Jess Ainscough, Belle Gibson, and "wellness warriors" vs. cancer

Recent articles in The Daily Mail and The Australian reminded me that it's been over a month since the unfortunate demise of Jess Ainscough, a young Australian woman who was diagnosed with an epithelioid sarcoma of her left upper extremity in 2008. Before I get to the articles, a brief recap is in order.

This is a very rare tumor that is generally slow growing but relentless, with most untreated patients dying within 10 years, although with radical surgery and complete removal of all tumor deposits it is possible to produce ten year survivals on the order of 49-72%, closer to 72% for young patients. Unfortunately, given the location of the cancer, after being diagnosed with this incredibly rare form of cancer at age 22, Ainscough was told that she required amputation of her arm at the shoulder. Also, given the fact that the only known potentially curative treatment for epithelioid sarcoma is wide excision with relatively large margins of normal tissue around the tumor, I originally surmised that she probably needed a forequarter amputation, which involves removing the arm at the shoulder joint, including the shoulder blade. It's a very disfiguring operation and not guaranteed to cure her by any stretch of the imagination.

Understandably, just as any young active person wouldn't want such a disfiguring operation, Jess didn't either, but initially resigned herself to it. Not long before her surgery her doctor offered her an alternative, namely isolated limb perfusion, a process by which a limb's circulation is disconnected from the body and the limb is perfused with very high dose chemotherapy. It worked at first, but the cancer recurred a year later. It was at that point that Ainscough abandoned conventional medicine and undertook Gerson therapy, complete with dozens of supplements, fresh juices twelve times a day, and, of course, coffee enemas five times a day. Being charismatic and media-savvy, over the course of a few years, she was reborn as The Wellness Warrior and became a media fixture down under, promoting healthy living mixed with woo like the Gerson protocol, even making YouTube videos singing the praises of coffee enemas and explaining how to do them. Meanwhile her mother developed breast cancer and also chose Gerson therapy instead of conventional medicine, a much more inexplicable decision given how much less deforming and more effective breast cancer therapy is.

Ainscough did well at first, actually for several years, but this is not surprising given that epithelioid sarcoma tends to be slow growing, even as it is deadly in the end. Bolstered by credulous media, she forged a happy career for herself selling "wellness"; that is, until biology caught up with her and her mother. First, her mother died about a year and a half ago. Then, a few months later, bloggers and Jess Ainscough's followers started noticing that her arm wasn't looking so good, that it looked as though she was developing more tumors and more deformities in her hand. In September 2014, she had to cancel an event, and by December she was forced to admit that her condition was deteriorating. Still she wrote as though she were planning on continuing as The Wellness Warrior in 2015, even as she admitted that she had consulted a conventional oncologist.

Then, a month ago she died, and within hours her social media pages were scrubbed and her website converted to a memorial photo. Meanwhile, her fans attacked anyone who commented on the story and questioned her having promoted quackery like the Gerson protocol. Things went quiet. Then Ainscough's fiance, Tallon Parmenter, sent out an e-mail to everyone on her mailing list. It was a sad and poignant e-mail, but unfortunately it also promised that Ainscough's blog would return and seemed to imply that Parmenter would be carrying on the legacy of The Wellness Warrior.

A day later a story appeared in The Daily Mail, which revealed more, but not nearly enough, about what had happened:

The devastated fiance of the late 'wellness warrior' Jessica Ainscough has written an emotional letter to her followers, revealing she was undergoing radiation treatment in her final weeks and 'giggling and drinking green smoothies' in her hospital bed until the day she died.

Ms Ainscough, 30, died in late February following a lengthy fight with a rare and aggressive form of cancer known as epithelioid sarcoma.

She spurned chemotherapy and radiation, choosing to fight the cancer with a controversial treatment known as Gerson Therapy, which involves a vegan diet and coffee enemas and does not have scientific support.

But after discussions with 'oncologists, healers and specialists around the world', in her final weeks - the most 'difficult' weeks of her fight - Ms Ainscough began a course of targeted radiation, her partner Tallon Pamenter has revealed.

You might remember that when Ainscough revealed that her health had deteriorated, she also described how she had developed large fungating masses that bled almost constantly. So it makes perfect sense that what would be recommended for her would be radiation therapy, because that's usually the first thing tried to control masses like this that can't be surgically removed anymore. This is how Permenter described it:

The plan for us was simple (it’s been the same since the start) - To do what ever the body needs to give it the best chance to fully heal. Before Christmas we were so relieved to receive scans confirming that the cancer had not spread beyond the original area. I actually smiled when our oncologist said ‘what ever you’ve been doing for the past 7 years seems to have been working’.

This was fantastic news however the fungating tumour in Jess’s shoulder had become large and painful. For the first time, Jess’ ability to enjoy her favourite things like walking our furbabies on the beach was becoming difficult.

After carefully discussing all options with oncologists, healers and specialists around the world, Jess was offered targeted radiation as the best option with a 50/50 possibility of improving her quality of life or limiting it further. This was a risky and tough decision but Jess bravely embraced this last chance option.

Given this seeming confirmation of Jess' account describing her tumor as not having spread beyond the original area made me wonder what had happened. Clearly, the tumor was bigger and/or her tumors were more numerous. (Remember, epithelioid sarcoma is rarely a single tumor; and it was easy to tell just looking at Jess' arm that she had multiple tumors.) I particularly have to wonder about this given this description by Parmenter:

Right up until the last day of her life, Jess was sitting up in the hospital bed with her best friends giggling and drinking green juice. Talking about upcoming wedding plans and future names for our babies. She never gave up and always had hope.

While the radiation did appear to shrink the large tumour mass, some complications arose during the final stages of the treatment. Not long after, the words I LOVE YOU would leave from my lips only to fall softly upon Jess’s ears for the last time. I said good-bye to the love of my life that day and my heart has been in a million pieces since.

First off, we know that Jess must not have been in the greatest shape if she was hospitalized. It's not clear how long she was hospitalized, but it sounds as though it was for quite a while. Most of the time, radiation therapy is administered as an outpatient, and even fungating wounds are usually dealt with as an outpatient with a visiting nurse to help with the dressing changes and periodic visits to the doctor to inspect the wounds and adjust the care based on what they look like. What could the complication have been? Sepsis? Certainly that's possible any time there's a huge fungating mass being treated with radiation. However, if she had life-threatening sepsis that ultimately killed her, it's highly unlikely that she'd be happily chatting from her hospital bed while drinking veggie smoothies even up to the day she died. She'd have become sick as snot, as we say in the biz, at least several hours, if not a day or two, before. I could see how, if she had a do not resuscitate order, sepsis might have taken her from seemingly as well as a patient with advanced cancer can be to dying, but given Parmenter's description of her optimism and belief that she'd live to marry him and have children with him, I doubt that was the case.

What about a pulmonary embolus (blood clot going to the lung)? That sounds more likely, particularly given that an upper extremity tumor such as what she had could easily have impinged on the major vein leading to her arm and causing a clot. True, pulmonary emboli from upper extremity clots, though not uncommon in patients who have such clots, are only seldom as deadly as they are when they originate in the leg veins, but they can still kill. The bottom line is that, unless Ainscough's family provides more detail, we'll never know what the terminal event is. It doesn't really matter that much, other than academic interest, anyway. In the end, the cancer killed her, as predicted.

In his letter Parmenter complains about "finger pointing" and "people wanting to lay blame for personal choices others have made," as well as how "unconventional" medicine has come under fire "to the point where family members are blamed for supporting a loved ones chosen healing path." While it is understandable how Parmenter and Ainscough's family would want to support her and offer comfort and reassurance, that's not the main reason why there has been criticism. Let's just put it this way. If Ainscough had simply chosen for herself Gerson therapy instead of conventional therapy and died, it would have been just as tragic, but it would have been just her and her family. She didn't. As the article in The Australian describes, she went far beyond that. Because the article's behind a paywall, I'll quote generously to give you the idea:

But wellness has become a lucrative business thanks to social media, as Jess Ainscough herself candidly admitted. After completing an online course at the Institute for Integrative Nutrition — a much-criticised for-profit academy in New York — she set herself up as a “holistic health coach” in 2011 and learnt the secrets of monetising her blog from the US business guru Marie Forleo, whose B-School program at the time operated under the slogan “Rich, Happy & Hot”.

“I knew I had the potential to change lives,” Ainscough later quipped. “The head-scratcher, however, was how I was going to make enough money to fund the lucrative, laid-back lifestyle I desired to live. Keeping the fridge stocked with fresh organic produce is pricey; let alone my penchant for nice clothes.” Ainscough mastered the language of feel-good salesmanship, telling her followers that $979 might seem a steep price for her Lifestyle Transformation Guide, but “‘I can’t afford it’ is one of the most dangerous and disempowering things you can ever say”.

As well as selling her own products — e-books, jewellery, online life-coaching — she earned money spruiking the products of others, and enthused on her blog about cosmetics, clothing and other merchandise sent to her for free. Ainscough seems to have been more transparent than most bloggers about her commercial tie-ins and freebies, but the seemingly personal nature of the wellness world is precisely why so many marketing companies use people like her as proxy promoters. By 2013 she had made enough money to repay her father for her medical bills and buy a $585,000 four-bedroom home on the Sunshine Coast with her fiance, plus a $30,000 SUV. “I earned six figures within a year of completing B-School and have doubled my income every year since,” she boasted in one post, adding that the program had taught her how to “organically attract an amazing tribe of people who trust me”.

In other words, if Ainscough hadn't promoted Gerson therapy and other quackery, using claims that she had cured herself of cancer, I would still be sad about her death, but I probably wouldn't have paid more than a single blog post's worth of attention to her story. That's the crux of the problem, not that Parmenter and others who loved Ainscough supported her through her ordeal. Before I read this article in The Australian, I really had had no idea just how lucrative The Wellness Warrior's empire had become—and how quickly.

The article also describes the more general phenomenon, of which Ainscough was a pioneering founder, of "wellness blogging." In particular, given that this all happened in Australia, I hadn't been aware of Ainscough's connection with Belle Gibson, a young woman who claimed that she had kept brain cancer at bay for four years without conventional medical treatment using a vegan lifestyle. As an admirer of Ainscough who had first encountered her at a conference in 2013, Gibson's rise in the "wellness" industry was meteoric:

Thus emerged Gibson’s sassy online persona that would earn her an admiring global audience. Like Jess Ainscough, she wrote darkly of conventional cancer treatment, saying she turned to natural therapies after collapsing and vomiting in a park from the effects of chemotherapy. Like Ainscough, she said she used organic nutrition and Gerson Therapy to heal herself, although she added craniosacral, Ayurvedic and oxygen treatments to the mix. Like Ainscough, she used blogging to build a devoted following of young women, to whom she then sold a “wellness, lifestyle and nutrition” guide called The Whole Pantry, which came in the form of an iPod and iPad app.

Launched in August 2013, Gibson’s app was such an immediate hit that within months she was being feted by Vogue and Cosmopolitan. Ainscough promoted her on her Wellness Warrior blog, and Penguin Books signed her up. By then Gibson’s Instagram account had become a real-time drama in which her 200,000 followers hung on every new development in her escalating medical crises — she was in hospital, she had collapsed at her son’s birthday party, she now had cancer of the uterus, spleen, blood and brain. In outpourings of mutual adoration, Gibson assured her followers they were revolutionising the world, even if she might not be around to see it, and they in turn told her she was amazing, inspiring, breathtaking, beautiful, genuine, courageous and angelic.

There's just one problem. Bloggers had been wondering about her stories for months, pointing out the many inconsistencies and how her stories didn't make sense, and finally allegations of fraud percolated up out of the blogosphere to the mainstream Australian press. Not long after Gibson attended Ainscough's funeral, The Australian revealed that it was all nonsense, that Gibson had had a long history of highly unlikely near-death stories and even admitted that some of her cancer claims were not true. In additional articles, it was revealed that friends had doubted her claims about cancer since high school. Gibson disappeared. It was learned that:

  • Gibson is lying about her age, and is three years younger than she claims to be.
  • In May of 2009, she claimed she nearly died on an operating table after undergoing heart surgery.
  • She has conceded that she was "misdiagnosed" with regards to her July 2014 cancer claim.
  • She cannot name her own doctor.
  • She claimed she had a forty minute long seizure at her son's party, a very serious medical event for someone with a brain tumor.
  • She went a trip two days later.
  • She still claims that she did once have a malignant brain tumor and that she extended her life using alternative therapies.
  • She claims that she is now seeking treatment from a conventional team.

Among other things.

As reported by The Independent, suspicions were raised when charities to which Gibson claimed to have donated profits from her book The Whole Pantry reported never having received any money from her. Things degenerated from there, with Gibson lashing out at her critics as her empire crumbled. Her Apple Watch app was pulled, and her book removed from sales, while photos of the clean-living claimant herself enjoying a pint were published, courtesy of a Facebook page Belle Gibson Uncovered. Meanwhile, Gibson could still face charges for her deception.

Of course, there is a big difference between Belle Gibson and Jess Ainscough. It's quite clear that Ainscough was a true believer who paid the price for her belief while it's not at all clear how much Gibson believes or if she's just a grifter. (I lean towards grifter, based on what I know and how she might have used the family of a boy with brain cancer to learn more about cancer treatments, which makes tales of patients who followed her even more depressing.) However, the similarity is that both of them were quite good at monetizing their skill at social media and promotion of "wellness" as "healthy living" supplemented by quackery like the Gerson protocol. I hope that Gibson gets what she deserves, but Jess Ainscough has already paid the price after living well for a while. That doesn't get her off the hook, though, because who knows how many her advocacy as The Wellness Warrior might have led down the path of quackery to their deaths?

The depressing thing about all of this is that none of this will stop the "wellness movement." Jess Ainscough's health finally starts deteriorating from her cancer, and Belle Gibson rises to take her place. Belle Gibson is revealed to be a fraud, and now apparently a woman named Candace Marie-Fox appears poised to take her place, while people who profited from their pseudoscience, like Ainscough's manager, make excuses:

Amid the anguish that ensued, Jess Ainscough’s management released a statement asserting that her only relationship with Gibson was on Instagram. That has not stopped Ainscough’s name being drawn into the wider debate about the ethical responsibilities of bloggers who have encouraged thousands, possibly millions, of people to believe that cancer can be cured naturally.

Ainscough’s manager, Yvette Luciano, insists there is no evidence that conventional treatment would have prolonged the lives of Jess or Sharyn Ainscough, as some medical commentators have argued. Luciano — who was diagnosed with breast cancer in 2010 and survived thanks to surgery, chemotherapy and radiation treatment — says amputation of Ainscough’s arm was only ever an “experimental” option. “I have known many women with cancer who do conventional treatments and still sadly pass away,” she says.

Yes, but they're much less likely to pass away if they don't rely on quackery such as what Luciano promoted through Jess Ainscough. Such hypocrisy infuriates me. Here Luciano is, having survived because of science-based medicine, and she's making lame excuses like this.

Unfortunately, there will never be a shortage of "wellness warriors" like Jess Ainscough, Belle Gibson, and Candace Marie-Fox. When one dies or is revealed as a fraud, others rise and the same people profit from them. Same as it ever was, only far easier, thanks to the Internet.

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Excellent post.

The wellness movement is definitely very controversial and I can only imagine the difficult decision a cancer patient must make when they are diagnosed; will they follow the regime set out by conventional medicine or turn to the wellness movement for alternatives. It is true that conventional medicine which follows the biomedical model does not have a guarantee but in my opinion has much more effective and more concrete treatments. I admit this is most likely because Western medicine is praised and revered as being the saviour of the human race and definitely accredited for far more than it should.

Alternative therapies such as juicing and eating vegan have their perks but unfortunately almost all of these therapies have no empirical evidence to support their effectiveness in cancer treatment let alone a better immune system. A diet named Raw Till Four, created by Australian fitness fanatic Freelee, demands a vegan lifestyle where raw fruit and vegetables are eaten until four in the afternoon and thereafter cooked vegetables such as potatoes are eaten. Yes the diet may work for those wanting a healthier lifestyle but is the diet healthy enough to strengthen the immune system to the point where it can combat and eliminate cancerous tumours?

By Liam Waddicor (not verified) on 05 Apr 2015 #permalink

Ainscough’s manager, Yvette Luciano, insists there is no evidence that conventional treatment would have prolonged the lives of Jess or Sharyn Ainscough

.

But there is evidence that Gerson therapy does? Say what?

"we’ll never know what the terminal event is. It doesn’t really matter that much, other than academic interest, anyway. In the end, the cancer killed her, as predicted."

I contend that it does matter, because the vague reference to 'complications' is a way of subtly implying that the radiation treatment was the cause.
If it was, then they should say it. If it wasn't, and it was instead a complication of the tumour, they should say that. With this question unanswered, it is too easy to say "she was doing fine until she sought conventional treatment", and have her somewhat deluded followers draw the conclusion that she died from the treatment.

...other than that - brilliant post, and thanks for doing this. These people make me ashamed to be Australian. I don't know what is going on down here . . .

Nothing more than the usual stuff happening in the antipodes. Won the World Cup as usual.

The one change is that the media is being more questioning of alternative health claims following the exposure of the media's duping by the Australian (anti-)Vaccination Network.

Which itself is a good thing.

Won the World Cup as usual.

ONLY JUST.

By herr doktor bimler (not verified) on 06 Apr 2015 #permalink

Quote: Yvette Luciano...
“I have known many women with cancer who do conventional treatments and still sadly pass away,”

Um, maybe the cancer was responsible.

I'm glad this hasn't happened to Ms Luciano, Oh, that's right, she has had conventional treatment...

It is true that conventional medicine which follows the biomedical model does not have a guarantee

I suspect this is a major factor that "wellness warriors" exploit. SBM practitioners are constrained by reality, and sadly, some fraction of their patients (particularly with cancer, but it happens with other ailments as well) will die despite the practitioners' best efforts. Woo-pushers of whatever stripe are not always constrained by reality, as the case of Ms. Gibson shows. So they will claim that their woo works, even when there is no evidence that it should, and even when there is evidence that it does not. It's the same technique by which financial scammers work: they claim that you will get favorable results (curing your cancer if they are woo-pushers, substantial monetary rewards if they are financial scammers) by following their program. And frequently, if you don't get favorable results, they will claim that it was because you did not believe hard enough in the program.

Not to mention that many people are afraid of dying. That's how many of these alternative protocols survive despite their obvious impracticality and expense. Some months ago an Orac post included the details of one such regimen (I don't remember which one), which involved hourly consumption of juiced vegetables during your waking hours, followed by spending most of the next hour preparing your next dose. I wondered at the time how somebody could follow such a regimen and remain gainfully employed and therefore able to pay for the regimen. SBM cancer treatments often involve periods of downtime (obviously for surgery and recovery, and many patients struggle to remain productive while undergoing chemotherapy), but at least there is an end game in sight with these treatments, and for many people, insurance will cover at least some of the expense. Alt-med gurus seem to expect that you will follow the recommended regimen for the rest of your life.

By Eric Lund (not verified) on 06 Apr 2015 #permalink

I suspect this is a major factor that “wellness warriors” exploit. SBM practitioners are constrained by reality, and sadly, some fraction of their patients (particularly with cancer, but it happens with other ailments as well) will die despite the practitioners’ best efforts.

I second this. It seems to me that woo practitioners can afford to offer guarantees since they're not constrained by reality anyway. They're in the business of making people feel good, and that includes assuring them that a cure is in their grasp. I can see the appeal of that particular fantasy world.

By Shadowflash (not verified) on 06 Apr 2015 #permalink

Although a lot of the guarantees (especially the money back kind) seem to to be highly conditional guarantees.

Where a lot of victim blaming comes in. They never pay out because even the longest siege against the castle wall of the patient fails the treatment the treatment never fails seems to satisfy the conditions one must meet to of get one's money back.

Share Orac's pessimism on the likelihood of cancer scammers giving up their livelihoods any time soon. But would hope that some of the media heat might be turned on sCAM fertility treatments which are, IMHO, only a step or two down from cancer woo in terms of unconscionable. Desperate vulnerable people willing to throw money at anything and far too easy for practitioners to claim success while shifting failure onto patients. Rarely any mention of cold hard success rates though plenty of hope for sale.

I know Orac has touched on reproductive therapies before and these Aus examples below may not be so relevant to him but a local debunker could find plenty to unpack there.

http://www.naturalfertility.com.au/ Offers acupuncture, tcm, massage and NLP (!) to treat infertility. Excerpt from clinic ebook: 'I am repeatedly asked by patients about our success rate, and the odds of them falling pregnant. Whilst it is a fair question, there is no straightforward answer. Fertility comes with so many variables. But what I can confirm is that the people who most often find success are those who have put in the hard work; eaten well, reduced stress, taken care of themselves and committed fully to making changes recommended by our practitioners.
Unfortunately, not everyone who comes to our practice is willing to commit and work hard. The reasons are many: they don’t have time, the lifestyle changes are an inconvenience, they don’t believe in it, they know someone who knows someone who said...Good health is good for everything, so there are no losers with our program, except the ones who don’t fully commit and give up too soon.'

This lot also offer a comprehensive range of fertility woo including osteopathy (?), naturopathy and of course acupuncture. Unlike most of them, they are willing to quote studies - selectively.
http://www.fertileground.com.au/fertility/fertility-acupuncture-melbour…

Of course there are dozens more the same and while the outcomes for patients aren't as deadly as for those following cancer quackery, there are still serious implications: financial, physical, emotional.

Re. Eric @ 8: Here's how you can afford to spend your day doing the electrically-powered equivalent of bovine grazing: Sell, sell, sell. Become a "wellness warrior" and sell it to others, and make big bank doing so. In other words, build an alt-med social pyramid scheme.

Belle Gibson is almost certainly a case of narcissistic personality. The incidence of NPD is said to have doubled since 2009, and even casual observation shows it's pandemic. Meanwhile the media are all a-tweak about autism, which attention also feeds one of the roots of anti-vax CT.

Promoting medical fraud should be prosecutable even where someone does not get direct financial gain. This is another area where "free speech" should be no excuse. Promoting it for financial gain should include liability for the outcomes of one's followers. OTOH the fraud come-ons can be embedded in testimonials ("autobiographical writing") as we've seen, making them as difficult to prosecute as terrorism recruitment and bomb plans embedded in works of fiction.

In the end we can hope that facts catch up with BS and that the media wise up and stop fawning over quacks and liars. Fortunately that would appear to be happening. Not a moment too soon.

By Gray Squirrel (not verified) on 06 Apr 2015 #permalink

Before Christmas we were so relieved to receive scans confirming that the cancer had not spread beyond the original area. I actually smiled when our oncologist said ‘what ever you’ve been doing for the past 7 years seems to have been working’.

This is bollocks. Ainscough may have been a true believer but she also saw the financial benefit and now her schtick is becoming a grift for others.

By Science Mom (not verified) on 06 Apr 2015 #permalink

I think that 'wellness warriors' are asking their audiences to believe that they are special indeed and not subject to the usual rules of society, commerce or even biology.

To them, *MOST* people follow SB treatments plans but they, themselves, see through that illusion and encounter the True Nature of Cancer ( or Things in General) and instantly understand what professionals fail to see despite decades of training and experience. Thus, they are visionaries and prophets.

There are similarities to alt med thought leaders or warrior parents: a woo-meister I survey constantly announces that only 5% of people can really discern what is occurring in politics or the economy whilst only 5% appreciate true excellence in the arts and OBVIOUSLY only 5% eat healthily ( i.e. as he does). Another talks about the 'sheeple' - the common herd. Thus being part of *their* fold, elevates one to lofty echelons of perfection. This is a great part of their mystique- exclusivity and being beyond the commonplace.

Freud wrote about the 'exceptions' - who thought that the usual rules of living did not apply.

By Denice Walter (not verified) on 06 Apr 2015 #permalink

Maybe it's just me but I found Ms. Ainscough's comments about finding a way to make enough money to "fund the lucrative, laid-back lifestyle" she desired to live, as well as her "penchant for nice clothes" really rubbed me the wrong way. In fact, I find it quite obnoxious. Especially since in doing so, she likely led others down the same path to unnecessary pain and early death, as she did to her own mother.

I just don't have the same kind thoughts about her as some do. You can get away with a lot in this shallow image-obsessed world if you look pretty and that's all I see in her: a pretty snake-oil saleswoman. I have especially unkind thoughts about the enablers and parasites who also made money off her. That manager is a real piece of work.

Gray Squirrel@13:

Belle Gibson is almost certainly a case of narcissistic personality.

Several commenters claiming to have known Gibson in high school have described her as a compulsive liar, and all her behavior certainly seems to confirm that.

Science Mom@14:

Before Christmas we were so relieved to receive scans confirming that the cancer had not spread beyond the original area. I actually smiled when our oncologist said ‘what ever you’ve been doing for the past 7 years seems to have been working’.

This is bollocks. Ainscough may have been a true believer but she also saw the financial benefit and now her schtick is becoming a grift for others.

I believe that quote was from the testicularly-challenged Tallon Parmenter, Ainscough's now-former fiancé, and therefore not worth a leaking sack of poop. Ainscough at least had an excuse for lying to herself. Parmenter has none and is most likely just whitewashing his own culpability in the whole rotting affair.

Denice, I think there is definitely a lot of that going on here. People enjoy thinking that they are smarter than the smartest people (doctors) and that they know something special no one else knows. Now I am woman who is around the same age as most of these wellness bloggers, so I am not picking on a group here, but I think that this is especially prevalent in middle-class white women of my generation. Perhaps an unintended consequence of the self-esteem movement?

At any rate, I am going after Candice-Marie Fox on my blog because I was shocked that the MSM, not two weeks after the Belle Gibson scandal, were already taking this woman at face-value. I wish that journalists could be professional and ethical, but since they can't, it will have to be up to us to demand the truth from these people. They can sell their juice and their crystals, but they cannot do so under the auspices that such quackery cured them of cancer. My goal will always be to either get the truth out of them, or to constantly follow their business around the internet and remind people that they never told the truth.

The media treats these stories as fluff or human interest stories, when they would not be farther from that. I asked it on my blog, but I will ask it here: would any of the news sites who published the story on Candice-Marie Fox curing her cancer using pineapple juice publish a story on a woman who claims she cured her AIDS using garlic juice? I doubt it.

In other words, build an alt-med social pyramid scheme.

Which works about as well as financial pyramid schemes do. It's quite lucrative for early adopters, but like any technique based on the Greater Fool Theory, it suffers from the flaw that there is only a finite supply of greater fools. And even for the early adopters, this technique just shifts the problem down the chain: instead of worrying what will happen when you run out of money, you have to worry what will happen when your followers run out of money. Either you recruit new suckers (often in competition with your earlier suckers, if they are attempting to recreate your success, or your mentors, who also have to worry about this), or you go out of business when your customer base runs out of money. Mike Adams and Gary Null are epitomes of the former path. The alt-med types who fall into the latter trap tend not to be as famous as the people Orac profiles, but at least two people became notorious for flaming out at the financial version of this idea: Charles Ponzi (for whom this type of scheme has been named) and Bernie Madoff.

By Eric Lund (not verified) on 06 Apr 2015 #permalink

I've had Psoriatic Arthritis since I was 12 and with both hips and knees replaced and right wrist fused all before turning 30 so I'm a black belt in fighting woo. Every other person has an anecdotal story of a miraculous cure. Tabloid TV has a sure fire arthritis "cure" every six weeks.

To close down the vegan/vegetarian (I'll never get cancer crowd), the "big pharma" conspiracy nuts and alt med zealots I only have to mention one name:

Linda McCartney

If all the money, a healthy diet and powerful connections in the world couldn't save her from cancer I'm pretty convinced all the woo they are pedalling isn't going to either.

By steelhips (not verified) on 06 Apr 2015 #permalink

Violet@18:

I wish that journalists could be professional and ethical, but since they can’t, it will have to be up to us to demand the truth from these people.

There's more profit in selling lies. That's what happens when generations of unimaginable hard work and incredible good fortune conspire to raise a pampered population of preening narcissists to whom self-esteem is deserved, not earned.

FWIW, when I become Emperor of the Known World, I'm going to pull a meritocratic reverse-Khmer Rouge and send all these mendacious MSM hacks to slave in the rice paddies for the rest of their days, and hand all their jobs to good folks like you.

As to the up-and-coming Ms Fox, I did a quick whois lookup of her healthcandy domain, but she's hidden her business identity behind a proxy registrar so is clearly not completely stupid. However, while she may be a Brit (our shame!), I don't imagine she'll be operating out of the UK or else she'd be getting the UK Cancer Act crammed up her in five seconds flat. (Our badscience.net forumites do enjoy that.:)

“I earned six figures within a year of completing B-School and have doubled my income every year since,” she boasted in one post, adding that the program had taught her how to “organically attract an amazing tribe of people who trust me”.

I'm going to guess that the huge income was for her actually secondary to the wonderful joy of learning how to "organically attract an amazing tribe of people who trust me." Learn how to push the buttons of the gullible and the result is socially organic. She flatters them; they flatter her: all is 'well' in the ego department. They've established bonds of trust.

They can then all turn around and talk smack about the unhealthy arrogance of their critics, who don't know how empowering it is to find someone and something they can really believe in.

@steelhips

To close down the vegan/vegetarian (I’ll never get cancer crowd), the “big pharma” conspiracy nuts and alt med zealots I only have to mention one name:

Linda McCartney

If all the money, a healthy diet and powerful connections in the world couldn’t save her from cancer I’m pretty convinced all the woo they are pedalling isn’t going to either.

That approach would work with rational people who are open to questioning their assumptions, but for those pushing these alt-med nonsense "cures", they would argue that she did not fully commit to woo treatment X, she did something else that tanked her health, etc. In short, if the treatment doesn't work, it's the patient that failed the treatment, not the treatment that failed the patient.

@Liam Waddicor: I don't myself know if an organic/vegetarian/vegan diet can prevent cancer, 'though I suppose it's possible that if started early enough in life it might reduce the risk of some cancers. But once the cancer is there, the only effect it has is to give the cancer cells a more expensive and complicated source of nutrients to grow on while it spreads and kills you. Cancer cells don't care whether you're feeding them organic quinoa in kale sauce or slaughterhouse floor sweepings fried in petroleum waste; it's all the same to them as they're going to snatch it up faster than your healthy cells can.

By Old Rockin' Dave (not verified) on 06 Apr 2015 #permalink

Every so often, I check the facebook page of Kid Against Chemo. It makes me sad to see so much concentrated Dunning-Kruger on one page.

Another 'healthy diet' maven also died of cancer-
Adele Davis.
She wrote non-SB books- which cited research carelessly and voluminously- over the decades, was adopted by the counter-culture in the 1960s and 1970s and her estate was sued rather successfully by parents whose children either died or were harmed by her sage advice.
( see Quackwatch and wikip----)

Although she warned about the dangers of pesticides and lack of vitamins, she didn't follow the usual vegan regime- in fact, she advocated drinking large amounts of milk as a cancer preventative- which apparently didn't work for her.

By Denice Walter (not verified) on 06 Apr 2015 #permalink

That approach would work with rational people who are open to questioning their assumptions,

What conclusions can you draw from one person's story?

Anna M. @#16.

You are in no way alone. When I read that quote I was utterly, utterly disgusted. I was also enraged. Any sympathy I had managed to nurture for this sad and - literally - terminally vain young woman completely deserted me.

A genuinely 'good' person, full of 'white light' and 'positivity' does not crow about how much money they have managed to cowl in. A genuinely good person does not boast about their chocking narcissism nor their revolting material greed. It is a truly disgusting thing to say. Especially when that wealth and good living is accumulated through the active promotion of suffering in others. Finally I understand what all that bollocks about 'self-love' really meant. I am very surprised Wellness Warrior was capable of such a sharp and honest piece of self-analysis!

If all the nay-sayers and comment-ninja's who rallied to abuse Orac over this whole saga can read that quote from their guru and not lose the majority of faith in her all-deserving greatness then they must be equally pathetic human beings themselves.

By Gemman Aster (not verified) on 06 Apr 2015 #permalink

Remarkable post.
It is clear that the wellness movement is based on empirical observations and is undoubtedly a social model. The Gerson therapy engages in moral crusade to change the way people live and influences the choices made, without the obvious use of bio-medicine.
Basically, regardless of the chosen model, be it the social or medical model, it is ones own preference, however I believe the line is crossed when one uses their lethal illness as a manner to engage in fraud.

By Yuko Tabei (not verified) on 06 Apr 2015 #permalink

Remarkable post.
It is clear that the wellness movement is based on empirical observations and is undoubtedly a social model. The Gerson therapy engages in moral crusade to change the way people live and influences the choices made, without the obvious use of bio-medicine.
Basically, regardless of the chosen model, be it the social or medical model, it is ones own preference, however I believe the line is crossed when one uses their lethal illness as a manner to engage in fraud.
15066810

By Yuko Tabei (not verified) on 06 Apr 2015 #permalink

Candice-Marie Fox works for an MLM company called Sevenpoint2, which promotes alkaline products for health issues. I am guessing that her exaggerated cancer story is a way to increase her sales for this company. She is also a member of The Liberators International, which seems to be about being spontaneous and free. Now, I do not understand how a person could possibly be into MLM schemes and at the same time purport to be someone who is all about throwing of the chains of modern oppression. It makes no sense.

Yuko Tabei @#30

I think everyone here - including Orac himself as clearly stated in this very post - would absolutely agree and indeed defend every adult's right to undergo the medical treatment of their choice. This includes the right to pursue no treatment at all if they wish. That has been reiterated so many times by now it is become a boilerplate cliche.

What enrages me personally is when ignorant people - of any walk of life, any gender and any medical status - who are filled with the arrogance of that ignorance attempt to persuade others to abandon proven treatment for their own personal brand of bollocks. That unbearably obnoxious quote from Wellness Warrior about supporting the gentrified life she desired by becoming an anti-reality pedagogue could not highlight more thoroughly this problem. Nothing could be more damning of her supposed 'love and light' message.

By Gemman Aster (not verified) on 06 Apr 2015 #permalink

a woman named Candace Marie-Fox

A Daily Mail writer uncritically repeating bullsh1t from a Multi-Level-Munchausen fraud? It's a matter of professional courtesy, as the lawyer said about his escape from sharks.

By herr doktor bimler (not verified) on 06 Apr 2015 #permalink

I was reading the Candace story and got distracted by a guy calling himself "Kid Against Chemo":

I couldn't help noticing the following two facts he asserts on his facebook page:

Kid Against Chemo
No I can't due to my kidney function my kidneys are damaged from my cyclosporine I have taken since a baby for my heart transplant
Like · 1 · 2 January at 15:25

Alexandria Yandt KAC
Were you vaccinated? Thanks!
Like · Reply · 1 · 11 November 2014 at 01:56

Kid Against Chemo
when I was little
Like · 1 · 11 November 2014 at 02:10

How likely is that a baby with a heart transplant (and obligatory immuno-suppression) would be vaccinated?

By Craig Thomas (not verified) on 06 Apr 2015 #permalink

A genuinely ‘good’ person, full of ‘white light’ and ‘positivity’ does not crow about how much money they have managed to cowl in. A genuinely good person does not boast about their chocking narcissism nor their revolting material greed. It is a truly disgusting thing to say. Especially when that wealth and good living is accumulated through the active promotion of suffering in others. Finally I understand what all that bollocks about ‘self-love’ really meant. I am very surprised Wellness Warrior was capable of such a sharp and honest piece of self-analysis!

If all the nay-sayers and comment-ninja’s who rallied to abuse Orac over this whole saga can read that quote from their guru and not lose the majority of faith in her all-deserving greatness then they must be equally pathetic human beings themselves.

No, Gemman Aster and Anna M. you really are not alone in that line of thought. What horrifies me even more are those who seek to keep the Empire going. It proves how very little they think of their "tribe"/followers that they seem to believe they can prop up their metaphorically naked & literally dead "Empress" and continue to make money as if said death were nothing more than a blip in their business plan.

Before these emails, ostensibly written by Tallon Parmenter (about the 'Love of his Life', remember) started to appear from virtually beyond the grave - I actually felt sorry for the guy and thought my natural inclination to compare him to Peter Dingle completely unfair. [Peter Dingle married Penny Dingle 3 days prior to her untimely death, having lived with her for about a decade, IIRC. Likewise, Mr Parmenter had years to ask his de facto to marry him yet waited until the last months of her life, when surely it was obvious that Jess Ainscough wasn't going to make it to their planned wedding date in September?] It’s just so much easier to feel grief for someone who has just lost a wife or fiancée though, isn’t it?

By AntipodeanChic (not verified) on 06 Apr 2015 #permalink

the vague reference to ‘complications’ is a way of subtly implying that the radiation treatment was the cause.

Not all that subtle. Parmenter claims that the cancer was under control, and that Ainscough sought radiation therapy not as a last hope for survival, but purely for cosmetic / mobility issues:

targeted radiation as the best option with a 50/50 possibility of improving her quality of life or limiting it further.

Then OH NO she died, why weren't we warned that could happen!!?
Fortunately Parmenter is above “finger pointing” and DOES NOT BLAME THE DOCTORS WHO KILLED HER.

By herr doktor bimler (not verified) on 06 Apr 2015 #permalink

Violet@31

Candice-Marie Fox works for an MLM company called Sevenpoint2, which promotes alkaline products for health issues.

Oh boy, I'm sure Kreboizen is thrilled about that.

Gemman Aster@32
Pretty sure Yuko Tabei is a bot. Luckily RI hasn't had too much of an issue but some of the other ScienceBlogs are absolutely overrun.

If all the nay-sayers and comment-ninja’s who rallied to abuse Orac over this whole saga can read that quote from their guru and not lose the majority of faith in her all-deserving greatness then they must be equally pathetic human beings themselves.

I'm certainly curious what happened to them. Have they moved on to the next false prophet or are they still worshipping at Ainscough's grave? Even though there was never the deluge of comments until Orac wrote on Ainscough's passing all his previous articles attracted at least one or two wandering Warriors. Has her tribe dissipated (as a cult without a leader is wont to do) or is RI just too far off their radar now? I like to hope that at least handful of them made it back out of the rabbit hole.

Craig Thomas@34

How likely is that a baby with a heart transplant (and obligatory immuno-suppression) would be vaccinated?

Tough to say. Per the CDC guidelines the only contraindicated vaccines would be MMR, varicella, and zoster. Moderate to severe acute illness is a caution for all of them so I wouldn't be surprised if the early ones were at least deffered. The CDC doesn't mention chronic illness, but my state's (IL) guidelines (pdf) say:

The great majority of persons with chronic illnesses should be appropriately vaccinated. The decision whether or not to vaccinate these persons, and what vaccines to give, should be made on an individual basis.

So, I'd imagine that even if not on schedule he would have gotten everything besides those 3 above. There's also a good chance if he got (gets?) flu shots they are not the live attenuated influenza vaccine but the inactivated one.

By capnkrunch (not verified) on 06 Apr 2015 #permalink

I want to address an elephant in the room her regarding a similarity shared by Ms Ainscough, Belle Gibson, Candice-Marie Fox -- and for that matter the Food Babe -- in that they are are all exceptionally attractive. Notice that none of them is even average in the looks department, let alone below.

Point being that people are mistaking an image, a brand, for actual science. Sex sells, and in this case it is selling cancer woo. When people see someone who looks as physically attractive as them, I think it kicks off cognitive dissonance with the idea that they are deathly ill.

I'm willing to be that after this latest group of 'wellness' advocates fade away, the new wave will be similarly attractive.

Bottom line is that for people attracted to this, I think science is so far down their priority list that they are easily suckered by the image portrayed.

I guess what I'm getting at is that those who follow these misguided Pied Pipers of Woo need a lot more than someone explaining the science that confound the tall claims. They need a complete overhaul of their worldview...

Forgot to add my reply/post (41) was addressed to NZ Skeptic post 40

By James Peters (not verified) on 06 Apr 2015 #permalink

NZ Skeptic #40
Looking at the 80k $ the treatment is going to cost her, it's obviously not ineffectual for the people offering it.

By Peter Dugdale (not verified) on 06 Apr 2015 #permalink

Violet #18

The bits of the UK meejah which have reported Ms Fox's "cure" - The Mail, The Mirror, The Express and Metro that I have found - are not exactly paragons of journalistic accuracy.

The Mirror does mention this though: "Oncologist Mark Simon, director at the Nutritional Oncology Research Institute in California, has helped Candice, and said: "Diet plays a major role along with regular exercise, positive attitude and even spirituality.

"Fruits like pineapple contain a mixture of proteolytic enzymes such as bromelain known to have anti-cancer activity.

"Science does not provide all the answers and we most remain open to forces beyond our comprehension and understanding."

Which definitely makes the BS meter begin to twitch.

And to quote Teh Wiki on the form of cancer Ms Fox apparently had: "Depending on source, the overall 5-year survival rate for papillary thyroid cancer is 96 percent or 97 percent, with a 10-year survival rate of 93 percent."

Aaaah, Violet has covered post 44 on her blog: excellent!

Notice that none of them is even average in the looks department, let alone below.

Not this again. I'd say Belle Gibson is downright homely.

Oncologist Mark Simon, director at the Nutritional Oncology Research Institute in California, has helped Candice

Mark Simon is the "Nutritional Oncology Research Institute". He claims "a diverse background in many scientific, biomedical and engineering fields" (but not, alas, oncology), and sells selenium.

By herr doktor bimler (not verified) on 06 Apr 2015 #permalink

Well, if (or when) a cancer suffering follower of Jess Ainscough dies due to untreated cancer it'd be more of manslaughter thing. Her activism would have factored into that death, but it was at least in part dictated by her misplaced faith in the Gerson woo. She made a lot of money promoting it, but at least I would not consider her a grifter.

Looking at Belle Gibson though? If someone followed her and chose quackery ove SBM therapy for cancer, that'd be a borderline murder....

By The Smith of Lie (not verified) on 07 Apr 2015 #permalink

That unbearably obnoxious quote from Wellness Warrior about supporting the gentrified life she desired by becoming an anti-reality pedagogue could not highlight more thoroughly this problem. Nothing could be more damning of her supposed ‘love and light’ message.

It's like a prosperity gospel.

Ainscough, Gibson, and now Fox. Quite the trend. I think we'll continue to see more, unfortunately. Clearly some have seen the potential for easy money. Made easier & faster thanks to social media and the fact that you can get away with it. The online news media breathlessly report these snake-oil promoters' ludicrous claims as if they were proven facts. Governments don't do anything. So basically you can get away with making outrageous and dangerous cancer-cure claims, while making heaps of money so you can live a lucrative lifestyle and buy nice clothes. Obviously there are enough dupes to send you cash, even if you prove yourself wrong (by dying) or by being outed as a fraud.

If you do get outed as a fraud, you just need to ride out a bit of embarrassment. It will be brief because the next social media star will come out blazing, grabbing the media's and the dupes' attention. Before that happens, you stand to make a nice wad of easy cash and live the life of Riley in the meantime.

There should be a website with info about dead health gurus and how they died.
Like http://whatstheharm.net, only with accounts involving the promoters of "alternative" therapies.
Otherwise people like Jess Ainscough will just be forgotten in time, and other people will take their place.

EBMOD@39:

I guess what I’m getting at is that those who follow these misguided Pied Pipers of Woo need a lot more than someone explaining the science that confound the tall claims. They need a complete overhaul of their worldview…

Good luck with that. The whole point of their worldview is to place themselves at the center of it. The last thing they're going to do is willingly tear down all that deliberate self-deception, because without that they have to accept the harsh truth that they are non-achieving nobodys just like most of the rest of us.

The fact that deep down they know this to be true only makes them work harder to reinforce and amplify the lie. Hence widespread propagation as the inevitable next step, as if other people are willing to believe in your own inherent Greatness then it must be True. The only difference between the figurehead and the sycophants is that that latter haven't even the courage to take the lead themselves, so must depend on their superior for their own rubbed-off glory. Hence their extra aggressiveness when criticisms are directed at Dear Leader as opposed to just themselves, because not only does it threaten that entire belief system but it outs them as weaklings themselves: clingy, needy dependents whose strongest beliefs aren't even their own.

...

As to how to fix it, who knows? First and foremost, people must want to think rationally. And then they need to be taught how, ideally from as early an age as possible. (I think the capability for abstract thought kicks in around 7 years, which is likely a prerequisite for the critical thinking and analytical questioning involved, though I'm sure any child psychologists can correct me if I'm wrong.)

That means teaching kids how to think independently and criticize not just their own beliefs and assumptions but everyone else's as well. And good luck trying to get that past the parents, politicians, education systems, industry, popular culture, and every other entity that determines what the next generation will and won't learn. Yet the last thing any of that lot want is their own irrational belief systems - and all the benefits accrued - smashed to pieces by the honest, unfliching inquiry of their very own children...

craniosacral

C'mon. That's the sort of name you give to a bogus treatment in a satire to let the less bright members of the audience know it's a fraud.

By Andreas Johansson (not verified) on 07 Apr 2015 #permalink

#54, why some topics are so hard to satirize. Coming up with something more ridiculous than the reality as currently observed is next to impossible.

From the article NZ linked to @ 40:

Prebble has already had a large section of her leg removed around the cancerous growth, as well as 11 lymph nodes

But, of course if she achieves a better than expected outcome it will be the German hyperthermia--not the standard of care surgical intervention--that's credited.

... [Tallon Parmenter's email] also promised that Ainscough’s blog would return and seemed to imply that Parmenter would be carrying on the legacy of The Wellness Warrior.

He wishes to carry on the lifestyle to which he's become accustomed. I bet there are enough true believers to allow this to happen, even though his fiance died from these therapies.

By LinnieMae (not verified) on 07 Apr 2015 #permalink

@ Andreas re: #54

I find the terms "craniosacral" and "gut-brain" eerily close to "head up the arse", but, admittedly, I have a very juvenile sense of humor.

• • •

This one, Amanda Rootsey, is irksome (to me, anyway).

Diagnosed with cancer. . . failed to "heal (her) body naturally". . . was rescued by conventional medicine. . . and pronounced cancer-free. But really, all she has to say about that is that chemo and radiation made her feel bad - that she couldn't walk, lost her hair and was "on the brink of death!!" after 6 months of treatment. I can't find any expressions of gratitude for her physicians and nurses, or for the staggering amount of R&D that went into developing the therapies allowed her the opportunity to earn a living with her moist and dewy gentleness. At least she doesn't claim that diet and alt-med cured her. . .

Does anyone see a simple "thanks, Dr. ___ " in here, anywhere?

http://www.amandarootsey.com.au/who-is-amanda/
www.shinefromwithin.com.au

#57. Cynically that makes me feel even more strongly that the wiping of Jess off the web was a calculated move. How can he expect to make the maximum possible money off her if he has to compete with what she wrote while alive?

#59 - I suspect wiping all of the blog posts and comments allows Parmenter the opportunity to hide the evidence that Jess actively provided advice to her followers to abandon legitimate treatment. She engaged with them in the comment section, using as many weasel-words as possible to limit legal liability.

Hopefully the Wayback Machine will allow for people to get evidence of this.

From Beth: "There should be a website with info about dead health gurus and how they died."
My first nomination is for J. I. Rodale, the publisher of Prevention Magazine. In 1971, aged 72, he went on the Dick Cavett Show and bragged about how healthy he was, saying ""I'm in such good health that I fell down a long flight of stairs yesterday and I laughed all the way", "I've decided to live to be a hundred", and "I never felt better in my life!" He had also previously bragged, "I'm going to live to be 100, unless I'm run down by some sugar-crazed taxi driver."" While on the guest sofa he quietly had an MI. Despite CPR from physicians in the audience he died within hours.
Second is weight loss guru Robert Atkins. While he didn't die as a result of the Atkins Diet, when he died from a slip and fall injury, he weighed over 250 lbs(While he did have heart disease, it was almost certainly due to a viral cardiomyopathy and not atherosclerosis.).
This raw food diet blogger has an interesting post:
http://www.fredericpatenaude.com/blog/?p=1956

By Old Rockin' Dave (not verified) on 07 Apr 2015 #permalink

Over on her facebook page, Candice-Marie Fox just wrote the following:

"This way may not work for everyone as it takes a lot of self love, commitment and self belief..."

How disgusting is that? This is something that so many "wellness" bloggers put out there. It is in line with "taking responsibility for your health". Does Candice-Marie Fox really believe that people who die from cancer simply were not able to muster up enough self-love to survive? I try very hard to keep my emotions in check when I do this, but this quote from her has made that impossible. Who would say something so awful? The message here is that only people who are "good enough" get to survive cancer; the rest were all too lazy to commit to believing in themselves.

Thank you Candice-Marie Fox for writing that. You just reinforced my motivation to continue my demand for the truth from you. You won't be out in the public, making cancer patients feel guilty about being sick without me there to counter it. I am totally fed up with this vile abuse of people who are already sick, and who are at their most vulnerable and their most desperate. It is heartbreaking to think that there are people out there in this world who would exploit that in order to make money.

The German treatments sound very uncomfortable and the fact that they will also be utterly ineffectual makes it doubly tragic.

NZers (I suspect) have generally grasped that "cutting-edge cancer therapies at a Tijuana clinic" are total grifts, after a series of high-profile cases like Liam Holloway -- whose parents decided that chemotherapy for neuroblastoma was unnatural and scary -- and Bruno Lawrence giving the last of his money to the Hoxsey scammers.

Equally fraudulent money-extraction clinics in Germany or Switzerland -- Klinik Winnerhof or Leonardis clinic or what-have-you -- still somehow retain an aura of legitimacy. There is a sense that "Oh, they must be legit or the authorities would close them down".

By herr doktor bimler (not verified) on 07 Apr 2015 #permalink

capnkrunch @38: They're not a bot, they're part of a school (university? high school?) project.

But I do wish that they would engage in conversation rather than posting one thing (sometimes basically all the same thing) and then leaving.

Folks in the school project, stay and talk!

By JustaTech (not verified) on 07 Apr 2015 #permalink

As a previous cancer patient Violets comment #61 hits the nail on the head for me. Yep it is utterly disgusting the way some wellness promoters perpetuate the vile myth that if you die you just didn't think positively enough. I don't think these greedy idiots have any understanding of the damage they are doing.

It's funny how wellness gurus talk of being natural and authentic but promote positivity as a treatment for cancer. When going through treatment (chemo, rads, Herceptin) I was terrified to allow myself to feel what I was naturally feeling (sad, angry, tired, scared). It was a relief to find Oracs blog. Well done Violet for what your doing over at your blog too. It seems like a huge game of whack a mole as new wellness gurus keep popping up. Wellness blogging is obviously a very lucrative business. Great for the old ego too, with followers hanging off your every word and constantly being told how wonderful you are.

Thank goodness the wellness industry is being scrutinised much more since the sad passing of the Wellness Warrior
& the exposure of Belle Gibsons lies. I'm angry with the newspapers and magazines that print cancer cure stories with no questions asked. Sadly I'm not a good writer but I will be keeping my eyes peeled for ridiculous cancer cure sorties and shooting off complaint letters to editors. The more of us that do this and raise awareness for the truth in cancer stories the better.

Equally fraudulent money-extraction clinics in Germany or Switzerland — Klinik Winnerhof or Leonardis clinic or what-have-you — still somehow retain an aura of legitimacy. There is a sense that “Oh, they must be legit or the authorities would close them down”.

Well, Germany and Switzerland are white European countries. Obviously nothing shady would be allowed to go on there, unlike in Mexico, where all those Mexicans live.

Well, Germany and Switzerland are white European countries.

There is a wide racist streak in the collective NZ attitude towards alt-heatlh. Our pundits and newspaper columnists have written columns supporting European families who turn fugitive with their kids to save them from the rigours of court-ordered chemotherapy (when it's all about the parents' rights to choose), while condemning Polynesian families who treat a kid's cancer with herbs and tribal flimflam (when it's all about the parents' ignorance). The same columnists.

By herr doktor bimler (not verified) on 07 Apr 2015 #permalink

@Loolie, I plan on putting up posts that name the journalists and news site that do not fact check. Case in point: Mark Simon is not an oncologist but was called one in every single story on Candice-Marie Fox. It took me less than one minute of googling to work that out. They are just SO lazy, unprofessional and unethical. We are going to have to police this and call them out publicly.

@hdb:

That attitude doesn't seem to be unique to New Zealand, although it doesn't play out exactly the same way here. Canadians and liberal USians are longer supposed to be racist toward our own Indians, but all those Indians south of the border are sort of another matter a lot of the time.

Complicating things is the fact that Tijuana is a very unsavory place - just ask my uncle Jesus - and Mexico is bordering on failed-state-hood, but a lot of people over here would also look much more askance at a medical treatment offered in Mexico as compared to a similarly bogus treatment offered in Germany or Switzerland for reasons that certainly can't be said to have nothing to do with race.

Which reminds me, I was looking up Liam Holloway to refresh my memory (he was an NZ toddler whose Fundamentalist parents decided that death in Tijuana from a treatable cancer was preferable to scary hospital stuff) and came across the comparable Canadian case of Tyrell Dueck:
http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=102613

That was 2000, and doesn't seem to appear in Orac's archives.

By herr doktor bimler (not verified) on 07 Apr 2015 #permalink

But I do wish that they would engage in conversation rather than posting one thing (sometimes basically all the same thing) and then leaving.

Well, sometimes they glom together to simulate a conversation, but it's with each other.

I agree with the commenter above (close to the beginning but I want to finish this and go home so laziness wins) about infertility treatment. That is a ripe ground for woo. I too was sucked into acupuncture for infertility. In the end, I just couldn't keep up with the cost, and the fact that the research I did proved it was all pretty much bogus. But they do make you feel bad for stopping. I got a personal phone call from the lady acupuncturist trying to persuade me to come back as I would never get better without really believing in the treatment. Infertility treatment is expensive anyway, and at my last clinic they had pamphlets all over the lobby for the acupuncture clinic downstairs. It made me really sad to think that all of these people were probably spending money on real medicine and more money on fake medicine. Or that they were being guilted into it with these shiny pamphlets urging them to 'maximize' their chances of 'successful' conception and pregnancy. Damn everyone in the fertility clinic is stressed out, riding a hormonal rollercoaster, as well as the emotional one of trying (and failing)not to get your hopes too high this cycle. That's the game people. It sucks. A year each I spent in fertility for two healthy pregnancies. And I won the lottery. I can't tell you how many women I have seen crying in the fertility clinic. I have been one myself. When I finally got pregnant the first time to almost immediately miscarry. But I have my son, and in about 10 more weeks I hope to add a healthy daughter.

“This way may not work for everyone as it takes a lot of self love, commitment and self belief…”

Pretty ironic coming from someone who clearly is deeply uncomfortable with the eyebrows that G-d gave her.

@Old Rockin' Dave #61
James Fixx, running guru, repeatedly quoted pathologist Tom Bassler's assertion that any nonsmoker fit enough to run a complete marathon in under four hours would, regardless of his or her diet, never suffer a fatal heart attack.
Died of a heart attack while out running.
Adelle Davis, said she had never seen anyone who drank a quart of milk a day as she did, die of cancer - died of cancer.

But I do wish that they would engage in conversation rather than posting one thing (sometimes basically all the same thing) and then leaving.
Well, sometimes they glom together to simulate a conversation, but it’s with each other.

It is hard to blame the kids who have been tasked with the assignment of skimming a ScienceBlogs post and leaving an opinion (however vapid or anodyne), signing it with a number to get their credit.
I blame the teacher who decided that freeloading on someone else's resources and polluting science blogs with meatbot spam would be somehow educational. Kids, your teacher is a gormless numptie who's wasting your time as well as everyone else's. Tell him or her to put down the newspaper and do this 'teaching' job. Say that Herr Doktor said so.

By herr doktor bimler (not verified) on 07 Apr 2015 #permalink

Narad @#40

I agree. It shouldn't matter how pretty or plain they are. However their looks are absolutely central to the current school of alt-health. It was not enough for Wellness Warrior to seem cured of her disease, she had to be cured AND capering around, leaning to one side and grinning wackily in every single photograph taken of her. Both her and Gibson's entire wellness movement is far more about lifestyle than it is about their specific brand of woo. They are selling the beauty as much as the arse-java.

By Gemman Aster (not verified) on 07 Apr 2015 #permalink

They’re not a bot, they’re part of a school (university? high school?) project.

A cursory examination of some of the names suggests to me that this is an early post-secondary joint.

So over on her facebook page https://www.facebook.com/pages/Healthycandyme/298350183626122?fref=ts Candice-Marie Fox is doing that thing wellness bloggers do when you ask them for proof of their claims. She is saying we are harassing her, being mean, being negative, trolling, etc. She still will not produce proof of her claims, nor explain how the media got so many parts of her story so wrong. This is why we must keep on these people. They are masters at dodging a direct request for proof, and they are very slippery in terms of wiggling out of answering a direct question.

@Narad, JustaTech, herr doktor bimler
I wonder what school it is. Obviously somewhere in Pretoria. I bet a whois of the IPs would give it away pretty quickly. Hopefully the SB staff will look into it. The large number makes me think it's a school or at least grade wise project. Seems like an abuse of trust of goodwill.

By capnkrunch (not verified) on 07 Apr 2015 #permalink

Violet (#78): has Ms Fox got round to barring folk from her FB page yet? A la Lynne (What Doctors Don't Tell You) McTaggart? My FB alter ego is barred by her for having the temerity to challenge the medical credentials of her "editorial" board: hint- they don't have any.

Gentle readers from other parts of the world would do well NOT to look up WDDTY, which is a veritable midden of woo-tastic lies and fabrication. An attack of the vapours would surely result.

#72 Sorry you got dragged into that, especially at such a difficult time but kudos to you for sifting out the shonk and glad you're well on your way to 2nd round parenthood.

I don't have personal experience of fertility treatments but am acquainted with a few woomongers and it strikes me that fertility treatments do lend themselves particularly well to patient exploitation given that a significant proportion of their clients will get pregnant no matter what the therapist does.

It's disturbing to me that some legit IVF clinics are explicitly or tacitly endorsing nonsense adjunct treatments and, as evident in your account, the potential harm is non-trivial.

It's saddening to think of people often already under considerable physical, mental and financial stress being pressured to dig into their pockets for what amounts to mostly expensive relaxation with maybe a side of emotional blackmail. Then there are the people who waste months, perhaps years, on alt-med treatments before consulting a specialist.

fertility treatments do lend themselves particularly well to patient exploitation

Tangentially:
There is a man in London, UK, who is rumored to have made a living by handing out "you will have a son" cards to complete strangers in the streets.
The cards are also including a line on how to later get hold of the diviner, should the happy new dad/mom wishes to make a donation.

By Helianthus (not verified) on 07 Apr 2015 #permalink

I have a friend whose mother has recently been diagnosed with breast cancer. I personally know how difficult it can be to make a decision on whether you are going to do chemotherapy or not. Many people think they have a say in your decision and it was very hard for my friends mother to make a choice since everyone tried to tell her what they think she should do. At the end of the day she told everyone that it is her choice and hers alone, she told them that she appreciated their support and that they should please accept her choice. She decided to do the chemotherapy and on the 21st of March she had her last chemo session and today she is cancer free !!! I also had the opportunity to do some shadow work at a hospital a few years ago, where I met the loveliest elder lady who just found out that she had lung cancer and she told the doctors and her family that she doesn’t want any chemotherapy or medicine to extend her time her on earth. Her family cried and begged her to please do the chemotherapy but she refused she said that she had lived a long and happy life and that she is now ready to go… the point I’m trying to make with these stories is that everyone has the right to make their own choice whether they want to receive and treatment or not and we are not allowed to try and pressure them into something we want them to do.

@Colleen - and the major point of this article is that these "wellness warriors" are encouraging people to forgo conventional treatments under false-pretenses (even Jess, at minimum, mislead people as to her actual condition).

The key to making the best choice for you is to get the best and most truthful information on all the risks and benefits.

We don't care what choice people make, it is feeding people misinformation for fun and profit.

Firstly, great post. Australia is in a wellness blogging epidemic and since Jess Ainscough's death, they have been toppling like dominoes. Aside from Belle Gibson, celebrity chef turned paleo warrior Pete Evans had his paleo baby book pulled from sale for a 'bone broth' baby formula substitute that dietitians warned could kill babies (due to 10xRDI vit A). The nutritionist who co authored the book, Helen Padarin, is under regulatory scruitiny
Incidentally, she also claims to 'cure' autism with diet and naturally is an ardent anti-vaccinator. Now we have bikini blonde health blogger, Ashy Bines, who sells a $60 per week bikini body program, who just yesterday was accused of blatantly plaigerising large slabs of her program content, literally cut and pasted from other sites. I would like to say that bloggers who sell their products should be accountable for their content, but let's face it, if homeopathy is still an industry and vitamin companies can make dubious claims about 'super foods' etc, I'm not hopeful.

@ Kiiri -- hoping right along with you for a successful outcome in 10 weeks!! :)

By Scottynuke (not verified) on 08 Apr 2015 #permalink

capnkrunch @79: And they're starting to show up at SMB too.

I'm starting to agree with herr doktor.

By JustaTech (not verified) on 08 Apr 2015 #permalink

In his autobiography, Isaac Asimov complained about teachers who assigned students the task of sending a letter to an author with a request for a reply.

By Mephistopheles… (not verified) on 08 Apr 2015 #permalink

Violet

April 7, 2015
Over on her facebook page, Candice-Marie Fox just wrote the following:

“This way may not work for everyone as it takes a lot of self love, commitment

Cool. I'm bound to make 120 then.

By Craig Thomas (not verified) on 08 Apr 2015 #permalink

As a neighbour I have had many conversations with parmentor and sorry but all is not well in the state of Denmark !
I honestly cannot believe he wrote the email be puts his name to . . .

anon @92 Do go on...

By Charlotte (not verified) on 11 Apr 2015 #permalink

Anon @ #92, you are confirming my suspicions that it was an email written by the publicist/manager. Comparing it to his style of writing on his FB, it looked very, very off...

I think that the idea brought forward by RawGosia mentions a very important fact.
A treatment can have different effects on different individuals even though they have the same type of condition.
A good example is the effect of antineoplastons on patients with the same type of cancer. One patient reacted positively to the treatment while another did not. Two people with precisely the same condition can therefore react differently to the same treatment. This is due to their individual backgrounds where the individuals' carcinogens of that specific cancer differ. This causes them to react differently to the same treatment even though they have the same specific type of cancer.

A miracle cure can therefore still have no benefit for someone, or end up sounding more beneficial than it truly is. As seen with the wellness warrior.

So to conclude there usually isn't a universal treatment for every type of ailment, disease, cancer and so forth, but taking health into your own hands and ignoring professional opinion can result in more problems than there initially existed. Damage that could have been prevented and maybe even treated.

15009212

By Jacobs, JJ (not verified) on 13 Apr 2015 #permalink

A video where Jess Ainscough talks about Gerson therapy:
https://youtu.be/sNoeaSTnDR4
You can get a bit of a feel for what was going on with her from the video. It sounds like Jessica was taught this faith in natural cures by her mother, like a childhood religion, and she believed it like a child believes their parents.

I totally agree with everything (Andrea melbourne
October 17, 2013)
states in one of your derogatory posts about Jess Ainscough.
After having worked as a nurse for 12 years I saw absolutely no miracles...only the accident/burn victims had some sort of success!
Every single woman I've known with breast cancer was buried a few years after the initial diagnosis of a pea sized lump, with all the modern treatments and all!
Why do you feel the need to bash those who wish to follow another approach?
My son whose asthma was so bad that he needed to be treated at home with ventolin masks when he was 4-5 years old, started to do much better after we visited a chiropractor who merely aligned his spine and gave me dietary advice...within a few weeks my young son no longer needed the ventolin aerosols because as soon as he wheezed just a bit I would do natural home treatments and all would go back to normal.
I have yet to see the miraculous recoveries of conventional medicine; people who have serious illnesses become slaves to the drugs and Dr. appointments; I know certain people who go to the Dr every week and need a nap when they return home - is that quality of life?
You are free to opt for what is best for you, but leave those who wish to follow another path alone.
Your totally derogatory posts make me think that you use bashing as a way to promote your beliefs!

Every single woman I’ve known with breast cancer was buried a few years after the initial diagnosis of a pea sized lump, with all the modern treatments and all!

Have you ever heard of confirmation bias?

BTW, what kind of nurse are you? Do you take care of breast cancer patients regularly? I do. Most of my patients survive. because breast cancer is treatable if it hasn't spread beyond the lymph nodes under the arm.

BTW, what kind of nurse are you?

All EMelo's patients died. I ask myself, what did they have in common?

By herr doktor bimler (not verified) on 22 Apr 2015 #permalink

Nurseferatu...

I have ES. The truth is that it is not uncommon for ES patients to have long stretches of stability between what seems the inevitable recurrence of this disease regardless of the chosen conventional treatment path. For many, ES is a slow growing (albeit incredibly persistent and treatment-resistant cancer). It can take many years before a patient’s next recurrence is detected so any CLAIM that months or years of stability can be attributed to coffee enemas, eating lettuce, peach pits, or even current chemo regimens would be a stretch to say the least. ES is so ridiculously rare that there is simply not enough sample population to even give one confidence in the efficacy of available treatments as a cure anyway. For me, surgery has so far helped manage the disease but I have no clue if radiation has helped as well or not. I've had multiple recurrences but with rather long stretches of stability in between - no green juicing or prayers to the spaghetti monster involved at all. The issue many have had with the Jessica Ainscough story is that she publicly branded those months and years of stability as the direct result of her alternative treatments. This may very well be what she believed was the case but it demonstrated an extreme level of ignorance regarding the very nature of her disease and her fans apparently never read any medical journal articles regarding ES. Her story is tragic on so many levels but in the end that was her choice to make. By doing so she may have enjoyed more quality of life than she would have had otherwise. (Cancer treatments can be brutal). Who knows. Unfortunately, Jessica was – and hopefully unwittingly – selling quite a bit of snake oil. If you have cancer or any health issue it is important to learn as much as you can about the science of your disease and the efficacy of available treatments and seek second or more opinions. Beware of the sales(men) of Wooo BS and alternative "cures" who are always waiting to prey on people who are desperate for relief.

Thank you for your comment. I'm glad to hear you're doing pretty well, no woo necessary. It always helps to have a counter-anecdote to illustrate my point, because people by their very nature tend to believe anecdotal evidence.