high dose vitamin infusions add anything to her treatment other than a lot of expense and the potential complications and interference with her conventional therapy. From this, ethical conflicts arise. If we're too blunt about what we think about the quackery, we risk driving the patient away, completely into the hands of the quacks, but if the patient wants us to cooperate with the quack, that's an ethical problem too, because we as physicians shouldn't be facilitating unscientific and ineffective treatment of our patients.

Most frequently, this issue comes to a head when the alternative medicine practitioner wants the physician to order tests that he can't order, like CT scans, blood work, or other tests, to monitor the "progress" of the quack therapies he's using. Dr. Srivastava describes exactly that, when a patient asks her for a "scan to show which natural therapy will best penetrate the tumour.” This is the sort of thing that drives primary care doctors to pull their hair out even more than oncologists, because the oncologists will inevitably decline, and that will drive the patient to go to their primary care doc. In any case, we've discussed this issue before with respect to Stanislaw Burzynski patients, as Burzynski requires them to have a local physician who will monitor them as they take antineoplastons. For example, in Eric Merola's second paean to Burzynski, Laura Hymas taped a conversation in which she asked her oncologist to sign on to be the local doctor monitoring her during treatment with antineoplastons and ordering lab work, and he refused.

The key points Dr. Srivastava makes are two-fold. First, she notes that alternative medicine practitioners can be very callous about abandoning their patients at the end of life:

The emaciated breast cancer patient who was told to present to emergency because there was nothing else her alternative provider could do to help her walk. Neither could we. She died of spinal cord compression after vigorous manipulation of her back.

The man whose finances and prostate cancer had both spiralled out of control by the time he forked out $50,000 dollars on vitamin infusions. He regretted forgoing the proven benefit of chemotherapy.

There was the man whose wife discovered the extent of his natural therapy debt only after he died and was forced to sell the house.

Leading Dr. Srivastava to observe:

Abandonment by the oncologist at the end of life seems a common regret – but I dare say it pales in comparison to the blatant dereliction of duty by alternative practitioners when cancer patients fall really ill. If you don’t believe me, ask a GP or an emergency physician, the other professionals asked to salvage these patients.

There's one difference between alternative medicine practitioners and real doctors. Ethically, we can never abandon our patients. When the patient gets too sick, the alternative medicine practitioner can just wipe his hands of her. Physicians have to try to do something regardless of how sick the patient is, even if that "something" is nothing more than palliation, a critical part of end-of-life care that alternative practitioners seem to have no concept of.

This leads Dr. Srivastava into her second point, which is that alternative medical practitioners almost never talk to oncologists sharing the patient, and in particular they never talk after a patient dies:

I asked this question of several doctors and the answer was unequivocal. “We don’t talk.” As in, we never talk.

Oncologists and alternative health practitioners move in different spheres though plenty of evidence suggests we end up looking after the same patients. When I discover (usually belatedly) that my patient endured the broken promise of an unproven cure, I feel dejected. The more expensive, extreme or exotic the treatment the messier seems the ending.

I have little expectation that someone who would sell false hope to a vulnerable patient would talk me through their reasons why. I once ran into a licensed doctor who oversaw $500 vitamin infusions for cancer patients. The moment when we discovered what the other did was awkward to say the least. My expression asked, “Why?” I saw him struggle with the answer before he said, “Because patients want it.” There was no common ground for a conversation and we slid away into the crowd.

Yes, to me it's even worse when an actual physician administers quackery like this. The physician, I like to think, should know better. That doctor was right to be ashamed—and should be shamed. Unfortunately, with the rise of "integrative medicine," what once was shameful is no longer so, at least not nearly as much as it was before. In any case Dr. Srivastava contrasts these practitioners with legitimate practitioners such as physiotherapists, palliative care nurses and general practitioners, who "seem to have no qualms about sharing doubt, seeking advice and negotiating compromise." That, of course, is one of the differences between a legitimate practitioner and a quack.

It's at this point that Dr. Srivastava nails the reason why there is no communication:

But the point of many alternative therapies seems to be in their secret powers of healing. I know it’s often said but I honestly don’t consider arrogance a good explanation for why oncologists and alternative practitioners don’t talk. I would, however, say that dismay and distrust feature heavily. As does the troubling realisation that a doctor can face reprimand for inadvertent error but an alternative practitioner can get away with intentional harm.

Exactly. Well, almost exactly. I do have to quibble with Dr. Srivastava on one point. Although it is true that there are a lot of con men out there who bilk the desperate, most alternative medicine practitioners sincerely believe in their quackery and think that they are actually helping the patient. They are not "intentionally" doing harm, but harm they are doing nonetheless. And it is perilous for a physician to be seen as cooperating with such a practitioner, because to the family it can give the impression of approval. If bad things happen, it's not likely to be the alternative medicine practitioner who ends up getting sued, but rather the physician with the perceived "deep pockets." Simple self-preservation is a powerful motivator for physicians not to do anything that could be perceived as assisting or helping the alternative medicine practitioner, as doing so risks being perceived (or just being) complicit in the quackery.

That's part of why, in the end, as Dr. Srivastava mentions, the best most docs can do is to familiarize themselves with the various forms of unscientific medicine, although she doesn't quite put it that way. A lot of doctors really don't know what Gerson therapy is. They might have heard of the coffee enema part of it and laughed it off as "probably harmless," viewing it as just another herbal treatment. When you tell these doctors that it involves five coffee enemas a day, thirteen freshly made glasses of vegetable juice requiring over 20 lbs of vegetables in fruit a day, as well as a boatload of supplements, all administered for two years, they recoil. As well they should.

One of my favorite teaching exercises with respect to "complementary and alternative medicine" for medical students and residents is to ask them what homeopathy is. Inevitably the answer is that it's just some herbal medicine or other. I then lead them through the precepts of homeopathy, the law of similars and the law of infinitesimals, and how homeopaths dilute substances to the point where it is highly unlikely that a single molecule is left. Their reactions are inevitably of the order of, "You're kidding, right?" I tell them that, no, I'm not kidding and challenge them to look it up for themselves if they don't believe me.

One wonders if Jess Ainscough might have been persuaded not to do Gerson therapy if there had been a doctor caring for her who truly knew what the treatment involved, how it is based on an oversimplified understanding of cancer and the Warburg effect, and an understanding of human physiology that was becoming outdated a century ago. Probably not, but there are patients out there who might be so persuaded. However, we as physicians have no chance of doing that if we don't understand what we're up against.

oracknows Wed, 03/04/2015 - 02:30

Categories

Brain and Behavior

I do have to quibble with Dr. Srivastava on one point. Although it is true that there are a lot of con men out there who bilk the desperate, most alternative medicine practitioners sincerely believe in their quackery and think that they are actually helping the patient. They are not “intentionally” doing harm, but harm they are doing nonetheless.

I dare say this passage shows that, for all the Insolence, Orac possess far greater reserves of integrity and intellectual honesty than almost all the quacks out there.

How often does one see boosters of or apologists for quackery, fans of Adams, Ainscough, etc., give advocates of science-based medicine even this much credit?

Sincere or not, when I was the patient of quacks, any contradictory information I would provide about my not getting better was met with disbelief or hostility. My orthomolecular MD (trained in psychiatry!) missed a diagnosis of anorexia, how is that even possible? That he sincerely believed in candida overgrowth, adrenal fatigue, or whatever is immaterial. He was a profoundly dishonest man, not to me, but to himself. But I paid the price, he may as well have intended harm.

One of the better things to come from all of the alt med traffic on the Internet is that we get to see more and more prospective cases of what happens to patients that go the alt med route. Almost invariably their outcome is entirely in line with expectations of science based medicine. (I can't think of a prospective case where a patient eschews scientific care and has a good outcome)

It used to be that it was only the few survivors that told their stories retrospectively and could adjust their narratives as desired (it was tha magic juice not surgery that cured me). Cases like Ainscough's on the other hand, provide teachable moments of the reality of alt med treatments that doctors can share with patients. I've wondered if a study of sorts could be done by aggregating outcomes of people who go the alt med route and track their disease in the Internet - would be interesting.

That's funny, the never washing hands bit... My Doctor did exactly that with me, this was shortly after my second stroke... I. fortunately, got a different and I'd say better Doctor... But, still...

Pretty spot on. There are a few alt-medics in my circle of acquaintance and each one believes they are doing great good in the world. One commented today how he regularly invited doctors to communicate with him but that they failed to respond. Can't imagine why they wouldn't spend precious spare minutes 'collaborating' with him. I offered that he could always just provide a letter for his patients/write to their doctor describing his treatment regime so they would know what was going on. Funnily enough, he's wants it both ways - the respect of a doctor but not the responsibilities.

He's of course very fond of going off on all the vested/conflicting interests doctors have but hasn't quite grasped the contradiction inherent in his trade, i.e: he makes the diagnosis, writes the prescription and sells the 'medicine'. And is answerable to basically no one, unless a coroner somehow gets involved.

I can see that there are huge issues in the way medicine, the pharmaceutical industry and academia work but find it utterly perplexing that for so many people the answer isn't 'let's fix what's not working' with 'let's opt out of reason altogether'. So often I see the alt-med route described as 'taking your power back' though I struggle to see how handing over your hard-earned to a different set of 'experts' is a reclamation of control.

As my other half says, if this was any other industry, they'd have the ACCC and Consumer Affairs constantly on their backs and perhaps that is the way forward given that the TGA and other regulatory bodies aren't exactly onto it.

I'd never considered the abandonment of patients by alternative medicine practitioners when things go wrong but in retrospect I should have. I was once walking my S.O. home from the hospital one evening when we met one of her colleagues, a pediatric oncologist, coming in. She commented that she didn't think he was working at the time. He wasn't. But one of his patients was doing very badly and wasn't expected to make it through the night; he came in to spend the night there to be with them when the time came. How many "alternative" practitioners would have done the same?

She’s already extended a 30-minute consult and I’m pushed for time. From her purse, she unfurls a long list.

I identify with her frustration. Developing patient-physician trust takes time, and conventional practitioners are at a terrible disadvantage. Even if the homeopath/naturopath/whatever spends an entire appointment vomiting nonsense, face time is face time. The patient sees them as involved and caring; the eight minutes of face time in a med onc follow up appointment feels like a factory by comparison.

During a recent follow up appointment in my cardiology clinic, an elderly patient brought in a tape recorder and fervently insisted on playing a home-made audio recording of a cardiologist from TV speak on the evils of beta blockers, ACE inhibitors, and statins. I had to stop it because it was going to take up the entire appointment. The patient openly expressed frustration about being rushed, and about my unwillingness to listen to more than a few minutes of the tape and to consider looking into the book that was being pitched. It’s tough. It plays into the pharma shill narrative – I “rush him out on meds” and am “unwilling” to hear the “other side.”

Excellent analysis- It took me a long time to get through my head that most alt med practitioners are True Believers, essentially in a conspiracy-minded cult.

Another doctor wrote about the lure of “integrative medicine”

I got Srivastava's piece in my Guardian feed, so I read it before seeing Orac's review. What made it powerful for me was the contrast between the her polite exasperation with the patients, and the way she expressed the 'costs' to the patients, both medical and financial.

I remain convinced that an inverted assessment of political economy is a keystone of Alt-Med belief, and that is more easily disruptable than dubious claims of science. The Alties project conventional medicine as the uncaring profiteers, and their quacks as saints/heroes/saviors. But the Alt-consumer gets taken for a ride. Intent is over-rated, and difficult to parse. Who cares if the "natural cure" salesman believes his own BS, or just has a very convincing act? At the end of the day, when a patient's natural therapy debt is is so high at his premature death that his family has to sell their home, "the quack meant well" isn't much consolation.

Research shows that nearly 70% of cancer patients and a staggering 90% of patients enrolled in an early phase clinical trial use alternative therapies.

Yikes! Besides seeming to be an argument FOR some kind of 'Integrative' approach that could get this stuff under the superivison of a proper doctor (sorry, O.), we have to ask why this is so common. Anecdotally, it seems 'there are no atheists in cancer wards.' That is, most of us were brought up with beliefs in some sort of magic and miracles, even if just stuff like Santa, the tooth fairy and the Easter Bunny. Rationalism is acquired, and it's out in the cerebral cortex somewhere. Anecdotally, the receipt of a cancer diagnosis with it's very dark prognoses of one sort or another is going to put pretty much anybody's magical beliefs at maximum.

It's hard to challenge people's religion. Their hope, their faith in some force of good. They feel dehumanized when these things are attacked. But NOBODY likes to be scammed, tricked, given the short end of the stick, sold a bill of goods. This is built into Christianity of course, the Devil will appear as a trickster a false messiah.

In short, I' suggesting the most effective means of getting patients to be wary about Alt-Med is looking at, well cost-benefit rather than science. The quacks are making big bank and abandoning patients when they get sick. We ought to document both of those things with as much hard evidence as possible. Show that to patients. Don't try to tell them there is no God, only science. Tell them God hasn't shown up yet, and the quacks are devils, false messiahs. They take your money and then toss you to the side of road. They exploit and abuse your faith. You trust them, they betray you.

People understand betrayal, a lot better than they understand science.

CT Gene Guy --- This "cardiologist from TV" wouldn't happen to be a fellow who coincidentally has a last name identical to a land in a famous series of fantasy novels by L. Frank Baum, which later became a major motion picture?

I suppose there are others.

palindrom - I didn't recognize the voice, but it wasn't the man behind the curtain. Nor did it sound like an Arizona-based cardiologist with "pure" toxin-free children.

re: Sadmar's point (#9):
"Research shows that nearly 70% of cancer patients and a staggering 90% of patients enrolled in an early phase clinical trial use alternative therapies."

The definition of "alternative therapies" is missing. Back in 2009 I wrote in my U.S. News blog that NCCAM's definition is so broad as to be meaningless, encompassing one event in the previous year of yoga or prayer for better health or meditation session. Filter out this silly low-hanging fruit and I'd bet you'd see those percentages drop through the floor.

@ Sadmar

Research shows that nearly 70% of cancer patients and a staggering 90% of patients enrolled in an early phase clinical trial use alternative therapies.

The numbers may be a bit inflated, if the polls/studies considered meditation/yoga, going for a massage, consulting a dietician or spending a week at a spa as alternative therapies.

But I have to admit that 90% of people enrolled in clinical trial doing something else on the side is concerning me. That may bias results one way or another.
I do hope that the oncologists watching over these trials track how much coffee the patients are consuming...

Although, incidentally, if there is little difference in which alt-meds are used between all arms of the trial (new drug vs placebo and/or standard drug), and the new drug proves efficient, that's a nice demonstration that chemo is also more efficient than alt-med...

Sadmar, you may very well have a point. People often ignore emotional appeals but sit up when you start talking dollars and cents. If nothing else, a spouse who is thinking more clearly when they realize what it's going to do to the family finances may put their foot down and say NO!

Research shows that nearly 70% of cancer patients and a staggering 90% of patients enrolled in an early phase clinical trial use alternative therapies.

Yikes! Besides seeming to be an argument FOR some kind of ‘Integrative’ approach that could get this stuff under the superivison of a proper doctor (sorry, O.), we have to ask why this is so common.

Actually, that was one other nit I wanted to pick with Dr. Srivastava but didn't get around to because I was running out of time as I wrote this. That number is way high compared to what I've seen elsewhere; so I'd like to know what research she is referencing. My guess is that the number is inflated by including prayer, exercise, and the like and that the number using "hard core" alternative medicine, such as Gerson protocol is way, way lower.

@#7 CTGeneGuy: Having real knowledge does help develop a collaborative relationship between you and your physician. When I was diagnosed with hypertension, I refused meds at first. I wanted to try diet and exercise. My physician agreed, and asked me to come back in 3 months. I kept track of my blood pressures, but despite my best efforts (and losing about 10 pounds) it still wasn't enough.

So I agreed to meds. He wanted an ARB and a statin. I refused. I thought that was overkill for my mild hypertension, and my cholesterol/triglycerides were normal, and I've never had a heart attack. He agreed to start me on HCTZ, which did very well for about a year. Then he added atenolol, which did very well for a year after that and later changed the dieuretic from HTCZ to Lasix (I was retaining a lot of fluid, even though my GFR was >90). Meanwhile I lost 30 lbs and started eating healthier. But my blood pressure still was climbing even with meds so he added lisinopril and changed Lasix to chlorthaladone to give my kidneys a break. For awhile, that worked fine.

Six months ago I started having dizziness and feeling tired all the time. I passed out during a blood donation. My blood pressure was 98/58 (normal for me before I got HTN was 1110/70 to 100/60 so I didn't think much of it before I tried donating). I saw my doctor and he took me off lisinopril and cut my atenolol/chlorthaladone in half. Since then, my blood pressure has been steady at 110/70 or therabouts and I feel fine.

That's what a true collaboration with a physician gets you; a willingness of the physician to listen to the patient who wants to start conservatively and not jump to the expensive patent meds with limited long term safety data. It's easier for the physician to accept what the patient says if they at least point to the current literature or have valid reasons not to want to try one medication over another, and frequently follow up to see how the therapy is going.

Quacks really don't want that kind of relationship with their patients. They want to give the orders, and if they talk to a doctor it's because they want something they're not allowed by law to order; that's pure profit for the quack since the results are meaningless to them.

The patient using quack therapies like the elderly lady you mentioned don't want a real collaboration, either. They want VALIDATION that they are doing the right thing: and you refused to give it. But since she couldn't bear to change her mind, she blamed you instead of really listening.

@mna#5: after reading the comments here today, I suspect alt med quacks who really think they're doing good, like your friend, became alt med quacks because they couldn't get into medical school. As you say: all the power/ego trip, none of that hard "book larnin'", and no real responsibility to the patient . . . and thanks to our warped laws, no legal liability.

You can't even sue a quack for malpractice.

The man whose finances and prostate cancer had both spiralled out of control by the time he forked out $50,000 dollars on vitamin infusions. He regretted forgoing the proven benefit of chemotherapy.

I'll stipulate that some alt-med practitioners are true believers, but Dr. Srivastava is correct to call incidents like this one intentional infliction of harm. The walletectomy was absolutely a success; the rest of the treatment protocol failed. Maybe that practitioner was willfully blind to the harm he was doing, but that's the least unfavorable interpretation I can put on his actions.

I then lead them through the precepts of homeopathy, the law of similars and the law of infinitesimals, and how homeopaths dilute substances to the point where it is highly unlikely that a single molecule is left. Their reactions are inevitably of the order of, “You’re kidding, right?”

That's a perfectly rational reaction to the idea of homeopathy. There are some kinds of woo for which you need to have some medical training to understand why it's bunk. Anybody who has taken high school chemistry should know enough to see homeopathy for what it is. I'd venture that most of your trainees are accustomed to living in a rational world, where homeopathy would be viewed with derisive laughter. It can be a shock to realize that no, we don't live in a rational world.

There's a fundamental resource difference here, one that also shows up in politics.

To wit: the politician that does nothing but campaign and spends all his time campaigning will be more successful in the election than the politician that spends half his time doing his job and half his time campaigning. Why? The first guy has twice as much marketing power, even though he has less substance to market.

Doctors don't have advertising dollars (unless their name is Dr. Oz, but we won't count that somewhat disgraceful outlier). They spend their resources (read: time, more so than money) actually treating patients, conducting research, etc.--in short, doing medicine (their job). Alt-med practitioners tend to have *very* generous marketing budgets, and they can afford to spend their time trolling for new patients, because they aren't really obligated to do anything for the ones they already have. So what if a few patients become disillusioned and leave--like the politician above, you enthrall more people with your polished image than you drive away with your lack of substance.

In other words, alt-med practitioners can afford to whine about doctors not taking time to play ball with them, when the doctors are saying "I'd rather spend those minutes seeing patients than trading BS with you."

Re: "It's too soon". It isn't about "respecting" the person (or people) who died as if often claimed--it is about stopping the discussion. It is a ploy to keep people from challenging someone's established beliefs.

Of course, if you wait then you'll hear "It's old news so no point discussing it now".

For example, you see this play out over and over again every time there's a mass shooting in the states, and that ploy is used almost exclusively by those who don't want gun control laws.

Speaking of Brian Clement.I don't believe this followup story was posted here.
http://www.wptv.com/news/local-news/investigations/woman-speaks-out-abo…

I read the article linked from the previous comment thread. I found it pretty powerful stuff. I don't think a lot of people really think through the ramifications of the alt-med choice. Particularly in cold hard dollars and cents. I mean a lot of the time (if you have insurance) you don't really know what your care costs. You know what you pay, which is usually a co-pay or a co-pay plus a percentage of a rate negotiated by the insurance company. So you know for those three days in the hospital you got a bill for say $3,000. But alt-med is almost always all out of pocket. And it racks up fast. You pay for the consultation. Then you pay for the 'tests' the provider wants to run. Then of course they tell you that you need some supplements. Conveniently I have what you need right here! And you pay for those. A lot of these guys are even establishing lines of credit, mini-loans, so these people can pay for all of this stuff! I don't think it ever occurs to them that the 10's of thousands of dollars they are incurring in debt is going to be paid by their families after they die. They are promised the miracle and they fall for it hook line and sinker. Plus I don't know how many Go Fund Me and other types of donation pages I have seen for people trying to raise money for these things. It makes me sad. I think we need more articles with testimonials from these families who have been ruined by quacks to help turn the tide. Emotional outreach works better than facts, and the quacks have tons of glowing testimonials for their 'cures'. It is only right we hit back with what the outcomes really are for these people.

Speaking of Brian Clement.I don’t believe this followup story was posted here.
http://www.wptv.com/news/local-news/investigations/woman-speaks-out-abo…

I am fairly incensed by the nonsense of how lesions on the chest were diagnosed as "cancer oozing from her body" or the like.

How is that NOT malpractice? Or would he claim it can't be malpractice because he's not a doctor?

Clearly that type of diagnosis, made without any pathology test (or even a basic understanding of oncology), runs far afoul of any standard of care. Why wouldn't they sue the clinic for malpractice?

@Marry Me (22) - if you read this blog enough you will find that almost without fail signs of progression such as lesions, new lumps, fever, etc. are always praised by alternate med practitioners as either 'cancer leaving the body' or a treatment reaction that is a good thing because it shows that the quackery is working! As far as malpractice, given the fact that they aren't (usually) doctors, and most states broadly exempt them from malpractice (they aren't doctors after all) you can sue for malpractice. Sometimes some success has been found in suing for breach of contract or false promises, but these are hard to prove because nothing is in writing and it turns into he said she said. A few have been gotten by the FCC for false advertising, but those are few and far between. You are correct that if an oncologist did this he would be sued out of existence and stripped of his/her license as he should be.

This is what is so friggin frustrating about this. They are incompetent providers, but are providing healthcare services. Therefore, they are practicing without a license.

The fine for practicing medicine without a license is only $3700? Peanuts.

This is sad. Thanks for discussing your evaluation of Gerson. I am not a doctor but have encountered some of the Gerson literature through someone who somehow thought this would be beneficial for a family member. My evaluation of the literature I was sent to evaluate was that it was quackery. I tried to impress upon them that there were so many things going on with the proposed treatment options that it blew the mind to try to think of a proper experimental design to test such nonsense. Moreover, they didn't have anything that came close to a decent analysis of these therapies despite it being around for decades. And I say "these therapies" because the group I was made aware of offer a large number of treatment options from least expensive to most expensive. I'm sorry but it just sounded like a negative-pleasure resort rather than anything remotely connected to medicine. Two more things. First, the location of the facility I was made of is in Tijuana. Second, the person who was the contact for the person asking my advice is a chiropractor. Despite all this I believe the family member is undertaking this ridiculous treatment regime. My main (and final) advice was to ensure that they did not in any way intrude of whatever conventional medical treatment is being given. It is totally bizarre to me that someone would fall for such crap. However, when we're desperate perhaps any of us may grab at straws.

Re suing for malpractice - I thank goodness that in my state (NSW) and others here in Australia we can hold alternative practitioners to account as they are held to a Code of Conduct under the State Health Regulation 2012 Schedule 3 and people can pursue complaints with the Healthcare Complaints Commision or civil suits based on breaches of the CoC. Whether patients/families do or not is a decision they have to make, although it seems people are quicker suing hospitals and registered health professionals these days.
One of the things that the NSW Govt changed in the Health Care Complaints Act as a result of the Meryl Dorey/AVN shenanigans (and not an unreasonable amount of lobbying by SAVN) is that complaints in NSW no longer have to be made by a patient or their family member. Anyone reasonably concerned about the public health and safety of patients can complain nowadays.
And then there is our ASIC/consumer protection pathways. Promising and actively advertising cures, and especially cancer cures, is a no-no, and guaranteed to attract penalties. So is offering homeoprophylactic vaccination, as Homeopathy Plus has discovered.
That is why you see terminology like 'may assist with the symptoms of' in advertising, There are a few of us over here that are ever vigilant with watching out for this, but given that politics accepts the Argumentum ad Populum (as do our private health insurance Companies) it's an uphill battle.

and a couple of my raders sent me the link

Obviously meant to be "raiders". A.k.a. "Pillagers for Orac".

mna @5:

I can see that there are huge issues in the way medicine, the pharmaceutical industry and academia work but find it utterly perplexing that for so many people the answer isn’t ‘let’s fix what’s not working’ with ‘let’s opt out of reason altogether’. So often I see the alt-med route described as ‘taking your power back’ though I struggle to see how handing over your hard-earned to a different set of ‘experts’ is a reclamation of control.

That's one thing that irritated me quite consistently when I visited RI and engaged the trolls more regularly.

Yes, there are a lot of problems. The altie solution seems to be replacing regulation, peer review, and consumer protection laws with anarcho-capitalism where quacks have the unchallenged right to lie to unsuspecting consumers and make them pay for the privilege of becoming their poorly-monitored, unblinded, uncontrolled test subjects. Because Caveat Emptor, y'all.

Oliver Sacks on learning his cancer is terminal-
www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-term…

Kirii @21: One of the best pieces of medical advice that my mother has ever given me is this:

Don't see a 'doctor' who prescribes you pills that you can only buy from them. It's a sure sign of a quack.

(Actually it's good advice for buying lots of things.)

Agree that intent doesn't matter when the much when the net result is harm. But again from my albeit statistically non-robust sample, I haven't come across many that fit the con artist profile. Most are more akin to cult followers and have invested so much of their time, money and identity in being alt-medics that any seed of doubt must be crushed or swept aside.

Have to say, I don't see many of them raking in the cash either. As an industry with few barriers to entry (yes, some spend years and $$$ on courses but why when you can invent your own discipline) and no limits on the numbers of practitioners, the majority I know of seem to be scrabbling for scraps despite the billions being spent. I strongly suspect only a small minority are doing well, i.e. those who realise they are really in the entertainment/fashion/lifestyle industry. They also now have to compete with pharmacy chains and supermarkets who are increasingly encroaching on their turf (also deeply problematic but another issue).

From what I can see, the guy I mentioned in my earlier post and his cohorts spend as much time marketing their nonsense to each other as the general public. They all go off and do each other's courses then launch their own in a human caterpillar style circle of bullshit. Or intellectual pyramid scheme. Most of their businesses fail, as this guy's did, because their reality intolerance usually extends to business matters too. He now lives at his nan's house and, in addition to his various 'wellness programs' offers life coaching. I shit you not.

On a practical level, most of them are reasonably careful how they advertise their services but far less cautious, I find, on social media where they make all sorts of ridiculous claims. Far easier to catch them out there.

Orac reads Girls and Corpses magazine? Cool!!!

Speaking of "detox" enemas (if we must), here's a candidate for Mommy of the Year - Mandy, the Nutritional Therapist who thinks Gerson therapy (and Gonzales' version of it) are great treatments for pediatric cancer. And enemas are not only for cancer, they're indispensable for kids with minor complaints too. Voila, the garlic enema:

"Even though I had some Pre-Med coursework and herbal courses, I forgot everything when I had a baby! Gradually my first child’s health worsened as we added each new antibiotic and vaccine. His body was too weak to take on the medications and live strains of diseases. Then I began to remember my training! I searched for more healthful healing and found the garlic enema. It became my “reliable” fever buster. It always works for my children (and quite a few other children) especially in efforts to get rid of a fever or constipation and tummy pain...And let me tell you…making a garlic tea and putting this wonderful herb directly into the bowels has an amazing affect on your health and especially the little ones...I was overwhelmed with 3 birth children in diapers and an impossible curriculum of nebulizer treatments. This is when I was given the garlic enema and chiropractic!"

"Now we have had over 10 children, and visited many mommies in their bathrooms. We have used this enema on each of our children for 10 years; starting as babies, with tremendous success!"

http://www.fosteringnutrition.com/stop-fever-and-more-with-a-garlic-ene…

I wonder when Mandy will discover the wonders of MMS enemas - fabulous for those pesky pediatric behavioral issues.

Have to say, I don’t see many of them raking in the cash either. As an industry with few barriers to entry (yes, some spend years and $$$ on courses but why when you can invent your own discipline) and no limits on the numbers of practitioners, the majority I know of seem to be scrabbling for scraps despite the billions being spent. I strongly suspect only a small minority are doing well, i.e. those who realise they are really in the entertainment/fashion/lifestyle industry. They also now have to compete with pharmacy chains and supermarkets who are increasingly encroaching on their turf (also deeply problematic but another issue).

Unfortunately, in the part of Australia I live in, Naturopaths (especially those who push Acid Base Woo HARD) & their ilk seem to be doing very well indeed, thank you very much!

I know someone who, after having a rather extensive oncological surgery & starting the recommended chemo went to one "for dietary advice", only to end up preferring to pursue the (very expensive & unpalatable) diet and blandishments of a "cure" exclusively to the blunt yet ethical answers of an excellent medical team. They maintain that they are "cured". [Of course, the Naturopath cured them, not the Surgeon...] Obviously they would not actually know as they refuse to see an "allopathic" Doctor. This is someone with more than enough tertiary education to know better.

The problem is (as I see it) that now virtually anyone can put out a shingle as a "Healer/Dr." of some sort and be exempt from legal scrutiny. This was not the case until recently. Unfortunately, even in the case of Penelope Dingle, it took years of petitioning by her family for that state's Coroner to even agree to look at the case. I'm pretty sure that Scrayen woman (Homeopath) is still practising, and besides a few harsh words from the Coroner, suffered no legal consequences of what was clearly grotesque negligence at best.

enemas are ... indispensable for kids with minor complaints too

Yes, the kids soon learn to stop complaining.

It seems that one of the problems is always time. I'd love to see a cost benefit analysis of the amount of money that is spent rescuing people whose disease has been worsened by alt med vs the cost of longer doctor appointments. For those of us with socialised medicine it could be a substantial saving to the government to let people feel that they have been heard and cared for, rather than picking up the pieces when they require heroic measures. And what about the lost tax dollars of people dying way too young?

Perhaps there is a role for case managers, someone whose job it is to work with the patients and have the overview of all of their treatments, and the time and responsibility to research alternative treatments for them.

The picture at the top of the page made me think of a Frank Zappa song I was introduced to today, called The Illinois Enema Bandit. As it was explained to me, "it's about a guy who robs people and gives them enemas." I think I will forever think of Gerson as the Enema Bandit.

herr doctor bimler -regarding #27 surely you mean
Raiders of the Lost Orac!

I made the mistake of clicking the link to that enema site, and found this:

'When there is a fever, you will notice the “break” in fever as the sweat beads acquire on the upper lip during transit. Usually, children want to take a nap afterward as the relief removes the body stress.'

Right. Of course the poor kid starts sweating and wants to take a nap after Mum has put garlic tea up his/her arse! Wouldn't you?

This also illustrates the falsity of the Law of Similars: An enema of an enema is definitely not a friend.

See also 'Mouse Utopia,' specifically 'the Beautiful Ones.'

When Helen Garner (author of 'The Spare Room', an unflinching account of seeing a friend with advanced cancer be fooled and tortured by a quack, who turned out to be a Vet) came to London, I asked her what had happened to 'Professor Theodore', she replied 'He went out of business'. Her dying friend spent a lot of money being 'treated' by this quack and was full of delusional belief in him and his methods. The seriously ill are desperate: I can recall how I felt when my husband was first diagnosed with throat cancer. Five years, on thanks to conventional medicine, he is well. I would not have known what to do had he fallen for such fraudulent 'therapy'

@ Herr Doctor #35
You beat me to it. Follow the link and even the last comment says someone's kid won't let the do it. More sense than the parent / carer.
But seriously, that is downright wrong. Who on earth would contemplate doing this to a child (sick or healthy) let alone make a web page explaining how to administer it (with no mention of the dangers of someone with no medical training inserting something up a child's backside)?
Is it legal?

I had never even heard of enemas until recently, jeez and here I am finding out more than I ever wanted to.
Apparently some spa in Russia has a 360kg monument to an enema
http://en.m.wikipedia.org/wiki/Enema

And from this side of the Atlantic:

http://www.theguardian.com/science/blog/2015/mar/04/why-media-coverage-…

Speaking from the cancer patient perspective (I had stage 3 bowel cancer at 31 18 months ago, which metastasised to my lung last July), I absolutely get the allure of alternative medicine. I'm a rational guy. I have a science degree. I'm an atheist. I don't "believe" in things. Even I, at times, struggle a bit to not let my mind wander to other potential cures. It's hard not to, but when you are facing such a significant threat to your life doubt creeps in. It's hard not to and you can't help but wonder things like "is everything I've ever learned wrong" or "what if those nuts are actually right - am I being arrogant in ignoring it and is my arrogance going to kill me". If I struggle with this, I can absolutely see how those even slightly more prone to believing, or less scientifically aware, can fall prey to this rubbish. Cancer makes you desperate and scared, and alternative medicine feeds on this desperation and fear. If I can make any recommendations to health professionals is to constantly reassure your patients that they are doing the best thing they can to improve their chances of surviving. The worry of not putting your all into beating cancer is strong and I think this opens the door for alternative medicine, including for many that otherwise would shun that nonsense.

I read Murmur's link, and while there clicked on another link that I think is pertinent here.

A gentleman by the name of Larry Rees wrote a response to a letter in the BMJ from a Dr. Richard Smith who claimed that cancer was the "best way to die." Mr. Rees took exception to that claim as he is currently dying from pancreatic cancer (Mr. Rees wrote his response January 21 2015).

He made several excellent points but the one that sticks out for me is this:

"Yes, it is great that I’ve had time to communicate with all my family, friends, acquaintances and work colleagues.

At the same time, this process comes with a curse. It probably took me eight weeks to “be at peace” with my situation. I am now pretty calm and serene about it. I simply want to navigate through with the minimum of stress.

Yet those same groups of people put a huge strain on me daily. They don’t want to accept that I’m going to die. They want me to be the miracle that somehow gets round it. They want to use Google to find alternative treatments that will “cure” me. So I spend a HUGE amount of my limited time left dealing with THEIR baggage."

It makes me wonder how many cancer patients have been forced to endure quack treatments by desperate family and friends who couldn't get to acceptance, and couldn't deal with their own baggage.

It seems to me that a hospice consult needs to start the day the patient gets the diagnosis. Not because the patient is going to die . . . but in case the treatment is not effective and the diagnosis becomes terminal. Now as a former hospice nurse, I know we don't get involved until the six month diagnosis is made. But I also know that many hospice patients aren't admitted until the last 2-4 weeks of life, and therefore aren't able to get the best use of our services. We treat the whole family, not just the patient.

It just seems to me if we could work with patients sooner, the outcomes would be better. And if the cancer is cured, so much the better! I don't really see how someone can be harmed by learning about how to manage death even as they fight for life. Why do the two have to be mutually exclusive?

The link to the full ariticle, btw, is: http://www.theguardian.com/science/blog/2015/jan/21/cancer-research-bmj…

@Cookie #44

"... you can’t help but wonder things like “is everything I’ve ever learned wrong ..."

As a former cancer patient, this particular phrase resonated with me. A cancer diagnosis is a physical diagnosis with a strong emotional component. Once you hear that dreaded word applied to yourself, your universe tilts. Everything seems surreal; everything you've ever believed to be true seems illusory. Even with the best support system in place, you feel marginalized and alienated. And it's when this feeling is the strongest, is when you're supposed to be making informed decisions about your treatment. So much information comes at you while you are still in shock that it's hard to process anything except the over-riding fear. So, even if you are - normally - a rational person, a cancer diagnosis means that all bets are off. You doubt EVERYTHING. Your vulnerability is off-the-scale.

My cancer centre was excellent in patient education, providing classes and tons of information on your diagnosis, your proposed treatment plan, what to (physically) expect from treatment, product monographs of all the drugs you would be given, and classes in self-care (again, with a focus on the physical) during treatment.

While all of this information was very welcome and I read every piece of it, there was little information about the emotional aspects of cancer. Certainly, there was counseling available through the centre, but it was presented almost as an afterthought, when - perhaps - it should have been given equal weight to the physical aspects of cancer.

Of course, hindsight is everything, but I truly wish that my cancer centre had been more forthcoming about how emotionally vulnerable I would feel and offered much more information about this aspect of cancer: the terror, the anxiety, the sense of loss, how utterly- and completely vulnerable you are. The cancer is terrifying enough, the treatment offered more so, and it is then that many succumb to the lure of "alternative" and "integrative".

I'm not sure what the answer is to this or how cancer centres can address it, but - if the lure of "alternative" is to be nipped in the bud, it is during this window between diagnosis and treatment. Educating cancer patients on the dangers of alternative treatment may make it seem as if alternative treatments actually have equal weight to proper treatment. Insisting of more rigorous controls on alternative treatment is tough given their current popularity and widespread acceptance. Waiting for Joe Public to realize that alternative treatment will NEVER cure or, even, slow down cancer progression seems wrong. Something proactive is needed, but I haven't the foggiest idea what that should be.

The Gerson Institute has responded to Ainscough's death.

**We were very sad to hear of Jess's passing. She discontinued GT 3 years ago, but we were still big fans of hers.**

https://twitter.com/GersonInstitute/status/572474114490818560

@ Selena Wolf:

I think your description of your reaction illustrates precisely why so many people- who otherwise had been quite rational- turn to woo when given a diagnosis. Often, alt med advocates present seemingly solid, certain answers ( i.e. ad copy and prevarication) to the patient whilst SBM only speaks of likelihood and probability ( i.e. reality). This can be extremely attractive when the whole world seems turned upsidedown.

I used to counsel people who had learned that they were hiv positive, just prior to the days and then, at the beginning of the HAART era, under the auspices of an NGO, so I recall clients' difficulties.

Thus, the false promises and outright lies of woo stick especially hard in my craw.

Phlebus @41

But seriously, that is downright wrong. Who on earth would contemplate doing this to a child (sick or healthy) let alone make a web page explaining how to administer it

As a parent of a 4 yo and 6 yo, I agree. I can't fathom what a kid must feel like to have to go through this.

I feel so bad for those kids.

Ugghhh, Enema Lady (Mandy Whatserface) is a foster mom. Seriously.

From her website:

You may ask, “Why Am I a Bad Parent?” I certainly have asked this many times.

I'm surprised at your self-awareness, Mandy. Take it just a little bit further and you may find the answer you are looking for.

It occurs to me that a foster mom administering garlic enemas is something the jurisdictional foster care coordinator should know about. Where does she live?

@ Denise Walter

"... Thus, the false promises and outright lies of woo stick especially hard in my craw... "

Exactly.

Where does she live?

This information is oddly difficult to find.

Uhhhhh, so she promotes all kind of cancer quackery for pediatric cancer, and according to this article, one of her foster sons died of cancer. Wow. Uh, wow.

Roger Kulp@20:

Speaking of Brian Clement.I don’t believe this followup story was posted here.

http://www.wptv.com/news/local-news/investigations/woman-speaks-out-abo…

Sometimes I'm inclined to propose - modestly, of course - that we should stop campaigning against "Complimentary and Alternative Medicine" and start campaigning for "Complimentary and Alternative Justice" instead: wherein distraught friends and relatives of sCAM's victims can treat its perpetrators to a richly-deserved shotgun enema without fear of censure or criticism from "Big Allopathic Law".

And then there's times when I read articles like yours, and think Jon Swift was a total piker.

/scary

A half hour for a consultation in a patient newly diagnosed with cancer??? Keep in mind, the patient didn't know their appointment was for this short period of time, only the doctor and the secretary who made the appointment knew... it's as if you were in a serious car accident, and an ambulance was called, and after a half hour of them trying to extricate you from the wreck, they drove away, saying they had no more time for you... is it any wonder your patients will go elsewhere, where their concerns are at least met with some humanity? (Don't get me started on docs who have teevees on in their waiting rooms...or dated magazines of the 'Fortune' and 'Golfing' and 'Yachting' ilks; you're trying to torture us, right?) And that 'real' doc you discuss who was charging $500 for IV vitamins - since when do IVs cost that much, and how is this not robbery? You rale against alt med practitioners who cause their patients to go into bankruptcy trying to effect a cure, but seem unconcerned about your own part in incredibly expensive treatment courses, often without the desired outcome or with a dangerous side effect late in being acknowledged. How many of you have thought to ask a patient before grabbing a prescription pad 'what are your finances like' before considering your options? Because most patients are as loathe to admit to being down on their luck or recently laid off as they are to bring up their hemorrhoids... How many of you have accepted free lunches and other perks from drug reps? If you think that hasn't affected your Rx'ing decisions, why not take the high road and ban these industry whores from your offices (and save the time for some real research?) The attitude here is such that I'd be loathe to spend any time in your offices, the arrogance and hubris is stifling. You'll continue to have the same problems with the 'alt med' crowd until you get over yourselves and see yourselves the way your patients do.

I love my doctors, all of them. I also love "Big Pharma", because without them, I would be unable to live a full and productive life due to multiple health issues.

There was a time in my life, though, where I thought that maybe those alt-med people knew something (I was very young!), and I started myself on a itamin regimen that was supposed to ease my pain and fatigue. All it "eased" was my birth-contol pills - I started bleeding heavily at the "wrong" time of the month, and since I had started the BC to treat debilitating dysmennorhea (sorry, TMI, I know), this was a bit of a problem. The "therapist" never told me that more than one of the supplements I was taking actively counteract all sorts of medication, nor was I told the high-soy diet suggested (instead of red meat) would also put my BC a bit out of whack.

My doctor, along with pretty much every doctor I have seen in the past 20 years, asks that every patient bring in all the supplements and vitamins and over-the-counter stuff they take, so that the doctor and staff can check if any of them will interact with any medication they take, *and* so that they can check if the supplement is safe for the patient. Because alternative practitioners *don't* check.

Every "allopathic" doctor I have seen takes the time to ask me how I'm doing, and at the end of every doctor visit (I'm down to seeing my GP every three months instead of every month), I'm asked if I have anything else that's worrying me. I'm usually the one to rush the appointment along!

I am grateful for every doctor who has cared for me, and I'm grateful to every doctor who made sure that I've had 15+ more years to enjoy my mother that we would have had if she had gone to an alt. practitioner.

I feel about "alternative" therapy the same way that I feel about "miracle" weight-loss pills: None of them work, and some are actively dangerous for you.

@Signalfire #58
As there were already several treatments booked, the patient quite obviously wasn't newly diagnosed. And why on earth didn't she know how long the appointment was - if I'm not told, I ask when I book. That's the thing about empowerment - it requires you to use your power and not passively wait for other people to do things for you.

Time does not equal humanity - I'd rather 30 minutes of trained specialists trying to get me out of a car wreck than 3 hours of the local magician willing me out. Humanity includes tough love, to tell you that you have a chance and not spin fairy-tales.

You need to better your reading comprehension - both the original article and Orac agree that $500 vitamin infusions are quackery. It doesn't matter who is providing them, they have no place in cancer treatment.

This is not about 'us and them,' as you are simplistically making it. It is about using evidence to guide patient treatment, both in the treatments chosen and how they are presented.

And unfortunately cost and advertising are regulatory problems. We function well with socialised medicine such that patients are not bankrupted by genuine treatments. This makes it all the more shocking that they would waste a fortune on woo. And I dont know what it is like where you are, but here there are very strict regulations on pharmaceutical marketing - no junkets or even free pens. The system works well.

In fact it adds to the problem - magic treatments don't have regulation and get away with marketing that real medicine is not allowed to.

I'm sorry if you've had a bad personal experience, but even if you were in the majority, that doesn't mean we should turn to magic rather than reality. As I suggested above #36 and in Selena's suggestion of counselling there are ways to improve patient experience of real medicine, and these are things people are working on. Are SCAMmers working to become more in line with reality?

Panacea #45

Good points about the hospice etc care and when it starts: my sister is a palliative care nurse and has some very strong views on how soon they should be involved in someone's care (as an aside it was a long-standing joke between us that I, a MH nurse, talked to people for a living and she, a general nurse, did practical things...And now she works in palliative care...talking to people...).

Re. B.Erickson @ 48, quoting Gerson Institute tweet 'We were very sad to hear of Jess’s passing. She discontinued GT 3 years ago, but we were still big fans of hers.'

Do you see what they just did with that? 'She discontinued GT three years ago,' meaning, 'she died because she stopped taking our magical cure.' That is just the most self-serving rubbish, packaged with an 'oh so sad' to make it seem like something other than pure viciousness. If there's a hell...

Diets cannot fail. They can only be failed.

Re. B.Erickson @ 48, quoting Gerson Institute tweet ‘We were very sad to hear of Jess’s passing. She discontinued GT 3 years ago, but we were still big fans of hers.’

Well, we already knew that the Gerson Institute people are loathsome - but I am still appalled. Stay classy, Gerson!

"And that ‘real’ doc you discuss who was charging $500 for IV vitamins – since when do IVs cost that much, and how is this not robbery? "

I suspect that is the going rate the non-MD quacks are charging. And probably not covered by insurance. MDs can fall for being quacks for the same financial and philosophical reasons as the non-MD quacks. There are a lot of ways to increase income so you can keep the practice open as a lot of them are actually a lot more cash-strapped than most people believe.

"You rale against alt med practitioners who cause their patients to go into bankruptcy trying to effect a cure, but seem unconcerned about your own part in incredibly expensive treatment courses, often without the desired outcome or with a dangerous side effect late in being acknowledged.

I know so many docs that spend their free time working at free clinics and other low cost options (I have never seen a free alt-med clinic, but I do know some practitioners who do some pro-bono work). There is constant research into what will improve outcomes and reduce costs. Potential side effects is a very well known problem in medicine and why they have those long informed consent forms listing all the potential risks before treating people. Alt med types often tell patients that side effects are proof the treatment is working and to keep going with it. MD's will often see if there is another medication that may work better for you.

"How many of you have thought to ask a patient before grabbing a prescription pad ‘what are your finances like’ before considering your options?

Something that is increasing done in shared decision making protocols (COI notice: I am involved in a research project that is disseminating shared decision making and supporting practices in implementing it) FWIW, in surveys enough patients want shared-decision making and will change doctors to get it that I suspect it will become more prevalent because you can't keep your practice open if all the patients go elsewhere (although in many areas you don't have much choice where doctors are few and far between). (COI: I am not directly doing any health disparities work at the moment but the center I work in is heavily into this and other projects in my group have addressing rural health issues as part of their scope of work).

Because most patients are as loathe to admit to being down on their luck or recently laid off as they are to bring up their hemorrhoids… How many of you have accepted free lunches and other perks from drug reps? If you think that hasn’t affected your Rx’ing decisions, why not take the high road and ban these industry whores from your offices (and save the time for some real research?)

Oh you mean exactly like the practice the docs I work directly with have done with banning Pharma. It is also a practice that participates in what most people consider real research and training of the next generation of docs. Again these are known problems. Additionally I know practices with high populations of the poor that allow Pharma in to get the free samples which are the only way many of their patients get an medications. There are problems with costs of medications and I'm not sure the best way to address that, but some of what I've seen is more about Pharma buying politicians than doctors for things like getting patents extended and those kind of things that make a lot more money than buying lunch and handing out a few pens hoping it will convince a doc to prescribe your drug vs their drug.

The attitude here is such that I’d be loathe to spend any time in your offices, the arrogance and hubris is stifling. You’ll continue to have the same problems with the ‘alt med’ crowd until you get over yourselves and see yourselves the way your patients do.

You do know people are capable of switching gears and going from hard nosed science people to caring healthcare professionals. FWIW I like going to the hard nosed science docs as they: 1. Usually have implemented the most recent research on how to improve outcomes, reduce costs, and empower patients. 2. They can keep up when I need to talk the science.

If I may suggest looking for a patient-centered medical home for your care. The program addresses a lot of the issues that you bring up and that man practices are trying to address.

Maybe it will help you find the doctors who really are committed to patient care. (COI: I am working on a study that studies the process of practices becoming a PCMH)

@signalfire - I have no idea about the particular visit you have in mind, but I'll pass on something from my father regarding patients with major diagnoses. (He's been a specialist neurologist for 50+ years.) This is a close paraphrase (as close to a quote as I can remember) of what he said.

It's often useless or even counter-productive to schedule a long patient visit for the breaking of a major diagnosis. The vast majority of patients don't really register anything you say after the words "cancer" or "multiple sclerosis" or any other earth-shaking diagnosis. For years I would have patients come to me after another physician had made the diagnosis, complaining that their old physician had told them nothing, just given them the news and shoved them out the door, and for years I believed them. Until I had some physicians complain to me that I hadn't given my patients time, when I knew I had spent an hour or more discussing the implications with them. When I started paying more attention, I found that I could explain for the rest of the afternoon, and for most people, nothing registered. They were in too much shock. So now I schedule the long visit for the next one after I give them their diagnosis, so that they have time to come to grips with the word, before we add all the explanation on top of it. (End paraphrase)

Also, thirding or fourthing the idea that the Alt. medicine definition is way too broad. By that definition my husband (who is in a clinical trial), uses alternative medicine, because he sometimes uses massage and/or yoga to manage some of the joint-and-muscle related side effects of the experimental medication. Which he does because both he and the study doctor would rather he use physical management rather than adding other drugs to the mix. Neither the massage nor the yoga purport to be doing anything about the cancer at all, and there's no way we'll be pursuing any kind of alt. med treatment for the cancer proper.

A German man whose lovely wife got suckered by the "German New Medicine" version of quackery has posted the pictures of the breast cancer that took her life because the quacks had her take quackery and not medicine:

http://www.ariplex.com/ama/amamiche.htm

@#55

Ocala, FL area, per her LinkedIn.

https://www.linkedin.com/pub/mandy-lee/89/66/92a

Well, there's one small bit of comfort, Orac. A patient can't actually "go to" Leonard Coldwell (the former Bernd Klein of Germany), because Lenny doesn't actually have a clinical practice or an office to go TO, thank goodness. He has often said/written that he is "retired from seeing patients" and that he "retired" from "clinical practice" because he wanted to focus on educating people about "natural cures." He claims to have had a whole string of hospitals/clinics back in his glory days in Germany/Europe... but there's precious little evidence of that, except for a few old German newspaper clippings that he posted on one of his web sites...
http://www.drleonardcoldwellbio.com/#!mtc-centers/c1fip

(At the end of 2012 he briefly posted on Facebook that in 2013 he was going to start "seeing patients" again... but fortunately that didn't happen, as far as I know.)

As discussed previously on this blog, he has no real medical credentials anyway, only some spurious PhDs and various "naturopathic" creds. Yet he continues to call himself "Dr."

However, a patient could conceivably eschew conventional medical treatment in favor of some of the "protocols" and endless supplements recommended by "Dr." C in his numerous videos, books, and other info-frauducts. So if that's what you meant by fearing that a patient might "go to" Coldwell, then it's a legitimate concern.

But be careful what you write about him, Orac. You may be the next person he sues. He seems to be on a roll now. :-)

It's really hard to ignore what this woman is saying:http://pinkribbonjourney.co/2015/03/04/in-defense-of-jess-ainscough-the…

Charlotte @#70

I don't really understand your comment. Do you mean it is hard to ignore the writer when she mentions the terrible alternatives that Wellness Warrior faced? Or do you mean it is easy to understand her loss of faith in 'western medicine' when it failed to save the life of her fellow breast cancer sufferer? Or do you mean that you agree Wellness Warrior made a huge positive impact on her followers?

If the latter then I disagree with you totally. The effect she had will be felt by many families for years to come and they will not be celebrating it.

Aftermath: Will the "alternative health movement" learn anything from Jess Ainscough's death?

oracknows — Mon, 02 Mar 2015 05:00:13 +0000

Aftermath: Will the "alternative health movement" learn anything from Jess Ainscough's death?

It's been a rather...interesting...weekend.

Friday, I noted the death of Jess Ainscough, a.k.a. "The Wellness Warrior," a young Australian woman who was unfortunate enough to develop epithelioid sarcoma, a rare cancer, at the age of 22. I've been blogging about her because after her doctors tried isolated limb perfusion with chemotherapy in an attempt to avoid an amputation of her left arm at the shoulder, her tumor recurred, after which she chose not to undergo amputation and instead to embrace the quackery known as Gerson therapy, which she did for over two years. By the time she finished her Gerson therapy, she had become a celebrity Down Under, a frequent media fixture advocating "natural" health and a raw vegan lifestyle, fawned over by a credulous press. When her mother developed breast cancer, she, too, used Gerson therapy, resulting in her death. That's when I first encountered her.

In any event, in December, Ainscough admitted that her health was deteriorating, and on February 26, she died. My post about her death provoked far more of a reaction than I had thought it would. When I wrote about Jess Ainscough's tragic death, I expected that maybe a few of her fans wouldn't be happy. What I didn't expect is that hordes of her fans would infest the comments section, and I certainly had no inkling that the post would become one of my highest traffic posts of all time, if not the highest traffic post of all time (which it very well might end up being).

So it's with a little trepidation that I write this follow up. However, I felt the need when I saw an incoming link from a post entitled What The Alternative Health Community Must Learn From Jess Ainscough by Laura Schoenfeld, MPH, RD. After emphasizing in bold letters that this is "not an attack on Jess as a person, her character, her motivations, or her beliefs," apparently having learned from my post that no matter how polite and civil one tries to be writing about Ainscough's story and ultimate demise will nonetheless provoke nasty reactions from some of the Wellness Warrior's fans, Schoenfeld goes on to say that her post is about something that's been bothering her, the use of what she refers to as "persuasive marketing to promote diet and lifestyle choices that are purported to cure a person from any disease or health related concern." (I'm half tempted right here to ask: Is there any other kind of marketing?) In any case, she observes:

There’s a fine line between an attention-grabbing title and a title that makes people feel fear, and sometimes that line depends on the person who is reading the article. It’s a slippery slope that is difficult to maneuver in the world of online marketing. But it’s one where we absolutely must tread carefully.

Unfortunately, as more and more health “experts” enter the world of online health education, these tactics are employed more regularly and misleadingly than ever. Whether that tactic be fear or false hope, there is a lot of health information being promoted online that is not only inaccurate but potentially dangerous for certain peoples’ health. (And sometimes the inaccuracy comes from omission rather than outright falsification.)

I see it all the time in my nutrition practice where people believe that things they’ve learned about online like a super strict, “clean” diet or alternative “therapies” will make all their health problems go away, and it’s not working for them. Sometimes they’re actually worsening their health by faithfully following well-marketed online health gurus’ advice.

The first thing you need to know is that Schoenfeld runs a website called Ancestralize Me. Her business is nutritional counseling, and she appears to believe in a form of "paleo diet" to address various health concerns, including:

Digestive Disorders
IBS/IBD
Fertility and Pregnancy
Autoimmune Disease
Thyroid Disorders
Hormonal Health
Amenorrhea
High/Low Blood Pressure
Adrenal Fatigue
Blood Sugar Control
Acne and Skin Conditions
Weight Issues
Child and Family Nutrition
Blenderized Tube Feeds

True, she does say that if you have a chronic health problem that hasn't been addressed by a physician or naturopath you should do that first. Her mentioning a naturopath, given that naturopathy is a veritable cornucopia of quackery that includes The One Quackery To Rule Them All, homeopathy, is not a good sign, nor is her mention of adrenal fatigue, which is not a real diagnosis. Indeed, the public education arm of the Endocrine Society, representing 14,000 endocrinologists said as much. To be fair, I feel obligated to point out that the woo component on Schoenfeld's website appears lower than many nutritionists associated with the "alternative health community" promoting various "paleo diets" usually demonstrate, but it must be pointed out that there is at least a little woo there.

Which brings me back to what Schoenfeld thinks the "alternative health community" should learn from the death of Jess Ainscough. At the risk of being too snarky and having another horde come down and attack me, my response to that question would be that the "alternative health community" should learn that there's no such thing as "alternative" health, medicine, or diet. There are three kinds of medicine: Medicine that's been shown by science to work, medicine that hasn't been shown to work, and medicine that's been shown not to work. The vast majority of "alternative medicine" belongs to the latter two categories. The same is true of the vast majority of diets for health promoted in the "alternative health community." What Jess Ainscough's case teaches us is that there really should be no such thing as "alternative medicine" or "alternative health." There really shouldn't.

As for marketing, "alternative health" sites live and die by "persuasive marketing." Testimonials are stock in trade, particularly cancer cure testimonials like, yes, Jess Ainscough's. I note that she didn't actually make an attempt to deny that she was claiming that the Gerson therapy had brought her cancer under control until about a year ago, when it was becoming apparent to even her fans that it hadn't. Yes, she believed it, but that's what made her so effective. She believed, and she was good at making others believe her too.

So let's see what lessons Schoenfeld thinks the "alternative health community" should take away. First, there's this:

The first is, as consumers of health information online, we need to be far more critical about what we’re reading when it comes to health and wellness recommendations, and take everything we read with a grain of salt.

Persuasive marketing techniques can be powerful in communicating a message, and when that message is “do this and you’ll achieve perfect health”, it’s an incredibly dangerous one. I’ve seen multiple patients with eating disorders that developed from following the online advice they read, which caused fear and paranoia around a food as simple as a banana.

OK, this is a good lesson. It's also highly naive to think that this lesson will be learned by a significant number of people in the "alternative health community." Here's the problem. Because "alternative health" claims and alternative medicine consist primarily of medicine that has either not been shown to work or shown not to work, credulity is built in. Claims are made, but they are not made for readers to be skeptical of, as they're almost always supported not with valid scientific evidence but rather with a combination of testimonials, cherry-picked studies, and conspiracy mongering against "big pharma." The reason is simple. "Alternative health" practitioners rarely have evidence that passes scientific muster to support their claims. Either that, or they vastly exaggerate what diet and various "alternative" treatments can accomplish.

Schoenfeld warns:

Or that maybe conventional treatment like medication or surgery really is your best option, and it shouldn’t be discounted simply because it’s not “natural.” This includes everything from (medically appropriate) statins and thyroid medication, to amputation and corrective surgeries.

This is why working with a licensed medical professional (or two!) is important when trying to make decisions about your health. You shouldn’t be trying to do this alone using advice given from a health blogger with a weekend-long certification course under their belt, or from a PhD who has never worked with a single patient before.

There are hundreds of ancestral-health minded practitioners who can help guide you through the good and the bad advice you’ve been exposed to online, and to get you on a health protocol that is tailored to your unique and individual needs.

This, unfortunately, is the trap of "integrative medicine," which claims to "integrate" alternative medicine with conventional medicine. Just having a physician involved in these decisions is no guarantee that the advice won't be dangerous. Look at Stanislaw Burzynski. Look at Rashid Buttar. Look at Mark Geier. Look at Meyer Eisenstein. Look at Jack Wolfson. I could go on and on and on naming doctors who offer dangerous quackery.

Let me repeat that again: Working with a licensed health professional is no guarantee that the advice given will science-based if that health professional is a naturopath, a chiropractor, or another "alternative practitioner" or if that health professional happens to be a practitioner of "integrative" medicine. In fact, such "alternative" or "integrative" doctors tend to reinforce what the patient already wants to believe. There's a bias, in which patients interested in "alternative health" will seek out and eventually find health care practitioners who will provide them with what they want, and those practitioners tend not to be particularly evidence- or science-based.

Schoenfeld's next lesson is just as naive:

The second thing we need to learn as health communicators, whether we have our own blog or we are simply sharing information with friends and family, that we need to be forthcoming about our experience with the strategies we are recommending, good or bad.

While there is a lot of pressure on those of us who present ourselves as health experts to look perfect and have perfect health, the reality is that no one has perfect health, and often times the stress of running a business designed to help others with their health can cause it’s own problems for our health.

And:

Again, this is where conventional medicine like drugs or surgery may be helpful when diet and lifestyle are not enough. And it may even mean letting go of the idea that we have complete control over our health and physical wellbeing. Because for as much influence as we have in our health, nobody has complete control over what happens to their bodies.

Jess’s death has brought this issue to a head for me, and I felt compelled to share my thoughts on the problem I’ve been seeing more and more in the online alternative health community. We need to be mindful of the information we consume as well as that which we share with others, and make sure we are not painting a picture of our health advice being more successful than it truly is.

Give up the idea that we have complete control over our health and physical well being? Seriously? That's the very concept that's at the heart of alternative medicine, so much so that I've called it the central dogma of alternative medicine, and when you start questioning it you will not encounter a friendly reaction in the "alternative health" community.

If the "alternative health community" were to learn from Jess Ainscough's the two lessons Schoenfeld wants it to learn, to really take those lessons to heart, it wouldn't be the alternative health community much longer. That's exactly why it won't learn anything. Indeed, my prediction is that it will make excuses and turn on her for not having believed enough, done Gerson therapy correctly, or hewed closely enough to her "Wellness Warrior" raw vegan diet.

oracknows Mon, 03/02/2015 - 00:00

I have to say I know little about the medical community or the alternative health community, however I do feel that your posts on Jessica seem cruel and unnecessary. I read a few and get the feeling that anyone who doesn't agree in what you believe in believes merely in quackery. I know if I had cancer I would want the best of both worlds giving the best chance of survival. I don't ever recall Jess saying that anyone should not take on conventional medicine rather that this was her choice and it was how Jess herself decided to take on her journey. I see Jess as an inspiration in a world where fast processed packaged food is a way of life. I know also you can delete this or put me down for my lack of knowledge but not one of us get out of this life alive.
Not all of us survive but it is how we walk through the journey that matters and the lovely Jessica did so with dignity and grace.
Let her legacy of health and wellness live on for the believers.

I don't think you should 'ease off' too much here Orac, nor give the impression you regret your post in any way. Whatever her vociferous fanbase believes, your entry on 'Wellness Warrior's death was sensitive and respectful. Much more important; it was also unflinchingly factual.

To give the pedagogue too much credit just gives the impression they have power; that if they scream enough noisy outrage they will drown out your voice. I hope - and after nearly ten years of enjoying your articles am pretty sure! - this will not happen.

Aftermath: Will the “alternative health movement” learn anything from Jess Ainscough’s death?

Orac knows the answer in NO. This is because alternative medicine is largely an oppositional movement- it is opposed to anything "mainstream and conventional" even when, or liekly despite the fact, it has been proven to work. That is why many oppose even "natural" treatments such as vitamin K or even folic acid in pregnancy. It is why they will reject vaccines, while simultaneosly claiming that all mainsteam medicine wants to do is "create customers" or "treat the symptoms, not the underlying disease."

Alternative medicine is concerned with outcomes. It is concerned with protecting the ego and sense of indepence of its practitioners. Like soldiers in a war, some people are willing to die for their beliefs.

Alternative medicine is NOT concerned with outcomes. Oops.

I too was startled by this sentence:

And it may even mean letting go of the idea that we have complete control over our health and physical wellbeing.

I hadn't appreciated how strong the control-freak element is in alt-med circles.

An actual grownup will realize that there are some things that are truly beyond anyone's control -- including their own.

Yow, they're coming right out of the gate .(@1). Cruel and unnecessary? Please.

get the feeling that anyone who doesn’t agree in what you believe in believes merely in quackery.

Yeah. Orac is, actually, deeply, deeply expert in cancer therapy, from the front lines of surgery through the biology of cancer. He's remarkably evenhanded, I've found, but also calls things as he sees them.

The more I read these comments, the more I'm reminded of the three premises put forth by the great Charles Pierce, in his fine book Idiot America:

The three Great Premises of Idiot America:
· Any theory is valid if it sells books, soaks up ratings, or otherwise moves units
· Anything can be true if someone says it loudly enough
· Fact is that which enough people believe. Truth is determined by how fervently they believe it.

If for one moment we consider what her fanbase believe - as expressed through their posts here - it seems they truly desire no criticism whatsoever of 'Wellness Warrior'. It seems even simply repeating her widely broadcast opinions and views is unacceptable. Even letting her words speak for themselves when contrasted against the true outcome of her illness is 'cruel'.

So... What exactly? What would be the right way to record and comment on her death? Express sympathy for her family? Done. Express sadness at the event itself? Done. Give absolutely no criticism of her public life and image at all, ever? Sorry. No. That cannot and should not be done.

I don’t ever recall Jess saying that anyone should not take on conventional medicine rather that this was her choice and it was how Jess herself decided to take on her journey.

I don't know how people keep missing the fact that Jess went beyond "her choice" and "her journey." She did interviews, sold books, promoting "her journey" as something that cured her cancer. http://mobile.abc.net.au/news/2010-04-07/33482

I am sorry she died, nobody should suffer like that. And good for her for autonomy. But she denied others autonomy after she fell prey to Gershon and proceeded to make a living off selling lies even after it became clear that maybe her cancer was advancing. She may have advised people to make their own decisions, but she also provided plenty of false hope that hers was a medically valid one.

I don’t think you should ‘ease off’ too much here Orac, nor give the impression you regret your post in any way. Whatever her vociferous fanbase believes, your entry on ‘Wellness Warrior’s death was sensitive and respectful. Much more important; it was also unflinchingly factual.

I'm not backing off. I was just expressing amazement at the attention my previous post received. When I wrote it I didn't expect anything like the level of attention it got.

In actuality, I think the "alternative health community," in particular a group of quacks, egged Jess on and took advantage of her. Now that she's dead, they're doing their best to distance themselves. In essence, they used her and now that she is no longer of any use are making excuses and trying to make sure anything embarrassing she's said goes down the old memory hole.

we need to be forthcoming about our experience with the strategies we are recommending, good or bad

I'd like to live in that world, too. But as Richard Feynman noted, it's easier to fool yourself than to fool anybody else. A point which Kruger and Dunning later demonstrated. A few people will start down the path to woo and realize their mistake. Many more will never understand that it was a mistake.

In actuality, I think the “alternative health community,” in particular a group of quacks, egged Jess on and took advantage of her. Now that she’s dead, they’re doing their best to distance themselves.

Too true Orac! That started the moment someone commented she had not been doing 'the orthodox Gerson' in response her last post in December. It suddenly became her fault.

That is what makes the indignant moral-panic about criticism so tragic from her fans. The real culprits have already cynically scuttled away and her supportors are soon going to find themselves alone.

I certainly won't be holding my breath for proponents of the "Alternative Health Movement" to step back & cogitate on the implications of the death of Jessica Ainscough (or the plight of those like her) either.

Was her death a tragedy? Of course. I feel the deepest sympathy for her remaining family.

As countless others commented over the weekend, though, of course her body was hers to do with as she pleased. I still don't quite get how so many of her supporters & other concern trolls failed to discern that skeptical people could believe in "her right to choose her own path rather than 'Big Bad Pharma'" (etc, etc) and simultaneously disagree with her promulgation of unproven quackery, for profit, to a worldwide audience. It makes no difference how "sincerely" one believes in quasi-medical nonsense if they are promoting it to thousands of people, the majority of whom they never meet or lay eyes on, without having first thought of the possible consequences.

I personally found Friday's blog to be respectful yet objective. It was clearly not written for grieving family to read. I find it rather strange that no venue was left open either on Ms. Ainscough's blog or FB account for her friends & acolytes to leave messages of condolences. I am sorry for the sh!t-storm Orac has been subjected to over the weekend, with some extreme comments coming from, er, "both?" sides... I don't imagine you will be cowed by such vitriol - but I would like to reiterate that I hope you never are.

In reading the comments on Friday's post (I now see there are another 200 or so since I last read it) it seems this was the first time any of those commenters have moved into the deep end of the pool (i.e. science-based), and have no concept of what constitutes evidence-based arguments.

Not only can't they make evidence-based arguments, they don't either don't recognize an evidence-based arguments when they read it, or they don't recognize how much more valid it is than their baseless opinion.

This also means they don't recognize how their opinion has been completely dismantled; nor do they recognize their opinion was invalid from the start due to the logical fallacies they worked into it.

It was people like this that inspired Kruger and Dunning's work. I know comments like this are old news, but when reading a whole slew of them at once in the same place about the same subject, it just struck me anew how ill-equipped they are in critical thinking skills in an evidence-based environment.

@ Michelle

I read a few and get the feeling that anyone who doesn’t agree in what you believe in believes merely in quackery.

It's not just a competition of opinions and beliefs, Michelle.
It's about which beliefs are supported by facts, and which aren't.

If you ask nicely, Orac's hospital can provide you with how many people came to the oncology service with such-and-such cancer, and which proportion of them are still alive 5 or 10 years later.

With the people we call quacks, we keep asking, and only hear back (if at all) of some people who were still alive a few years after treatment. No idea how many were treated but didn't survive. I'm not implying "killed by the treatment"; what I want to know is the success rate. Did this alt-med stuff worked 9 times out of 10, 5 times, 1 time? Details are lacking.
Worse, in some cases, like this Gerson treatment, there have been clinical trials testing them. And the results were consistently negative.

Every day, there are wonderful news from scientifics, doctors, engineers, even laypeople about some advance in one field or another. We are sending probes in space to explore planets and comets, there are companies building giant robots or dorsal jetpacks, we are finding natural molecules with therapeutic effects in the weirdest places... Show me it works, and I have no trouble "believing" in it.
But if the evidence that something is working is absent or worse, evidence exists it's not working, I would, like Orac call it quackery.

My life is my own choice, right? I can do whatever I want with my body, can't I? So I assume none of Jess' apologists would mind if I chose to end my life by blowing myself up in a middle of a busy street in their city?

Orac, re your post #9:

"I’m not backing off. I was just expressing amazement at the attention my previous post received. When I wrote it I didn’t expect anything like the level of attention it got."

I think part of the reason it attracted so much attention was because Jess Ainscough's websites were all shut down and all the people who would normally have gone to those outlets to express their grief were denied the association with like minded followers.

I think very likely when they did web searches trying to find info about her death and your blog came up top or nearly so, and they they went to it and found your rather less than admiring comments, a lot of people probably kind of exploded, or imploded, or something. I really wish her family had left at least one of her websites up for her fanbase to congregate at.

When I was diagnosed with cancer a number of years ago, I was taken aback at the appallingly, ignorant perceptions of people who espoused “alternative medicine”. I was deluged with people advising me to avoid conventional treatment at all costs and, instead, advised to drink wheatgrass juice, have regular coffee enemas, take laetrile, embrace ayurvedic medicine, and follow an alkaline diet. I was , also, told that I had to remove any- and all amalgam fillings (I don’t have any), as well as any root canals (ditto), as these, “undoubtedly”, contributed to my cancer, but it was imperative that I find a dentist who would remove these “poisonous” teeth without crossing the meridian lines. Detoxifying my liver was a must; so, too, was cupping (cupping? Wait, that thang barbers did in the Middle Ages to blister the skin? Apparently!), reike, candling, chelation therapy, and acupuncture. And, for gawd’s sake! I had to stop having a flu shot. All of these things, I was assured, would cure my cancer without the need to subject my body to the “barbaric cut, poison and burn” that my doctor was going to recommend. If I went the conventional route, I was told, I was sure to die because somebody’s aunt’s cousin’s, brother’s, best friend’s niece went this route and died, but their uncle’s, friend’s, sister’s daughter went “alternative” and thrived.
This, of course, just touches on the surface of what I encountered over the course of my own cancer treatment. I won’t even get into the ridiculousness of the BIG PHARMA conspiracy theories and the people who believe them as that would take too much time. However, what disturbed me the most (and, believe you me, the thought of “cupping” as a genuine treatment for cancer disturbed me greatly!) was not only the completely non-critical, means by which supporters of alternative medicine accepted their beliefs, but by the irrational- and disjointed thinking they used to advocate for it. For me, it was unbelievable that people in this day-and age would believe in such rot. But, heaven help us! If it appears on the internet then it must be TRUE!!!! It has led me to the sad acceptance that ignorance, mass hysteria or, as my dear late grandmother would say, “… the lunatics are running the asylum…” is permeates our current healthcare system. (And before someone accuses me of insensitivity towards people with mental illness, let me reveal that I have personal experience with the condition, as well.)
I found orac after a friend sent me a link to his famous “coffee enema” blog. I laughed until I cried, but – in some ways – it was laughter through tears. Yes, he poked fun at the whole coffee enema regimen of Gerson, but it also highlighted the complete and utter ridiculousness of using a coffee enema for “wellness”. I found that I was not the only one out there (and, for a while it seemed I was) that found the whole alternative movement appalling and the people who advocated for it more so. I, also, found out that there were others, like me, growing increasingly concerned at the growing influence of the movement, the treacherous encouragement of those advocating for it, and those despicable people who make millions from it and the deeply vulnerable people who go to it as a last resort.
I continue to read orac because I agree that we need to continue to “out” various alternative therapies for what they are. Or rather for what they are not: they are not based in any kind of science; they are not based in any kind of reality; they are not based, even, in the natural world in their complete negation of basic biology, chemistry, and botany. At best, they are harmless belief systems; at worst, they kill. Does someone have the right to follow an alternative path. Absolutely. Do they have the right to influence others to do so? Absolutely not.

I'm not sure that the "alternative health movement" as a whole will learn anything from this lady's tragic death. There are too many hard core believers and too many commercial interests to see it shut down completely over a single event.
The best we can hope is that it opens a few more eyes here and there and steers a few more vulnerable individuals away from a dangerous and misleading path. The high profile that Friday's post has gotten along with the informed and measured posts of the pro-science folk versus the vitriolic randomness of the alt meds should go a long way to achieving this.

I'm not surprised by the response to that last post. In fact, it is EXACTLY the same thing that Amy Tuteur hears/sees when she posts a story about a homebirth death.

MASSIVE response with a bunch of parachuters, with standard tone trolling, claiming
1) It's mean spirited, to attack a victim like this
2) It's too soon (although her responses are usually at least a week or more after the fact because she works hard to verify as many facts as possible; it just supports the objection of when is it long enough?)
3) The family is grieving, leave them alone (because posting on a personal blog is somehow affecting the family's mourning)
4) Babies die in hospitals, too (like "people who do chemo die, too")
5) You're just part of Big Pharma
6) It's a personal choice and everyone has a right to choose

These are all displayed in the comments to the last post. However, one additional comment that Amy gets that I haven't seen here that I can remember is

7) You don't have the author's permission to talk about the story.

This would be if people were claiming that you didn't have Ainscough's permission to use her comments from her posts.

But other than that, this is exactly what happens over at her blog.

Orac, I really wish you and Amy would bury the friggin hatchet and realize that you have far, far, FAR more in common than the petty differences between you. Recently she's even been fighting the anti-vax nuts. She's not as effective at it as you are, but she's going after them, and getting visits from the big anti-vax trolls. You really need to start working together and supporting each other more.

(and I've told her the same thing)

I said the below not too long ago, but it's applicable here, too, as regards commentary on Jess Ainscough:

There are no heroes, no martyrs, no saints.

Insofar as Ainscough's public persona and the material she chose to promote propagates the acceptance of useless and/or harmful quackery (coffee enemas, really!), that persona and those choices merit criticism.

They merited criticism a year ago, two months ago, the day she died, the day after, and so on.

In actuality, I think the “alternative health community,” in particular a group of quacks, egged Jess on and took advantage of her. Now that she’s dead, they’re doing their best to distance themselves.

This always happens with quacks. Whether it's Burzynski's "success" stories or HIV denalists who suddenly die from something that looks suspiciously like AIDS, once the poster child passes away there's a concerted effort by the charlatans to wash their hands of them. It's appalling.

And to be clear, Jess Ainscough is not blameless in this, despite the tragedy or her passing. Spin to the contrary by her supporters/paid spokespeople, she did misrepresent herself as someone who had beaten cancer (or at least one thriving with cancer) using natural methods. It was the primary reason she had "credibility" within that community and why people bought her books or paid to hear her speak, and people should not kid themselves otherwise.

"This always happens with quacks. Whether it’s Burzynski’s “success” stories or HIV denalists who suddenly die from something that looks suspiciously like AIDS, once the poster child passes away there’s a concerted effort by the charlatans to wash their hands of them. It’s appalling."

Too right, a-non. A dead person is not much of an advert for a wonder treatment so the sooner they are removed from the picture, as far as some quacks go, the better. Too many people have been manipulated to death by purveyors of magic therapies. What Orac said on Friday needed saying.

As for where blame lies, that's harder to pin down. There was a comment about control earlier. I'd like to add the "You can have it all" attitude. The idea that anyone can achieve anything usually doesn't mention the important bit: "You can have it all but you have to work damn hard to get it." Alternative medicine promises a short cut to wellness.

"You're being mean" is always the final retort of a failed movement.

Yvette #4, you do alternative medicine a grave disservice. It IS concerned with outcomes - as long as you assume that the outcome is fleecing the gullible and desperate as efficiently and comprehensively as possible.

@Fragmeister #23

Alternative medicine does promise a short cut to wellness, but the funny thing is that often times it really isn't any easier that the conventional method.

Take Gerson for example. From what I can gather, it's a pretty time consuming exercise to follow that regimen. And while I grant you it may not have the same short-term side effects as a round of chemotherapy, in the long run it seems like an awful lot more work to wellness. Even getting beyond cancer - most of the alt-med dietary plans I see, for example, are often more restrictive and difficult to deal with than any plan I've been given by a doctor or a nutritionist who works with one.

So in some ways, I think the opposite is true. By making their programs difficult and time consuming (while still making grandiose promises), the alt-medders can actually *become* your life. And that makes it all the easy for them to make you a devoted follower.

@a-non: Not to mention the isolation from the rest of the world caused by following the time-consuming treatment. A large number of these comments seem to suggest that Gerson's supporters have no idea how the world operates anymore.

What really stands out to me in reading the posts the past few days on Ms Ainscough's passing, is how SO MANY people equate ANY level of criticism as appalling and arrogant.

For those holding that belief, do you REALLY think that it is proper to declare any and all criticism of her actions despicable?

This argument is rooted in a begging of the question, in assuming that what Ms Ainscough was promoting is valid and useful.

Sit back for moment. Presume for a moment she was wrong. If she is wrong, should we simply ignore that she has encouraged others down the same wrong path?

All of this rage over criticism of Ms Ainscough seems very religous and cult like. How dare anyone criticize 'the One'. It's eerily similar to those who demand that everyone blaspheming Mohammed needs to shut up. It's anti-intellectualism.

So if anyone reading this finds themselves in that camp, I implore you to sit back and evaluate things. Those of us here who champion SBM are human too. We have relatives and children and friends we love and care about and we don't want them being harmed by disproven and ineffective ideas. We aren't pharma shills. We all want the most effective treatments for the most people possible.

It's a scary thought, getting a limb amputated, but honestly, I think I like the idea of cutting out a cancer better than doing the Gerson Protocol. At least cutting off the limb would end the thing and I could go get on with my life. Plus, of course, it'd *work*.

I think it's very sad that Ainscough was taken advantage of by quacks. It resulted in her death and her mother's death, and now they are trying to distance themselves from what is to them a failure, becuase they never cared about her. They cared about her marketing potential. They're exploiters in the truest sense of the word.

I think it is the media manipulation that really sticks in my craw.

'Oh, you think the MedicoPharma complex doesn't make money?'

Yes, it does. But we can all see the bonafides, the concrete results and judge for ourselves. 'Wellness Warrior' didn't offer her followers the same courtesy. Until the announcement of her ridiculously labelled 'healing hibernation' the majority of them believed the various nostrums she peddled and promoted had at the very least arrested her disease.

Yes. There have also been cases where evil PharmaCo has fudged the results for financial gain. But they are in the colossal minority. Moreover, the wider data of all drugs, all interventions are available for anyone to read, to learn the terms and judge for themselves in cold technical language.

'Wellness Warrior' was a young and strikingly beautiful woman, she was personally charismatic and spoke publicly very well indeed - even about the inevitably embarrassing realities that attend Gerson. She did not win adherents by proving facts to their rational minds but appealing to their emotions. And at some point she must have realized, simply MUST have come to the horrible conclusion that all her arcane tomfoolery was doing nothing whatsoever to help her illness. Yet... Did she change her tone? Did she become an evangelist for sanity in the short time she had left? Did she attempt to lead the cancer victims among her followers away from self destruction and back towards something that might give them a chance at survival? She did not. Even in her last post she was using meaningless, facetious terms and championing the same old worthless quackery.

THAT is just something I cannot get over. I cannot even understand it,

Alternative medicine does promise a short cut to wellness, but the funny thing is that often times it really isn’t any easier that the conventional method.

Ben Goldacre has touched on this - the idea that the current understanding of nutrition and a generally healthy diet is pretty straightforward, and it's the quacks who pile on the excessive complication...

Reading all of the comments on the last post was very educational for me. But not all in a good way, I suppose.
I have been dating someone for the last 7-8 months that is anti-gmo, anti-big pharma, etc. and until the last week or so I had been just ignoring that part since we get along otherwise. But, I finally had to make a comment last week when she was almost crying because she could not buy her crackers without soy, gluten, etc. I started trying to explain to her that what she had been told about those things was not correct and she sent me an article by Mercola of all people. After 4 days of going back and forth and me hearing her repeat all the woo arguments I was reading on the last thread, ignoring the science-based responses and such, I have come to the conclusion that I just am not going to be able to get through to her. Bummer, I am going to have to just let go of this relationship and try again.

I feel that the lesson alternative medicine and it's fan club should learn is bess expressed by
http://xkcd.com/836/

Money quote -

I find courage where I can, but I take my weapons from science. Because they work, bitches.

If there was an Official Cartoon of SBM, I'd think that that one would make the short list.

I read Ms Schoenfeld's article yesterday and found I generally agreed with what was said. She said people need to be absolutely honest in reporting their observations, and that is good advice for anyone. What she neglected to say was that it is very difficult to get useful results with a small sample size and no repetition - which is what personal testimonial comes down to. The alternative medicine community would do better not to rely on these.

I didn't say that I necessarily disagreed with Schoenfeld's points. I just found them to be wishful thinking. The "alternative health community" will not learn either of the two lessons she hopes it will. And, as you point out (and so did I), alternative practitioners rely on confirmation bias-prone testimonials to sell their wares. That's not going to change any time soon.

Regarding the angry responses to your previous post on Jess Ainscough's death:

If someone is killed while playing Russian roulette and you say, "Folks, putting a gun to your head and pulling the trigger is a bad idea", would people say "He was a kind soul and how dare you disrespect his memory by telling people not to play Russian roulette?

If someone is killed while playing Russian roulette and you say, “Folks, putting a gun to your head and pulling the trigger is a bad idea”, would people say “He was a kind soul and how dare you disrespect his memory by telling people not to play Russian roulette?

Let's grab a more realistic example even.

Suppose someone dies in a drunk driving car accident, and you say, "Hey folks, don't drink and drive!"

How many people would counter with, "Please let the family grieve in peace and not say bad things about drinking and driving"?

If MADD were to use it as an example of what happens when people drink and drive, do folks flood their websites complaining about how sober people die in car accidents, too?

MO @34: "At least with p<0.05 confidence."

@15 reminds me of a quote from the British TV series that birthed Orac: " It is considered ill-mannered to kill your friends while committing suicide."

I'm a cancer patient who's been alive and thriving for the past six years thanks to my doctors and their proven, conventional treatments.

I'm beginning to bristle at the alt-med crowd's stigmatization of cancer patients. According to them I'm some sort of freak. According to them I'm doomed and too stupid to realize my doctors are disfiguring me and poisoning me.

Get real. You see cancer patients who are doing well with conventional treatment every time you go to the store, or a restaurant, or a movie. We look like we're ordinary people living ordinary lives because that's what we are. You won't know we have cancer unless we tell you.

If someone is killed while playing Russian roulette and you say, “Folks, putting a gun to your head and pulling the trigger is a bad idea”, would people say “He was a kind soul and how dare you disrespect his memory by telling people not to play Russian roulette?

Given what's been said here, I believe there are people who would. They'd also say, "you don't know what inner demons drove him to that" or "he was suicided by the CIA" or "he may have pulled the trigger but Big Pharma provided the bullet" or "what are you, against the Constitution?" or "it is wrong to speak ill of the dead."

@a-non:

Alternative medicine does promise a short cut to wellness, but the funny thing is that often times it really isn’t any easier that the conventional method.

Some of that could be a side effect of 'people don't value what they can get for free'. Make it more difficult and/or expensive, require some effort to actually do it, and people will tend to assume that it MUST work because of what they're being charged for it. It also adds to the investment of personal image, in that if they're wrong, they've wasted a whole lot of money as well.

“You’re being mean” is always the final retort of a failed movement.

Very close, but I to get the full flavour of fail it needs to be "Your being mean".

@jenora feuer #42

Some of that could be a side effect of ‘people don’t value what they can get for free’. Make it more difficult and/or expensive, require some effort to actually do it, and people will tend to assume that it MUST work because of what they’re being charged for it. It also adds to the investment of personal image, in that if they’re wrong, they’ve wasted a whole lot of money as well.

You're sort of describing commitment bias, where people will make increasingly illogical decisions to justify a previous commitment. Seems like it's the type of behavior often exhibited by those who end up dabbling in woo.

When that guy who crusaded against motorcycle helmet laws died of head injuries suffered in a motorcycle crash, it was insensitive and mean to react by saying that helmet laws are a good thing.

I mean, it was his choice, they should have let the family grieve, and besides, motorcycle riders wearing helmets die in crashes all the time.

Very close, but I to get the full flavour of fail it needs to be “Your being meen”.

FTFY

With all due respect to Dave & MM, My I believe that should read "YOUR BEING MEEN"

*MM, M not MM, My

You’re sort of describing commitment bias,

I knew there had to be a name for it.

Actually, my first exposure to the first part of my previous comment (that people often value more what they paid more for) was from a children's book, of all things: Henry Reed, Inc., written in 1958. They're selling turtles, and Heny's 'business partner' puts different prices on the different turtles because some people want to feel like they've got a good deal, and some people will just assume that the more expensive ones are worth more and want to get the best.

My earliest exposures to the concepts of cognitive biases and critical thinking came from reading the Henry Reed books and the Great Brain books over thirty years ago.

Seems like it’s the type of behavior often exhibited by those who end up dabbling in woo.

Or buying high-maintenance pets.

@ Jenora Feurer:

There's SB research on that phenomenon through attribution theory. I can't recall any names but it might be worth a look around articles hat detail attribution.

THAT detail attribution

Yes, yes, and yes. And the part about challenging them is sooooooo spot on. For a group that wants people to 'question' everything, they sure as hell don't like it when question their protocols.

This woman LIED. She outrighted defrauded people as cancer withered her arm. She hid her lesions so she could continue to get wealthy. She lied about what was causing her arm to deform when people confronted her in it.

She traded her life for four years of fame and fortune, watched her own mother die as a result of this snakeoil, led thousands of others away from effective treatment by knowingly lying to them, and we are supposed to be kind and "respect her decision"?

She is a shining example of what happens when people buy into conspiracy theory Big Pharm nonsense, and bad science.

People die because of this crap. Too many die needlessly.

"...those of us who present ourselves as health experts..."

I find that people who refer to themselves as experts rarely are. Certainly orac is an expert on cancer but I don't recall him ever explicitly saying that. I also think it's funny that she said "present ourselves as health experts" as opposed to "are health experts."

At first I thought good for Ms. Schoenfeld; at least she's calling for reasonable changes. The more I think about it the more I think I fell for the trap she set. Has she stopped peddling her particular brand of woo? Nope. But now she appears reasonable and seemingly distanced from the dangerous quacks (is there any other kind of quack?). Really I think Ms. Schoenfeld's article is a terribly insidious exploitation of a young woman's death in an attempt to improve her own image.

Also, my last comment (#38) was in reference to Johnny @33 not MO @34. It was the title text from that xkcd comic.

I'll never understand those who want to relive the Paleolithic days. They all died by their mid thirties.

I have a problem with this sentence:

"I note that she didn’t actually make an attempt to deny that she was claiming that the Gerson therapy had brought her cancer under control until about a year ago, "

Written that way, it could be read that the Gerson therapy did bring her cancer under control until about a year ago. A better way of phrasing it would have been:

I note that she didn’t actually make an attempt to deny that she was claiming, until about a year ago, that the Gerson therapy had brought her cancer under control "

The rest of the blog, of course, is 100% spot-on, including your pessimism about whether the alternative medicine crowd will allow anything to penetrate the solid bone many of them use for heads.

"This woman LIED. She outrighted defrauded people as cancer withered her arm. She hid her lesions so she could continue to get wealthy. She lied about what was causing her arm to deform when people confronted her in it."

Spot on. The picture at the top of this article is a perfect example of it. A carefully orchestrated shot of her looking healthy and happy, surrounded by nice possessions and a happy pet implying all is well.

And yet her left arm is nowhere to be seen. And just to be clear, I am not besmirching her for being happy or having nice things. It's the intentional misrepresentation.

To elaborate on my previous comment:

The first is, as consumers of health information online, we need to be far more critical about what we’re reading when it comes to health and wellness recommendations, and take everything we read with a grain of salt.

No, no, no. First, you need to stop the false advertising. Not persuasive, but false. Lies. Schoenfeld included. As Orac noted, adrenal fatigue is a quack diagnosis. She's as much of a con artist as the other alties she's criticizing. Sure it would be great if more people took a more critical approach to evaluating what they read but the real problem are the liars like Schoenfeld who peddle quackery as real medicine.

The second thing we need to learn as health communicators, whether we have our own blog or we are simply sharing information with friends and family, that we need to be forthcoming about our experience with the strategies we are recommending, good or bad.

Again, no. We need to practice based on evidence, not personal experiences. This is sidestepping the real issue. What alties need to do is not present negative anecdotes along with their positive ones; but to stop relying on them altogether and present evidence instead.

I hate having to be the one to tell them that their diet may not be enough to change their health, and that certain health problems cannot be entirely solved by adherence to a strict diet and lifestyle protocol.

Emphasis mine. This is a very weasel wordy statement. may not implies there's a chance it could, entirely implies that they can be at least partially solved.

This includes everything from (medically appropriate) statins and thyroid medication, to amputation and corrective surgeries.

Medically appropriate here seems like another weasel statement to me. Why does statin use have to be qualified? Does Schoenfeld think she knows better than the AHA as to what is medically appropriate? Seems like an appeal to the Big Pharma conspiracies.

There are hundreds of ancestral-health minded practitioners who can help guide you through the good and the bad advice you’ve been exposed to online, and to get you on a health protocol that is tailored to your unique and individual needs. (Check out PrimalDocs.com or PaleoPhysiciansNetwork.com for a list in your area.) Don’t try to do all of this on your own without at least one other objective opinion.

Of course PrimalDocs.com is an objective source. Le sigh. What really gets me is that Schoenfeld uses Jess' death to paint herself as reasonable and promote her particular brand of bullshit all well sidestepping and drawing attention away from the real issue of the lack of evidence supporting alternative treatments as safe and effective.

The quacks have both a financial and emotional investment in their delusions, with minds rusted shut to the possibility that they could be wrong. It was the recognition of, and because of muddled human thinking, that the scientific method was developed.

Orac, I think the reason you've been inundated with comments from defenders of Jess is the fact that because her "team" so swiftly and thoroughly removed her blog/FB/Twitter/Pinterest from the net, when her name is Googled, your post comes up high /or first in results.

People are probably Googling her name, wondering where her bkog/FB have gone.

I felt profound sadness when she died. I am also angry that the deception continued until the end, although the cracks had started to appear in her last blog post.

Even 2 days before she died, her team were telling people who enquired on FB, that she was doing well, and would be back blogging soon with wonderful new ideas.

I have to agree about with "Marry Me" about Dr. Amy Tuteur. That comparison was spot on. Your posts are a lot more informative science wise-but hers are perfectly designed for the lay people she targets. Your posts have made me laugh out loud, while hers inflame me with a righteous anger. But she is doing a heck of an important job out there. She (for lack of a better term) trolls and exposes nonstop, all the while keeping up to date on the latest developments in the ob world. She is excellent at parsing statistics and medical situations for the average Joe (Jane) out there. I rarely comment on either board (the other posts are so good I don't feel the need to) and spend a lot of time learning. It would be great if the "hatchet" were buried.

Orac I'm sad to say I think the answer to your question is "no". Where do you even start responding to this?
www.tarabliss.com.au/jess-ainscough/

Sorry if the link does not work.
I hope more of us get , including Jess' followers keep reading and thinking about what you have written, and I know for more than one of us - having that information out there saves lives.

The ole confirmation-bias - if the witch be bound and floats, the water was pure and repelled the evil spirit, she was indeed a witch. If she sank and drowned, yes, indeed she was innocent.

Maybe the alternative health movement has fungus in their breads?? or they have all-natural organic free-range neurosyphillis.

Or even how to respond to this.
http://soulfulwarrior.com/2015/03/what-does-it-mean-to-be-a-warrior/

Joan of Arc? seriously?

The quacks have both a financial and emotional investment in their delusions, with minds rusted shut to the possibility that they could be wrong.

The dangerous thing is that it isn't only the quacks who feel this way. Many of the people who subscribe to quack treatments have that same investment. Victims of a con man often don't want to believe they have been conned. That's one of the things that has let Burzynski and his ilk stay in business, and it applies equally to the fans of Ms. Ainscough who wandered over here to complain about Orac's previous post. We all like to think that our intelligence, like that of Lake Woebegone's children, is above average, and most humans are quite good at ignoring evidence to the contrary.

This may not be relevant, but the "complete control of our own bodies" remark kind of made me think about myself. I am an avid cave and wreck diver, and I have quite a bit of experience with technical climbing. However, I cannot even imagine bungie jumping. I do not have a natural fear of heights, and I know perfectly well that my risk of death is hundreds of times higher cave diving than bungie jumping ever is. But it is about perception of control. I go down into a cave feeling that if something happens, it will be because I made a mistake. If I do a bungie jump, I am trusting my life to a person I do not know and gear that is unfamiliar to me. I know that in terms of actual risk, I am deluding myself to some extent. But there you go.

#1 Michelle:

I believe you mean well, but some of us living with chronic disease, including some "Western Medicine" (the medicine that currently exists) has nothing to offer for would differ.

We'd put the message in much stronger terms, perhaps thinking less about Jessica's tragic circumstance (she certainly did not invite or deserve the onset of a rare, often fatal disease), and more about the deceptions of quack-ternative medicine. Why? Because even if medicine is weak or incompetent to deal with the disease we have, wasting time and money on quackery which does at best nothing and quite likely makes matters worse sets us back further.

Quackery has a very sophisticated marketing campaign and can be seductive; there are enough forms of it that one matching something you or I could fall for most likely exists.

Gerson, which Jessica fell for and later promoted herself using the deception that it was working, isn't merely harmless quackery, it's a brand of crazy designed to punish you for being sick and make your remaining time on Earth miserable while insuring that any chance of cure you did have is discarded. It isn't natural, healthy, or even harmless. Adherence to it sealed Jessica's fate and will do the same to the next person in her predicament.

It's like giving the last advisory to a non-Mulsim multiculuralist about to wander into ISiS territory: A few mild words to the effect of "Well, it's your choice, but did you know that camels smell bad?" is not a compassionate tack.

Looking at the picture at the top of this thread has got me thinking, I really want a French Bulldog.

I'm very skeptical of alternative medicine, but I think this article is very stupid because it commits the same error as the promoters of A.M. so often do.... draw conclusions from a single incident. Nobody can say with any certainty that amputation would have saved this woman's life. Her death proves absolutely noting about the effectiveness of neither mainstream medicine, nor alternative medicine.

#56 Realist
"I’ll never understand those who want to relive the Paleolithic days."

They're thinking of Paleolithic as a full scale "50,000 years BC", with Raquel Welch being fixed at age 24.

Karl, nobody can say amputation would have saved her, you are right. And if you'd paid attention, you'd see that Orac acknowledged that. What we do know is that the alt med she kept claiming was curing her was doing nothing of the sort. Her death proves nothing, as it's an isolated N of 1, but it's a very potent cautionary tale to illustrate the extensive science we have that *does* prove that Gerson's is completely worthless.

Karl:

That's the fallacy of the excluded middle. Jess Ainscough had another reasonable option: keep her arm, and live her life more or less as she had been before the diagnosis for as long as possible, helped by palliative care as appropriate. At minimum, that would have given her two years to actually work, travel, party, or otherwise enjoy life, instead of being effectively homebound by the Gerson protocol. Doing absolutely nothing for or about her cancer would have been better for her than the regime of coffee enemas and constant juicing.

Is there any reason to think she would have died sooner if she had spent her time eating junk food and partying a lot? Aside from the risk of a drunk driving accident, that is.

It would have probably been a lot more fun.

Yes, they will; monetizing human suffering pays dividends. They already know that; but these tragic circumstances of a woman in her prime HAVING HER FUCKING ARM ROTTING OFF will reinforce their commitment to brand identity.

I try to keep up with the comment threads here, but don't have time to comment as much as I used to.
But, I'd like to put in my 2 cents worth with two points.

1. I doubt if 99% of the alt med advocates will change a thing after Jess's death. But, I think there are a few like Schoenfeld who will think seriously about how their ideas and recommendations mesh with science based treatment for serious diseases and perhaps modify their approach as a result. From my reading of her blog, it seems that she is considering doing that.
And if I can do so without descending into tone troll territory, I think it would help the cause of science based medicine for us to take a different approach with those like Schoenfeld than we do with the full-on anti-scientific advocates like Buttar, Clement, Burzinski, etc. and their facilitators like Oz, Adams, Null and their like.

Polite words won't change their actions one whit, but raising the full-on science and nothing but science flag when we engage with people like Schoenfeld may have the negative effect of driving away potential allies.

2. I don't think diet and nutrition get enough support in the standard medical care system in the U.S. I'm old enough to be on medicare now and the only time I was specifically referred for detailing training and follow-up was the last year of my Air Force service when I was placed on a plan to lose weight. That training relied mainly on the American Diabetes Association's recommendations and, with some updates, has helped me lose a lot of weight in the last 4 years. But, after my wife's heart attack 3 years ago, she was referred for physical therapy and put on an exercise program which she has continued on her own with good results. But, for diet and nutrition she got some printed handouts and a one-time speech at the therapy location.

I encourage the many of you who are currently engaged in medical practice to correct me.
But, I think too often diet and nutrition, although science-based, can fall through the cracks in our medical system. And this leaves the patient on their own in trying to distinguish between strictly science-based recommendations, mostly science-based with a few flaky aspects such as Schoenfeld makes, and the readily available mixture of confusing and contradictory BS that can be found at dozens of health food or nutrition centers, is all over the internet, and is most of the "medical" content on broadcast TV.

I came across your two articles, very insightful, having had cancer, surgeries, blah blah blah.
I found it refreshing to read a piece of reason.
so far as I know there is no cure, just remission and removal.
it pains me to read all the alternative health people just ignore facts.
just the idea of promoting panaceas, gets me upset.
but you know what, people will never change, there will always be a set that buys into the snake oil.
anyway good piece.

Sarcoma website-
www.sarcomahelp.org/epithelioid-sarcoma.html

sarcomahelp.org/epithelioid-sarcoma.html

I do not have a natural fear of heights, and I know perfectly well that my risk of death is hundreds of times higher cave diving than bungie jumping ever is. But it is about perception of control.

I think that's the point of bungee jumping. The whole Nutty Putty story also kind of stuck in my head, in the sense of Oh, G-d, why did you remind me of that?

Where do you even start responding to this?

What was the ABV of the kombucha?

99% won't and never will. From NN aka natural nut Mike Adams via the stupidity and downright dangerousness of Ethan Huff ''Chemotherapy kills cancer patients faster than no treatment at all'' http://www.naturalnews.com/048827_chemotherapy_cancer_treatment_patient…

I think you should do an article on a person who has died even though they have received chemo. I know of many of my family members who have died from cancer despite the fact that they went with mainstream medicine. And I also know a friend who went off mainstream medicine to treat her Grand mal seizures and was told she wouldn't live without the mainstream medicine. 30 years later, she is living and she is without seizures, however, lives with migraines. I think people should heal themselves through any means they choose without having to be condemned by anyone. There are many doctors or quacks that are good and bad regardless of mainstream or unconventional methods of medicine. I don't think it was a wise decision to burn witches at the stake do you?

Search for the names "Patrick Swayze" and "Farrah Fawcett" in the search box of this blog.

Oh, and I wrote quite a bit about Steve Jobs, too.

Seriously, you just leap to conclusions, don't you?

Karl Bjornsson #70

Wrong, the surgeon and oncologist will look at the data and tell her the facts. From this site http://www.bonetumor.org/tumors-fibrous-tissue/epithelioid-sarcoma ''The local recurrence rate is approximately 35% and the rate of distant metastasis is about 40%, with the regional lymph nodes and lungs being the most common metastatic sites. Metastasis to regional lymph nodes occurs in 25% of cases. Five and ten year survival is 70% and 42%. Prognosis depends on various factors, chiefly the sex of the patient, the depth of the tumor, the number of mitotic figures, and the presence or absence of hemorrhage, necrosis, and vascular invasion. Moreover, tumors in the distal extremities have a more favorable prognosis than those in the trunk and proximal portions of the limbs.''

Gerson therapy won't help anyone and is pure quackery. In her case it seems that having her arm amputated would have been the best way to increase her long term survival

@SelenaWolf #17
About this :

Do they have the right to influence others to do so? Absolutely not.

Hum, if their messages aren't overtly commercial, methinks they have the "right" (freedom of expression and all that)
However, do we have the right to severely criticize these messages ? Hell yeah !

Good point. I stand corrected.

Vicki at #78:

VERY true. The misery that these quakeries cause is a factor not considered enough in my opinion. The focus is usually on the 'not getting real medical attention' part. Orac mentions them in passing and they often come up as a very brief rejoinder in some discussions but I think they should be the real focus much more often.

Just think how miserable she must have been day after day after day. Eating such a massively proscribed diet and then the enemas... I cannot even begin to imagine how horrible that must have been.

Chemotherapy genuinely scares me. I pray to my own deity - dangerous thing to say in skeptical circles I know! - that I never need it. Nausea and vertigo are something i have hated, dreaded since I was a child. I cannot imagine repeated rounds of chemo and the terrible side effects lasting for months at a time. BUT. If you are in that condition then at least you can console yourself it is all towards a purpose and you are measurably improving your chances to keep on living.

In contrast, flogging yourself with YEARS of disgusting, bitter vegetable juices at every meal and inserting a rubber hose... No. The two don't compare.

'Wellness Warrior' could have done so much more, genuine, positive good for both herself and others by perhaps working with an actual medical charity. Or even using her obvious social and business acumen to raise awareness of cancer and its treatment. Instead she did... nothing. Nothing that helped anyone, except perhaps her ego in a transitory way There is another tragedy of her case.

Apologies - that should have been Vicki at #73!!!

I REALLY wish this comment had a proper threaded and hierarchical replying system. I cannot even find a help page for 'scienceblogs.com' that describes how to do italics and quote earlier posts. Am I missing something?

The overall contribution of curative and adjuvant cytotoxic chemotherapy to 5-year survival in adults was estimated to be 2.3% in Australia and 2.1% in the USA.
CONCLUSION:
As the 5-year relative survival rate for cancer in Australia is now over 60%, it is clear that cytotoxic chemotherapy only makes a minor contribution to cancer survival. To justify the continued funding and availability of drugs used in cytotoxic chemotherapy, a rigorous evaluation of the cost-effectiveness and impact on quality of life is urgently required.

Comment in
Clin Oncol (R Coll Radiol). 2005 Jun;17(4):294.
PMID:
15630849
[PubMed - indexed for MEDLINE]

That hoary old anti-chemotherapy trope? Dude, did you really think I hadn't addressed that before?

http://scienceblogs.com/insolence/2011/09/16/two-percent-gambit-chemoth…
http://scienceblogs.com/insolence/2011/12/07/so-chemotherapy-does-work-…

Pathetic. Try again.

I cannot even find a help page for ‘scienceblogs.com’ that describes how to do italics and quote earlier posts. Am I missing something?

Welcome to the internet. You have to use basic HTML tags.

Gemman Aster:

Italics are done by <i>italics</i>, which produces italics.

Quoting is done by <blockquote>quoted</blockquote>, which produces

quoted

.
So just standard HTML. You have to manually copy the text you want to quote.

How come so many of the recent influx of posters have many relatives and friends who have died using conventional medicine? I don't know a single person, personally, with cancer. Yet these people are surrounded by it, everywhere they look people are dropping like flies from chemotherapy. Except all their other acquaintances who appear to live a life skipping through the flowers whilst supping sprout smoothies.

I wonder if alt med enthusiasts are actually disease vectors of some kind?

Everybody I know who has died has died while using conventional medicine. But that's becuase when you're dying you're probably gonna try and do something about it, and that won't always be successful. (MInd you, two of them died in hospice care; the conventional medicine they were using was limited to painkillers to ease the process.) I think that's a pretty common circumstance, so I think it's perhaps unsurprising that sometimes people will become angry with the medicine for failing to save their loved ones. Grief distorts your thinking, and for people unlucky enough to live in a cancer-plagued family, it may become very difficult to be rational about it. Ripe prey for quacks.

A paternal aunt of mine died of a very aggressive breast cancer in her early 20s despite conventional treatment that may actually have tried a little too hard. (Her case is part of why that side of the family is big on right-to-die causes.) My godmother (who is related on the same side of the family), however, survived lumpectomy and chemo and has been cancer free for I think at least five years now. I have lost both of my grandparents, but one of them was complications from a fractured pelvis, and the other was . . . unknown, but he was convinced it was pancreatic cancer. He was a general surgeon, and at 91, felt that getting a biopsy would've been purely academic and ultimately a waste of time; he decided to go into hospice and medicate with only liquid morphine, high balls, and Dos Equis. I wanna go out like him. :-D Though maybe with more wine.

Well, if it happens to me, I hope I can face it with as much dignity as it sounds like your grandfather showed.

These therapists won't learn... A naturopath oriental medicine practitioner in Michigan: http://youtu.be/mECKqFZV3dg?t=7m8s

The Guardian had a great piece on alternative therapists and cancer:
What do doctors say to 'alternative therapists' when a patient dies? Nothing. We never talk
http://www.theguardian.com/commentisfree/2015/mar/03/what-do-doctors-sa…

"Orac, I think the reason you’ve been inundated with comments from defenders of Jess is the fact that because her “team” so swiftly and thoroughly removed her blog/FB/Twitter/Pinterest from the net, when her name is Googled, your post comes up high /or first in results."

This brings up a question: for those people who joined in on the last comments section to blast Orac, why aren't they blasting the people who rushed in to scrub Jess' various website entries of information that, according to them, is lifesaving. Their actions suggest they thought that info was an embarrassment rather than helpful.

A practicing medical oncologist gives her take on dealing with "alt-med" beliefs and advocates:
http://www.theguardian.com/commentisfree/2015/mar/03/what-do-doctors-sa…

Gemman Aster @89

When the message start coming in thick and fast, I wish everyone (including Orac) would put the number of the message they are replying to somewhere in their post. When there are only 30 posts, it's not a big deal, but when it gets above 100, it's a little difficult to keep track of what's being replied to. Unlike Gemman Aster, though, threaded messages, phooey! :)

The problem with that is that there are a lot of newbies whose comments have to be approved, which changes the numbering every time I go in and moderate comments. (First time commenters go to automatic moderation.)

Rats! Oh, well, that's what happens when you are the first listing on a Google search. And the second.

Orac's reply addressing Jacqueline van 't Hull's comment succinctly covers my feelings about the way alt med people often use papers. It is often clear they have not read them, and they treat the existence of a paper they agree with like a magic bullet. There is no awareness of the differing quality of papers. If a paper they agree with can be found, it will be used. It does not matter if the paper has been thoroughly trashed, it will forever be passed around to the gullible who will eat it up.

With all these youtube videos showing quacks peddling their nonsense, I sometimes want to make a video of my own that says, "You know that youtube video you just watched? Yeah, it's all bullshit."

And that is all.

@103 Travis

Papers are talisman. You hold them up and they radiate magic to stun close minded skeptics. Much like the use of the cross on vampires.

One doesn't need to hold up physical copies of papers on the web as the links channel the same magic, via quantum mechanics, over the internet.

As a converted "follower" of Jess' I thank you for writing your articles Orac. Despite what it appears, I think at least some of us are seeing through the smoke and mirrors.

@ Michelle #1
" I have to say I know little about the medical community or the alternative health community, however I do feel that your posts on Jessica seem cruel and unnecessary."

So...speaking from admitted ignorance of both camps, you still feel the need to render an uninformed opinion? These posts are extraordinarily necessary, to hopefully educate the fence sitters on the very real dangers of following whimsy. This is a young woman who could be very much alive and productive today, if she'd undergone the albeit horrible and disfiguring surgery that would have given her that chance. I have no idea how popular she was or how many people her website influenced to follow her misguided and naive path, but even one is too many.

Orac comments on real cases often, and he always bends over backwards to be respectful, and give them dignity in their often awful deaths. Some have criticized the timing of the post, instead of waiting a "respectful" week or two. But really, to that community there would never be a correct time to make that post. We live in a 24/7 news cycle in an online world....this isn't cruel, it's just how things are now. There'll be more sad and crazy to talk about tomorrow.

@ Orac.
Congratulations on the comment count on the previous post ! (well over 800 as I write) I thought it was both very necessary, in contrast to Michelle, and also tastfully and respectfully done, with almost no insolence at all.

Clearly it has hit a raw nerve in the Altie community, and attests to how widely read and influential your blog, and the other skeptic blogs, have now become.

Alice #106. Wonderful. And thank you for having the decency to say so.

Alternative therapies, to my mind, are just like a "magic box" I received for my 8th birthday. The directions said to keep the box tightly closed for 30 days - no peeking! - and if you succeeded, then you would open the box to find a treasure. Of course no 8-year-old can resist peeking, so no treasure. And if by some miracle you do make it 30 days, the "treasure" that you get is self-discipline. Not exactly the treasure I felt I was promised, but one that lecturing adults would say was what I truly should aspire to (instead of cookies or cash, which of course is what I did want). They conveniently ignored the fact that if a person has self-control, the box did not give it to them - in fact, if you didn't peek, you clearly had self-control already inside you.

And so it is with alternative therapies - if you don't do it absolutely perfectly, then no reward for you, and it's your own fault for peeking. Nobody can prove the box isn't magic, because nobody can meet the impossible standard that has been set (5 enemas a day for months or years - one cringes to even imagine it).

And if you do manage to meet the impossible standard of 5 enemas a day, every day, for months or years, then your reward is not the treasured cure you hoped for, but things like "choice", "strength", "happiness", "pure living", "connection", or other ideals that are great, but are not actually caused by the treatments. The "magic" box is just a box, and an empty one at that.

I told my spouse about the box, and he said, "That's a really cruel gift." It sure is, no matter what form it comes in.

Belle Tozer I feel the need to point out the glaringly obvious however totally overlooked fact since the tragic death of Jess Ainscough hit the media. People who choose conventional western medicine as oppose to alternative or natural treatment to treat their cancer also meet the same untimely death as Jess. Western medicine does not have all the answers and neither does natural treatment, how a person chooses to treat their cancer is their own right. Why do we feel the need as a society to try and prove our opinions right and the opinions of others wrong, no two people are alike, no two bodies are alike and what works for one may or may not work for another. Those in favor for the western approach to treat cancer are having a field day with the death of Jess Ainscough and are using her as an example to manipulate people into thinking their way is the right way, which ironically is the very same thing Jess Ainscough was accused of doing for the alternative community. No one will ever know if Jess taking the more traditional western route to treat her cancer would have saved her. The western approach could give her no guarantee in this however in her death they have slammed her choices and hung her out to dry. The medical industry uses people like Jess Ainscough to scare people who dare think they know their bodies better, who dare to choose a more a more natural approach. Jess Ainscough may not have been able to save her own life with natural therapies however many others will and many others will dies just as with the western approach. We don't have all the answers, people have the right to choose what feels right for them at the time regardless of the treatment. Who are we as a society and what does it say about us when we are damming someones choice only days after their death. The world needs more love, not less.

Hi,
Ever since I heard about Jess Ainscoughs death, I've been interested to see the response from both sides. Indeed, there seems to be so many scientists/doctors out there very readily jumping on her story and slamming the 'alternative medicine / wellness' movement. I haven't seen too much of a response yet from the alternative health community, and I suppose that will come with time.

I like to think I'm from both worlds if that is allowed on here. I do not have cancer or have had in the past so I cannot comment there. However, I will see the doctor if I'm sick enough, I vaccinate my kids (though I do hold a fear of the side effects they can have). I leaned on fetal medicine to help me with my second pregnancy. I also see an acupuncturist once a month, and a chiropractor. I'm a huge believer in 'you are what you eat' and that it does effect your overall health. I believe in organic foods, I simply don't like the idea of mass chemicals in producing food. I avoid processed foods and sugar, for the simple fact that I feel better. Oh, and I love yoga and dabble in meditation.

Never in my life have I believed you can fully control your health. There are straight out things you just can't control. But, I believe there is more to health and wellness than western medicine gives us. And it's not all quackery to me, though some is, and some I don't agree with. For example reading through, just last night, a day in the life of gerson therapy does not sound like it can cure cancer (with my base level knowledge). And you would have a hard time selling that to me.

But, I find it insulting that 'alternative medicine' it is all brushed aside here as a collective whole. I'm not a stupid person, I'm educated and hold a degree in health science.

So my end point is, I really think there is room for both, and I acknowledge this comes from someone who does not have a serious illness to manage.

Hey Bel:

"I think people should heal themselves through any means they choose without having to be condemned by anyone. There are many doctors or quacks that are good and bad regardless of mainstream or unconventional methods of medicine. I don’t think it was a wise decision to burn witches at the stake do you?"

No one is disputing free choice here - at all. It's been said over and over what a tragedy it is that Jess has lost her life, and no one is gloating. What you're overlooking is that we all understand and agree that we have the right to make our own choices. It's that simple. Drown if you feel it best, but don't drag anyone else with you on your way.

#111

This statement

"I vaccinate my kids (though I do hold a fear of the side effects they can have)"

and this statement

"I believe in organic foods, I simply don’t like the idea of mass chemicals in producing food."

put the lie to this statement

"I’m not a stupid person, I’m educated and hold a degree in health science."

This is the best comment section I've ever seen in my life.

I don't think the alties will learn anything. Why should they, they're making too much money selling quackery to desperate people to ever stop.

My brother, a follower of Aincough, is dying of cancer at the moment and is wasting huge amounts of time and money at the Gawler clinic in Australia. If you haven't heard of it the main thing you need to know is that they tell their marks, er patients, that any negative thoughts towards the treatment will prevent them from healing, and that they need to cut out anyone who questions the treatments as a 'negative influence' who can make them sicker.

It might be true, every time I think about Gawler I get negative and it makes me sick to the stomach.

Belle, you seem to be labouring under the misapprehension that medicine is an opinion. I'm afraid it isn't. The whole point of modern medicine is that it can be proved to work. Sometimes to a greater or lesser extent, depending upon what it is up against. It can be shown to work in cold, hard, facts, figures and percentages. You might as well claim that 'water is wet' is a matter of opinion. When you can show those same cold, hard facts and figures for a 'natural' remedy it won't be alt med any more.....it'll be med.

I believe in organic foods, I simply don’t like the idea of mass chemicals in producing food.

Buying organic food is not going to guarantee that large amounts of chemicals weren't used in it's production; the only difference is whether they're "natural" or "synthetic." This of itself says nothing whatever about human or environmental toxicity.

Narad, yes I am aware that certified organic and biodynamic does not mean free from all chemicals. I buy from local producers and buy Australian grown where I can, preferring that option even if it's not organic (and that was before the berries...) because international standards differ for organic foods. It's picking the best food option I know how.
Organic and biodynamic food is also about soil quality. I grew up on a vineyard and a huge agricultural area. The increase in chemical use has been remarkable over the years. And my grandmother tells stories of how 'in her day' the soil used to be teeming with life - like worms, birds around the place etc, particularly after tractor work and discing. Now there's not a great deal of anything in the soil. It's dead, chemical ridden and overworked. You don't have to be Einstein to work out that there wouldn't be many minerals in that soil. Production of organic food isn't perfect yet, but I believe it's still a better option.

Those in favor for the western approach to treat cancer are having a field day with the death of Jess Ainscough

In what way is Gerson not "Western"?

@ Narad #116
'Western' is just a way to say supported by scientific evidence.

@ Kate #111
And why would one see an acupuncturist and a chiropractor once a month?
If someone sees the family doctor once a month, I would suppose they have pretty serious health problems. To me visiting an acupuncturist and a chiropractor once a month is just a way of trowing away money. Or do you think they have some magical effect on your health?

I only see a doctor if I have a health issue and I don't know how long ago I saw my family doctor for the last time. And no, I'm not suffering from memory loss.
I don't eat organic food, don't visit any 'alternative healthcare people', don't swallow suplements or vitamins and I feel as fit as a fiddle.

Please try and remember that people die in the hands of Doctors and alternative practitioners. Both have their place and can help people in different situations, who are we to judge? God gave us free will to make our own decisions. and Jess made hers.
Please consider the friends and family of Jess, respect her decision and show some compassion.
God Bless you and your family.

You don’t have to be Einstein to work out that there wouldn’t be many minerals in that soil.

If by "minerals" you mean "rocks" or "pebbles" or "clay", these are things that many farmers prefer to do without.

Jess was doing well, I know all the medical statistics say that at a certain period the cancer will progress but maybe just maybe to all the people who do not believe in "Holistic Health" when her mother died part of her heart did and her body was not strong enough to handle the sadness!! Many people die after loosing a loved one, that is a fact!!! She promoted Whole health and sadly my personal opinion is that when her mum died part of her started too. She was an amazing girl. X

Don't ever regret your post. I SUPPORT YOU!!!! It IS very necessary that people wake up. Stop being brainwashed. Whatever method you take should be a well thought out and educated decision for yourself, whether it is conventional or alternative. The problem lies in Jess's message when she claimed to have 'healed' herself and was spreading the message like the gospel. Although in the beginning, I am sure she believed that, but around 2011/2012 when the lesions were clearly showing through and the arm was swelling up and she had to continuously cover it up, I am sure she knew that the cancer was progressing. The sad part of it is, she kept spreading the word. She should have been honest with her wellness warriors and explained that she saw an issue, but wanted to still press forward. Its okay to admit that something is not working out as you expect. She went above and beyond to cover up that arm which was getting worse and worse. Her loyal followers even asked her out of SHEER CONCERN. She gave ridiculous excuses like Lymphedema and stress. Why not be honest and clean about it, admit to human nature. Because in the end the Gerson's last comment said it all. They basically said, she had not been on the therapy for 3 years...so they tried to blame her for her own demise, instead of pointing the finger at themselves and saying maybe their horrible treatments don't work. Charlotte Gerson is arrogant. I have seen her in action. She claims to be the pillar of health all while taking people's money. DOn't get me wrong, people should take care of themselves and eat better, but that does not mean they should overlook conventional treatment as well. I believe people should do what is best for them. This is not a Jessica attack at all, because honestly we would all love to believe that following the Gerson therapy is truly a cure, but we can clearly see it is not. YOU SHOULD NEVER REGRET YOUR POSTS, because it has changed my thinking and how myself and my loved one can move forward and not believe in the quackery. Sadly Jess paid her life believing that crap. She saw the writings on the wall...The even sadder part is the coverup she did, personally so that she wouldn't destroy her image or the business. I wish her fiancé would come forward and speak about what actually happened in those last days, so her legions can understand the truth. I don't like how they have taken down the whole site and videos as if she simply disappeared. Most people still reference articles and videos to understand or maybe it could help someone. So that why I call her entire death a COVER UP!!!! Truly.

But, I find it insulting that ‘alternative medicine’ it is all brushed aside here as a collective whole. I’m not a stupid person, I’m educated and hold a degree in health science.

The problem seems to be that you're including a lot of things in "alternative medicine" that don't belong there. For instance:

Oh, and I love yoga and dabble in meditation.

I like yoga, too. I find it nice how a vigorous vinyasa-style class, for instance, basically manages to combine cardiovascular exercise, strength building, and stretching. And it's more interesting than a treadmill. I mean, yoga can be more or less "spiritual" in the way it's presented, but that doesn't make it "alternative medicine." It's exercise, pure and simple.

Same for meditation, unless somebody is making wild claims that some sort of visualization exercise will cure cancer. I personally have much more than dabbled in meditation - zazen/shikantaza specifically - but for me it is a religious practice, nothing to do with "medicine." I think it might help with my mental health a bit, in that I seem to be more likely to slide into depression when I'm not sitting on a regular basis, but in any case, I don't do it for any health benefits.

Narad, yes I am aware that certified organic and biodynamic does not mean free from all chemicals. I buy from local producers and buy Australian grown where I can, preferring that option even if it’s not organic (and that was before the berries…) because international standards differ for organic foods.

If you take a look at biodynamic farming, I think you might be surprised at just how bizarre it is. I personally refuse to throw my money at something so silly.

I used to try to buy organic produce as well, because I thought it was "better," because that just seems to be a very strong assumption within a certain culture that I was/am a part of. Then I found out that it's no healthier and not necessarily more ecologically friendly, and I stopped wasting my money on it.

I do like to buy local produce from small farms when I can. I figure the less shipping of food from point A to point B, the better, and I like supporting small farms, whether they're certified organic or not. I figure they probably have better practices in regards to actual farming problems like monocultures, too.

But again, that has nothing to do with "alternative medicine." I don't even do it expecting any special health benefits.

So I'm wondering - what kinds of actual alternative medicine do you believe in? When it comes to acupuncture, Gerson therapy (ugh), Burzynski's cancer quackery, etc. ad nauseum, there's just no evidence that they have any efficacy as "medicine" at all. Relying on them to treat actual illness can actually kill people, though.

Belle Tozer I feel the need to point out the glaringly obvious however totally overlooked fact since the tragic death of Jess Ainscough hit the media. People who choose conventional western medicine as oppose to alternative or natural treatment to treat their cancer also meet the same untimely death as Jess

Nobody denies that, least of all practitioners of conventional western medicine. They keep detailed records of it, in fact. And publish them widely. That's why they're right there on the internet for anyone to see.

The reason you don't see that comparison being made here is not that it's being overlooked. It's that the detailed record-keeping I just mentioned makes a better one possible. And by "a better one," I mean "the one that indicates, specifically, what particular kind of treatment is likeliest to succeed for what particular kind of cancer in what particular circumstances."

So there's actually no need to waste precious time on questions that are as broad and uninformative as "How does the outcome of Jess Ainscough's treatment compare to that of all people in the world who have been conventionally treated for cancer?" You can just go directly to "How does the outcome of Jess Ainscough's treatment compare to that of all people in her age range who were conventionally treated for the same kind of cancer under the same circumstances?"

And the answer to that question is: "Not well."

It's not even a close comparison. She would have been twice as likely to survive ten years or more with conventional treatment than without it.

(Obviously, if you make the question "Was dying terribly at a young age a better option for Jess Ainscough than having a limb amputated and living longer would have been?" nobody but Jess Ainscough could possibly be in a position to answer it. So I'm not pretending to be.)

Western medicine does not have all the answers and neither does natural treatment,

If "all the answers" means "a certain cure for all ills," that's true. But since western medicine demonstrably has some answers (detailed record-keeping!) and natural treatment has none, again: That's not an apt comparison.

how a person chooses to treat their cancer is their own right.

True.

Why do we feel the need as a society to try and prove our opinions right and the opinions of others wrong,

Speaking for myself, I don't feel that need as either a society or an individual.

I do feel a need to prevent vulnerable people who are desperately ill from investing their time, money, energy and hope in pursuing ostensible remedies that are supported by absolutely nothing other than the baseless opinion of those who profit from their promotion, though.

If possible.

no two people are alike, no two bodies are alike and what works for one may or may not work for another. Those in favor for the western approach to treat cancer are having a field day with the death of Jess Ainscough and are using her as an example to manipulate people into thinking their way is the right way, which ironically is the very same thing Jess Ainscough was accused of doing for the alternative community.

No. Those in favor of the western approach are, by definition, in favor of giving everybody access to the best available factual information about which treatments do or don't work. And how. And why. And for whom. And when. And so on.

Jess Ainscough is accused of misleading people by repeatedly claiming to have been healed when she wasn't.

She was very young, and in tragic, dire circumstances. So it's impossible not to feel sympathy and sorrow for her. And it's all too understandable why she chose to embrace a false hope.

Others are free to do likewise, if they wish. They're just not free to make false claims about it.

Because, you know. It's a matter of life and death. There's a lot at stake.

No one will ever know if Jess taking the more traditional western route to treat her cancer would have saved her. The western approach could give her no guarantee in this however in her death they have slammed her choices and hung her out to dry. The medical industry uses people like Jess Ainscough to scare people who dare think they know their bodies better, who dare to choose a more a more natural approach. Jess Ainscough may not have been able to save her own life with natural therapies however many others will and many others will dies just as with the western approach. We don’t have all the answers, people have the right to choose what feels right for them at the time regardless of the treatment. Who are we as a society and what does it say about us when we are damming someones choice only days after their death. The world needs more love, not less.

It also needs more truth, not less. Apart from that, please see above.

Belle said:

Belle Tozer I feel the need to point out the glaringly obvious however totally overlooked fact since the tragic death of Jess Ainscough hit the media. People who choose conventional western medicine as oppose to alternative or natural treatment to treat their cancer also meet the same untimely death as Jess. Western medicine does not have all the answers and neither does natural treatment, how a person chooses to treat their cancer is their own right.

Belle, did you even glance at the previous thread on this topic? The one with over 900 comments? This has, in no way, been overlooked. Your sentiment was brought up over, and over, and over again, and addressed, over, and over, and over again.

I know all the medical statistics say that at a certain period the cancer will progress but maybe just maybe to all the people who do not believe in “Holistic Health” when her mother died part of her heart did and her body was not strong enough to handle the sadness!!

But her mother died of a treatable cancer because she opted for "Holistic Health" over effective treatment.

So all that would prove is that Gerson therapy is lethally dangerous to people with cancer in more ways than one.

Alice at #106:

That is very rewarding to read. I barely comment myself, but I am certain the regulars here - not to mention Orac himself! - will be glad to know the SBM message does resonate with some readers who initially do not share it.

In your case at least it seems the answer to Orac's question in the title is - Yes!

I read the OP the other day, and was concerned that Orac might be drawing too much of a strict dichotomy where there are actually gray areas. I thought it was a bit of stretch, for example, to take Schoenfeld to task for calling for patients to be guided by "a licensed medical professional" on the basis that various quacks have licenses. First, Schoenfeld contextualizes the reference to "licensed medical professional" by references to conventional medicine and surgery before an after, so it's pretty clear she wasn't trying to weasel there. Second, lots of "natural foods" enthusiasts seem to believe they need no more of authority that Vani Hari or Mike Adams to guide them, so regardless of the alternative, Schoenfeld's undermining the Internet gurus. Third, in doing this she's admitting patients need a competency she does not have, which is a pretty harsh message in alt-land.

I've known folks who do various fad diets, including the paleo diet now. I would describe them as not scientificially oriented but not all that woo-ey, if at all. That is, I can't imagine any of these dieters would resort to Gerson's for cancer, (unless possibly their diagnosis was as dire as Ainscough's). As such I think there's quite a difference between "alternative health" and "alternative medicine". Which is not to endorse "alternative health" measures like the paleo diet — just keep it in perspective.

The way I see "alternative health" and practiced and understood by people I run into is —'eating this and not that; taking this and not that, doing this and not that will keep you healthier and reduce your chances of getting sick, but you still will get sick from time to time, and then you should see a doctor.' Whereas "alternative medicine" pretends to be cure, not prevention. I mean, people don't start on Gerson's when they're healthy to avoid cancer, right? If it's so hot, shouldn't we all be getting coffee enemas as preventatives?

Thus, while "alternative medicine" DOES hold to the idea that we have complete control over our health and physical well being, "alternative health" seems only posit a limited influence. It is, well, an 'alternative' set of prescriptions for better health, offering similar promises to conventional prescriptions. Eat paleo and you'll feel less sluggish / eat a balanced diet and you'll feel less sluggish. Etc. Do the right things and you'll have FEWER health problems, not NONE.

Schoenfeld's call IMHO, is not to Alt-Med, but to this much more limited practice of Alt-Health. And it's logical conclusion, whether she meant to imply it or not, is 'Alt-Health shouldn't be touching Alt-Med with a ten foot pole! Those people are crazy-ass murderers we're NOT!' The problem 'Alt-Health' would seem to have is that Internet businesses like NN are devoted to maximizing sales of 'natural' anything for any purpose whatsovever, and thus spread both the 'Alt-Health' and 'Alt-Med' creeds conflating them.

Perhaps skeptics should assist the truly limited Alt-Health folks by helping them undo this conflation, and establishing different categories of skeptical appropriation for the two, instead of lumping them together? Maybe this would help prevent Alt-Health consumers from sliding over into the clutches of Alt-Med/ (?)

The first business that pops to my mind as being in the Alt-Health realm is GNC, which now has a co-marketing deal with CVS where there is a "GNC section" in every CVS pharmacy. Which leads me to ask (as I don't know), 'What's the skeptic/sbm take on GNC?'.

It is always nice to hear from people like Alice in #106. I often run into people that don't understand why anyone speaks out about these things, because they don't think anyone is going to change their mind. That might be true for a lot of people, but some people will start questioning, and do end up changing their views.

Why do we feel the need as a society to try and prove our opinions right and the opinions of others wrong,

I wonder, did you ever ask Jess this question? Because she spent a lot of time telling as many people as she could that the Gerson approach worked and "western medicine" didn't.

So did you ever call her out on it? Or is that only reserved for those criticizing her for doing it?

My wife just handed me a copy of Women's Health newsletter from Harvard which published an article about unnnecessary
radiation for breast cancer in women over 70. Obviously there is something wrong here. I could't access this but here's another article.
www.medicalnewstoday.com/articles/286539.php
I will not slavishly follow Western medicine.

Another article-
www.uphs.upenn.edu/news/News_Releases/2014/12/bekelman/

www.uphs.upenn.edu/news/News_Releases/2014/12/bekelman/
Said Emanuel: “The current payment structure is the biggest hurdle—there is no financial incentive to recommend shorter duration treatment. We need to properly align payment with health care quality ......"

Ken - if you'd bothered to have searched, you'd have found that Orac has previously discussed studies that say that screening mammograms happen too often and may produce more harm than good in some cases. So if you don't think your wife should get annual screening mammograms, science may agree.

This has nothing to do with mammograms. Of course she gets them. This is about treatment. You obviously did not read the article.

Ken - you are correct, I scanned your comment and misread it. My fault, and I apologize.

Its interesting, how you bash Jess for her choice in treating her cancer. She lived much longer than most people diagnosed with her type of cancer. According to the research on http://www.ncbi.nlm.nih.gov/pubmed/12181660 This type of cancer does not respond to chemo or radiation. And most people die within 31 months and if it does go into remission in 50%, it comes back. I would say her choice was a good one for her and it prolonged her life. It’s easy to bash alternatives without actually looking at statistics of the cancer itself and not investigating by talking to people and their experiences. Of course, not all therapies are going to work the same for all people and this includes Western medicine. It boils down to choice. If you choose Western medicine, then by all means do it.
Abstract
Epithelioid sarcoma is a rare histologic subtype of sarcoma. The clinical behavior and prognostic factors influencing survival in this disease are examined. A review of clinicopathologic features of patients with epithelioid sarcoma prospectively followed between September 1981 and April 2001 at the Cancer Institute Hospital was performed. Eight patients (4 men and 4 women) constituted the subjects of this study, with a mean age of 41 years. Tumors presented in the lower extremity in 62.5% of patients and in the upper extremity in 37.5%. All patients were followed for at least 10 years from the time of diagnosis or until death. The follow-up ranged from 17 to 228 months, with a mean of 78 months. At least one local recurrence was seen in 50% of patients. During the course of the disease, metastases to regional lymph nodes developed in 50% of patients and metastases to the lungs in 62.5%. The median survival was 31 months, with a 25% 5-year and 10-year survival rate. Pulmonary metastases were correlated with decreased survival. A delay in diagnosis of epithelioid sarcoma is common. Epithelioid sarcoma differs from other sarcoma subtypes in its propensity for nodal spread and local recurrence. Chemotherapy and radiotherapy have an insignificant effect on the course of epithelioid sarcoma. Careful follow-up, evaluating local recurrence, nodal spread, and pulmonary metastases, is warranted. The long-term outcome of epithelioid sarcoma is dismal.

Actually, if you paid attention, linked to posts with more comprehensive references, including an analysis of SEER data. Your reference is over 12 years old.

My point- do the research. Obviously following the Gerson Diet is not the way to go. But some people give up and don't want anymore chemo. I've seen it in my relatives who followed the
chemo protocol (MD Anderson) for 5 years faithfully believing it would work and they would live. Horrible side effects. Died anyway.

My wife just handed me a copy of Women’s Health newsletter from Harvard which published an article about unnnecessary
radiation for breast cancer in women over 70. Obviously there is something wrong here.

Interesting. Who do you think it is that is assessing the use of radiation in women over 70, and concluding that it is unnecessary.

It certainly isn't the "alternative" providers. Amazingly, this is based on studies using that evil "Western medicine"....

I will not slavishly follow Western medicine.

...which you don't follow.

#140 You really jump to conclusions. Polish your critical thinking skills please. Thank God or the universe or whatever for Western Medicine!

#140 slavishly is the operative word here.

And yes she followed the Gerson Diet slavishly. Poor, beautiful soul.

#140 slavishly is the operative word here.

As opposed to "selectively" I guess, then? As in, you follow "Western Medicine" when it says what you want it to say, but not when it doesn't?

That's not following, that's doing whatever you want.

#146 Do you have cognitive problems? Exactly what are you talking about? I was prescribed Leviquin for a sinus infection years ago when it came out on the market. Did the research- found out the side effects and didn't take it. Years later levaquin came under fire. The sinus infection resolved on it's own.
What is exactly wrong with this.

And another time I had a sinus problem and was prescribed
(by another doctor) -amoxicillin -which works just fine.
(But can't be used by people who are allergic to penicillin)

ken, nothing is wrong with rejecting medicine for a sinus infection. Low risk compared with cancer. Sinus infections are rarely fatal. Cancer is often fatal.

#149 Obviously- you missed the point. I feel I have the right to seek out different oncologists as to a treatment plan- this will not include alties.

'her doctors tried isolated limb perfusion with chemotherapy in an attempt to avoid an amputation of her left arm at the shoulder, her tumor recurred, after which she chose not to undergo amputation and instead to embrace the quackery known as Gerson therapy, which she did for over two years.'

So you're saying that she tried chemo and perfusion, which didn't work, her tumor came back, in a swift manor I presume. She did not want her limb amputated, so she chose an alternative AFTER having tried some 'conventional' treatments. I'm no advocate for Gerson. Lord knows I would never try it. But she chose not to have her arm amputated... and since she made that choice, she probably thought she would need some lifestyle changes to support her and give her a chance. So she chose Gerson, and it seemed to be working for her. It seems her case was aggressive tumor to begin with. So given the information that I've managed to gather, she made a pretty good run at the life she had.

You cannot slander somebody for making the choice not to get her arm amputated. Yes I've read all the comments about Gerson being woo... But even if she had chosen to just eat a smart vegan diet or something, and written a cookbook and marketed that... you would probably still come after her.

The fact is that she did try some conventional therapy, it wasn't the choice that you thought she should have made (amputating her arm), but its her body so you have no say in that matter. You can pick apart her words and criticize them, sure. But you can't say she made a bad decision when it wasn't yours to make.

I do agree that her marketing of Gerson was a too strong too soon. But I don't think that her choice of not undergoing amputation and following an alternative modality warrants the amount of criticism its getting. She didn't die the very next day of a carrot juice overdose. She lived well into her life expectancy without having the arm amputated.

I do agree though that the alternative treatment sector is getting out of hand. People going to naturopaths and nutritionalists instead of doctors. I do think that there is some validity to the industry, as doctors don't often address lifestyle in detail with patients. And I Feel like its here to stay. So I think that doctors need to educate themselves more about the 'alternative' practices out there and spend more time with their patients talking about implementing their choices. Somehow it needs to be married with conventional medicine because this mass exodus from the conventional is a little bit scary... especially when people are trusting under-qualified 'specialists' with online certification, as their primary care for serious illness.

Ainscough did more than just try Gerson. She promoted it. She made videos saying how great Gerson therapy was and how fantastic coffee enemas were. She sold herself as a Gerson success story. She built a brand around herself, Gerson therapy, and a raw vegan diet.

If it were just her, I would have had less of a problem. Competent adults can choose any quackery they desire. It's when they start promoting it to others that I start to get testy.

Also, the isolated limb perfusion was suggested to her as a last ditch alternative to avoid amputation, the idea clearly being that amputation would be a fallback if it didn't work. (That's why surgeons do isolated limb perfusion: To try to avoid amputation. If the tumor recurs in the limb after isolated limb perfusion, then amputation is put back on the table as a salvage operation to try to save the patient's life given that the limb can't be salvaged.) It didn't work, and Ainscough rejected the fallback.

Interesting article here:

http://www.sunshinecoastdaily.com.au/news/family-pays-tribute-to-jessic…

"Jess elected to devote herself to unconventional treatments which included Gerson Therapy for two years.

While this did appear to help Jess immensely, after the devastation of losing her mother Sharyn to breast cancer in 2013, Jess' cancer resurfaced once again and was confirmed in 2014. "

It concerns me greatly it cannot be admitted that her cancer never went away and still in death they want to keep up the farce that it "went away" and only "resurfaced once again" when her mother passed away.

It sickens me, that you can tell a lie, paint it green and make a fortune off it. I do not wish death upon anyone, I had hoped as once being a follower of hers she really would live, I hoped what she was doing would work for her sake and her fans sake but it saddens me that she took everyone along for the ride and people will still be blinded to the truth.

"The medical industry uses people like Jess Ainscough to scare people who dare think they know their bodies better"

"Know their bodies." One of the reasons these threads have been so fascinating is for the glimpses of the many peculiar notions alt-med proponents hold. On the other thread we talked about how the "boosting the immune system" became an unthinking mantra, not just in cancer but in "holistic health" circles in general. Some people seem to think everything that could possibly go wrong with the human body is about the immune system, and conversely, if you just "boost the immune system," nothing can get ya.

"Know your body" is another alt med trope. Alt-medders wax indignant that a doctor would dare to "know their body" better than they know it themselves. I suppose it's a mystical thing. I mean, why do you go to a doctor if you already "know your body" and it magically tells you "what it needs"? (Ainscough used that rhetoric regularly, noting that she was getting better and better at learning "what my body needs.")

We do generally go to doctors to find out things about our bodies that we DON'T know. This is why doctors run tests etc. If all we needed to do was "know our bodies," and then we could heal ourselves of virtually everything, we'd have no need of doctors. I guess that's what some of these folks do believe.

But yeah, they mean it in a spiritual sense. Jess spoke regularly of "listening to her body" and intuiting "what it needed" and "what it was trying to tell me" (or "what the cancer was trying to tell me"). It was meant in a religious sense.

I kept wanting to say, "What the cancer wants to 'tell' you? It wants to tell you, 'Ha, sucker, die.' That's really all it's got to say."

I understand what you are saying about the Gerson therapy, Orac. But the choice to pursue quackery for anyone is their choice, especially after having tried medical options, and having first hand experience with how it felt to your body and soul to undergo those procedures. Even though Jess sold it, you aren't just going after her and Gerson, you're casting a wide net here. Had your argument been focused more on the Gerson therapy or your terminology referenced more particular treatments, I'd be totally with you. But the terminology you use... such as 'alternative medicine', and your apparent wide implications, I feel unfairly include people and beliefs that you have no right to target.

The thing I don't understand is how rejecting the option of limb amputation (even after perfusion) can be a point of discussion for anyone, but Jess herself. She experienced the entire process subjectively. Not us... and she chose an alternative modality. That part shouldn't be up for judgement. I get why you disprove of her selling Gerson. But her life choices shouldn't be up for debate, especially since she fell within life expectancy, and you don't have her medical reports to know the particulars of her case.

Eddy,

The thing I don't understand is how you can be arguing with things you haven't actually read. I'm not the only person here who has said that we sympathize with Ainscough's choice not to have her arm amputated—and might have made the same choice ourselves, in her situation—but that this doesn't justify the Gerson protocol. She could have done neither, and enjoyed those remaining few years, rather than spending two years housebound from the Gerson "treatment," and putting what energy she had after all the coffee enemas into convincing other desperate people to put themselves through the same misery. More than a few alt-med types would do well to remember "first, do no harm." They may not be able to heal, but they can at least stop making the patients miserable.

As for "alternative medicine," that's what the people promoting it like to call it. But I don't need to sugar-coat and euphemize: why are you defending quackery?

I'm currently curating a book on the modern food movement which Orac is aware of and I think it might be fitting to dedicate it to the lady's memory.

It's hard science and anti quackery but it's aimed at the fence sitters to educate them into making choices based on evidence, not becuase the person telling them is pretty.

Because she expresses herself in a more moderate fashion, I have a bit more tolerance for Eddy than I do most of the "how dare you judge Jess" crew...but still... we live in a world surrounded by links to "Best and the Worst of the Oscars gowns" and the "Worst Celebrity Plastic Surgery" and the checkout counters are chock-a-block with celebrity rags - how you possible imagine that any celebrity can escape criticism? When I was younger, girls criticized each other clothes, makeup and hair and it's only become worse - everyone judges everyone else's every scrap of food going into their gob as if it's a huge moral issue, according to whatever fashionable dietary superstition.

All the people that are outraged that anyone dare judge Jess need to grow up and join the real world. Your acquaintances, family, coworkers and employers are judging you all the time. Jess was selling a "lifestyle" literally. Her "cure" kills.

I was taught that healing from cancer is like a circle. Conventional medicine may contribute to partially completing the circle while other lifestyles factors such as nutrition, exercise, stress management, etc. can also add to it.
I think that everybody's journey is unique.
I also think that alternative or lifestyle medicine can give people a sense of hope and control over their situation. Traditional medicine can leave a person feeling extremely powerless.

"The thing I don’t understand is how rejecting the option of limb amputation (even after perfusion) can be a point of discussion for anyone, but Jess herself."

It is really getting tedious that so many people only read enough of the topic to make unwarranted comments. The point has been explained over and over and over and over and over again that no one has any issue whatsoever with what cancer regimen Jess Ainscough followed, or didn't follow.

The issue is not that she personally chose to reject surgery - the issue is that she touted the useless and dangerous Gerson products and its sadistic regimen. She made a personal fortune off the products and off her personal "brand" as the Wellness Warrior - she announced on her blog that within the first year she was making six figures - and without question she led other people to endanger their lives and/or probably die from seeking useless treatment - people who might have been saved - who might STILL be saved if they read these articles and comments and can take in the point of the article! Apparently, quite a few people simply cannot understand what they are reading.

"her life choices shouldn't be up for debate"

Then why did she put them up for debate? That is what you do when you set up a website, make public testimonials, sell products, appear on television and go on speaking tours touting your treatment regimen, make videos explaining your regimen, maintain a blog which allows public comments, etc.

I mean this is a person who literally made a video explaining how to self-administer coffee enemas. Yes, indeed her life choices are up for public debate.

Jackie,

It isn't "conventional medicine" that makes a person feel powerless. It's CANCER. Cancer is awful, and the reasons one person gets it and another doesn't are only beginning to be fully understood. To blame other people - the doctor - for the powerlessness one feels after receiving a cancer diagnosis isn't rational, though it's human nature.

So someone tells you coffee enemas will help, and you regain a feeling of "power," because coffee enemas, while kind of yucky, feel like a do-able thing. Feeling powerful is nice, but if the patient's feeling of power doesn't actually interface with reality, there will sooner or later be an even more terrible feeling of powerlessness. Better perhaps to actually understand one's situation in the first place? Blaming the doctor for your feeling "powerless" when you have cancer is just projection. Doctors - particularly oncologists - steel themselves against this, as they learn that most patients will do it, and that putting up with it is just part of the job description. (There really IS a reason we pay cancer docs good money - their jobs are all about confronting human misery, year in, year out.)

It's reprehensible to sell people a therapy that makes them "feel less powerless" by lying to them about its chance of success. In the case of Gerson, there is virtually no chance of success. (What "successes" there are, are unproven at best, and most likely represent cases in which either earlier medical or surgical treatment had been at least partially successful, or the person was misdiagnosed and didn't actually have a malignancy in the first place, or they were a statistical outlier - all cancers have them - who survived beyond the median or average survival time - and even many of those people, if you tracked them later, would likely prove to have had recurrences - that's if they didn't eventually seek conventional treatment once they understood that Gerson had not been curative).

Yeah, I don't expect new readers to read all 161 comments (thus far), but reading maybe a dozen or two would make it apparent to newbies that we've already discussed these issues multiple times.

Orac. You. Are. Awesome.

Reading through the comments I can't help but notice that none of the Jess supporters have addressed the issue that she was not honest about her deteriorating condition. Yes they have loudly defended her amazing attitude and brave decision etc, but they seem to have missed the BIG point - She neglected to mention that she was not in any way thriving.

There are no doubt people with cancer out there that, in the past year, have made the weighty decision to follow in her footsteps based very much on her thriving/healing testimony - a testimony that was in many ways fabricated, or at the very least heavily edited. Followers were led to believe that all was well when in fact she was bedridden and very, very unwell.

If she had been honest even three months ago it could have provided someone with vital information during their decision making process - a life and death decision making process.

She may have been the most wonderful and inspiring person but the dishonesty is not ok and it irks me greatly.

In the end Jess was used by an unscrupulous mob of anti-"Western medicine" freaks who all had their one-eyed opinions to blare from their rooftops. But the people I most feel sorry for are the young children who may have been forced by the adherents of quackery, who have been forced to undergo the extremes of Gerson therapy against their wills.

Even though Jess sold it, you aren’t just going after her and Gerson, you’re casting a wide net here.

If what's being caught up in that wide net are other alt med therapies like the Gerson protocol for which there exists either no evidence of efficacy or a body evidence of demonstrating a lack of efficacy, and people like Jess who have gone beyond simply embracing those therapies themselves to actively 'sell' (your word) them to others as well, it's entirely appropriate that wide net be cast.

But the terminology you use… such as ‘alternative medicine’, and your apparent wide implications, I feel unfairly include people and beliefs that you have no right to target.

Recall that by definition 'alternative' treatments are treatments that either have not been shown to work, or that have actually been shown not to work. By what rational argument does anyone at all lack the right to address them critically?

Conventional medicine may contribute to partially completing the circle while other lifestyles factors such as nutrition, exercise, stress management, etc. can also add to it.

First, let me note that nutrition, exercise, and stress management are integral parts of conventional medicine, despite alt med attempts to claim them for itself.

Second let me note that while there is evidence that nutritional and lifestyle choices may reduce one's risk of getting certain cancers, there's no evidence that they can be curative once one has already developed cancer.

"I was taught that healing from cancer is like a circle. Conventional medicine may contribute to partially completing the circle while other lifestyles factors such as nutrition, exercise, stress management, etc. can also add to it.
I think that everybody’s journey is unique."

But if you think "everyone's journey is unique" then healing from cancer isn't anything at all like a "circle" at all, is it? You're using sentimental, meaningless platitudes.

I have followed Jess's story on this blog for some time. I am very sad that she is dead, and yes, she had the right to make her own decisions, but by turning her illness into a business venture, she may well kill a lot of other people. I find myself wondering if she felt an immense amount of guilt over the death of her mother.

Last October, I had a deep excisional biopsy of two lymph nodes in my neck. I was fortunate that I had to wait less than a week to have the procedure, and got the pathology results within four days of the surgery. I can say that it was an anxiety-ridden time. I have two young children, and I was scared to death that I would be diagnosed with lymphoma. Contemplating cancer treatment and the possibility of a poor outcome is unpleasant, but I never doubted that if it was cancer that I would do whatever evidence-based treatment recommended by my doctors, be it chemo, radiation, or even stem cell transplant. My biopsy was thankfully clean, and because of this, some people think it was unnecessary surgery. I cannot wrap my head around this level of denial. Your best chance of being treated successfully is identifying cancer early. It took about a month for me to feel fully recovered from the surgery, but I do not for an instant regret it. Knowledge is power, a fact that seems to be lost on the majority of people in the alt-med movement.

@Marc #157

IMHO, Ainscough iwould be problematic as a dedication, because she's both victim and perpetrator, you could be seen as attempting to tap her celebrity and physical appearance, and you could receive negative publicity by using her name w/o consent of her family.

Though 'natural food' is a much wider ballpark than 'natural cures' and Ainscough kind of covers the whole ground, if 'natural cures' are a synecdoche of 'natural food" you might also consider a dedication to Makayla Sault — not that that would be without minefields of its own...

She did not advocate a raw vegan life style. Gerson therapy includes a multitude of cooked foods. I know she's passed, but let's please at least get the facts straight.

a-anon: "Alternative medicine does promise a short cut to wellness, .... in some ways, I think the opposite is true. By making their programs difficult and time consuming (while still making grandiose promises), the alt-medders can actually *become* your life. And that makes it all the easy for them to make you a devoted follower."

Yes. This. The more complicated you can make the regimen, the more people believe there must be something to it. Plus, the more time, energy, and money invested, the less likely that people will take the time to question or seek out rational alternatives because they're so wrapped up in what they're doing.

Up front, the alt-medders make it *sound* like the easier and of course, more "natural" alternative. But once you take that bait and follow one of their crazy theories, it becomes easier to believe and follow the next one (and the next one and the next one) without being able to objectively know whether any of it is working. Definitely a rabbit hole. Been there, done that.

Trust me - when quack labs dress their pseudoscientific tests up in legitimate-looking clothing, - aka
http://www.australianbiologics.com.au/
the chances of any poor bugger being able to tell the quackery from evidence-based testing diminishes exponentially.