It's like this: science requires a tolerance of failure. If your shiny, happy hypothesis fails to stand up to rigorous scrutiny, you drop it and move on. If instead of a true, disposable hypothesis, you have a fixed belief that will not change based on the data, you are delusional. Boosters of alternative medicine prefer the term "maverick" to "lunatic" but in the two are often the same.
It is nearly impossible to get someone to abandon a belief in alternative medicine, no matter how strong the evidence against it. Study after study has failed to validate homeopathy as anything other than bullshit, yet it's strongest supports hang on hoping, perhaps, that someone will find out that we were wrong about physics and chemistry all along (you know, regional changes in physical constants and all that). Not all alternative medicine boosters are cynical thieves. Some really do believe that they are doing science, when in fact they are deceiving themselves about the meaning of data. When this type of thinking occurs in medicine, rather than leading to a paper retraction, it leads to quackery and sometimes death. Certain health conditions, because of their special characteristics, are more susceptible to this type of quackery than others.
Fibromyalgia is a poorly-understood and controversial pain syndrome. In brief, it includes patients who have significant chronic pain which is not due to any identifiable pathology. It probably includes a heterogeneous group of problems, but our understanding is limited. There may be changes in the way the nervous system deals with pain signals, but even this is not yet clear. It's a disorder that can be very frustrating to treat, and even more frustrating to have. It is often co-morbid with depression, and the pain can be quite resistant to treatment.
Some practitioners deal with this by rejecting the diagnosis as being vague and useless. Others use the limited evidence we have to develop a treatment plan. Yet others turn to quackery, the topic of a recent New York Times piece. The article is a brief presentation by an expert with Q&A in the comment section. He briefly describes fibromyalgia and talks about the difficulties in finding successful treatments:
One exciting area of research in the past decade has been in the realm of complementary and alternative medicine, or CAM, treatments for fibromyalgia. These range from well recognized therapies like acupuncture and massage to more novel treatments like d-ribose and qi-gong.
As this research grows, it is increasingly possible to identify CAM therapies that have some evidence of efficacy and minimal risk that can be incorporated right along with the more conventional treatment recommendations.
This would be great if there were such evidence. A recent article from Rheumatology International looked at randomized-controlled trials (RCTs) of alternative medicine for fibromyalgia. Most of the studies were of poor quality and had conflicting results. Some of the positive results are easy to misinterpret.
Let me set us all straight on one thing first. There is a difference between "cherry-picking" data in order to support a failing hypothesis, and critically evaluating data that has questionable conclusions. One is driven by faith, the other by critical thinking.
RCTs are a strong type of evidence, but that does not make them immune from criticism. In the review in Rheumatology International, the authors reported a single positive RCT for homeopathy. There are a number of ways to interpret this. One is to look at RCTs as de facto gold standard tests, independent of their quality. Another is to think.
RCTs are only as good as their design, conduct, and interpretation. There are flaws in each step that can lead one to erroneously keep ones hypothesis rather than reject it. In the case of alternative medicine treatments for fibromyalgia there are a number of ways to misinterpret data.
Plausibility
Dr. Harriet Hall would remind us of Tooth Fairy Science. We can measure all of the important data about the tooth fairy, including average get per tooth, average age of visitee, etc, but if we forget to question the fairy's existence, we have failed to ask the most important question. It may be true that an RCT showed improvement in fibromyalgia patients using homeopathy, but since homeopathy is water, there is no reason to expect causality, and the results may be better explained by some other phenomenon.
This is explained mathematically by Bayes' Theorem. If the prior probability of a positive result being due to the intervention is very low (say, because of implausibility), then any positive finding is very likely to be due to chance rather than causality.
Confounding natural variation with causation
Fibromyalgia is a syndrome whose symptoms naturally wax and wane. It can be very easy to confuse a change in disease state that occurs during a study with an actual effect. Rigorous controlling can minimize this but not prevent it. If, by chance alone, subjects in the treatment group had improvement in their disease due to its natural history, this will look statistically like a "win". This makes the study of such disorders difficult, and opens a big door for CAM, as it is easy to convince others to follow your misattribution of cause. This is similar to concepts such as lead-time bias and regression toward the mean.
Built into this is the common cognitive error of confirmation bias: if you are a believer in the intervention, you may be prone to attribute positive results to the intervention even if there is no causation.
Damned statistics and replicability
The statistical tools we use to interpret RCTs are designed to help us tell systematic variations in the data from chance alone. There are a number of arbitrary assumptions built into this system. For example, if results are described by a normal distribution, we may define "abnormal" as the highest and lowest 2.5% of results. If a single RCT shows statistically promising results (say, >2.5 SDs from the mean), then it's "positive"--but this still may be due to chance alone. A well-designed study can minimize the chance of this result being due to chance alone but cannot eliminate it. This is one of the reasons a single positive test for a less plausible hypothesis must be replicated before we get too excited.
The bottom line
Fibromyalgia is a complicated syndrome whose very nature makes it susceptible to the abuses of CAM practitioners. When evaluating a therapy for a complex disorder whose natural history is variable, we must very carefully parse out causation from correlation, recognize our own biases, and remember that a positive result of a randomized-controlled trial does not necessarily confirm a hypothesis. If an intervention has no plausible way or working, any positive results are likely a statistical artifact. Science isn't a contest to see who can crank out at least one positive study. It is a way of evaluating hypotheses to see which ones most closely fit reality. Science is hard work, but the results are worth it.
References
Baranowsky, J., Klose, P., Musial, F., Haeuser, W., Dobos, G., & Langhorst, J. (2009). Qualitative systemic review of randomized controlled trials on complementary and alternative medicine treatments in fibromyalgia Rheumatology International DOI: 10.1007/s00296-009-0977-5
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After years of false hope and being ripped off and humiliated, I am no longer interested in a cure. My "cure" is that I experience pain and that's that. It is much more painful to be played the fool, again.
Seriously, I found that I can manage the pain somewhat with lots of aerobic exercise and the rest I can just accept. I just get on with my life, it hurts, and that will have to do.
I'll renew interest in a treatment or cure only when double-blind studies come up with significant and repeatable results. And I bet a lot of people with fibromyalgia feel the same way.
I am posting here because the new URL for SBM doesn't work for me yet.
I was only able to see the abstract of the article, but what I find very interesting is that balneotherapy was the intervention that worked the best.
The bacteria I am working with are found in a number of hot springs (probably in essentially all of them), so it is not a surprise (to me) that balneotherapy would help fibromyalgia.
Like a previous poster, lots of aerobic exercise has been a huge factor, but I'm also in the beginning stages of RA, too. There is a CNS/autoimmune interchange that researchers overlook. Weekly massage and ultrasound therapy and low dose naltrexone (4.5mg) therapy give me so many more good days than bad.
FM patients just want to sleep and be out of relentless pain without loading up on medications with side effects and I've tried all the latest and greatest. I'm a 39 year old, active married mother of four with many years to live with this.
Three drugs (Cymbalta, Lyrica, and Savella) are FDA-approved for treating fibromyalgia, based, in each case, on replicated large prospective double-blind placebo controlled studies. Not one of the CAM therapies is supported by a trial remotely as well done as any of those. If you want to see good quality clinical trials, look to the pharmaceutical industry. NCCAM doesn't cut it.
disclaimer: I work for a pharma, but not one with any drugs for FMS either on the market or presently in development. In the past I ran trials in FMS for drugs that didn't work out - so my "expertise" is mainly marked by failures.
I think funding is part of the problem as to why there are not quality large-scale clinical trials for CAM studies in FM. Pharma funds such clinical trials because they have to in order to get their product approved by FDA, but there is little to no funding for testing effectiveness of CAM treatments. Little funding translates to smaller studies, poorer quality science and confusing results. On the other hand, even though some pharmaceutical clinical trials have shown some effectiveness of these new drugs in relieving FM symptoms, these results are far from iron-clad. In fact, many clinical trials are poorly designed and results misleading for many new pharmaceuticals that make it to the market.
SC (#5): it's easy to throw around statements such as "many clinical trials are poorly designed" but it might not be easy to back it up. Can you suggest any study design flaws in either the Cymbalta or Lyrica trials? Can you say how, specifically, the results are misleading?
as for funding, NCCAM has wasted far more money on crummy clinical trials than the (estimated) clinical development costs for Cymbalta.
(the full descriptions of the Savella trials aren't yet public, or I'd throw that in too).
repeat disclaimer: I work for a pharma, but have no involvement in any of the three drugs listed above and am not currently working on FMS drugs.
PalMD with yet ANOTHER attack against Homeopathy!!!
Oh, I see, this time its hidden in an "article" about Fibromyalgia.
OK.
It is nearly impossible to get someone to abandon a hatred of Homeopathy and alternative medicine, no matter how strong the evidence in favor of it. Study after study validates Homeopathy, for example even in the widely accepted Cochrane database, a study indicating a Homeopathic remedy succeeds in lessening the duration and severity of the flu. And its strongest support is understanding that it will be validated by physics and chemistry as researchers continue to investigate it. Here is what one scientist, a NOBEL PRIZE WINNING PHYSICIST named Brian Josephson, had to say in support of Homeopathy:
"criticisms centred around the vanishingly small number of solute molecules present in a solution after it has been repeatedly diluted are beside the point, since advocates of homeopathic remedies attribute their effects not to molecules present in the water, but to modifications of the water's structure."
"Simple-minded analysis may suggest that water, being a fluid, cannot have a structure of the kind that such a picture would demand. But cases such as that of liquid crystals, which while flowing like an ordinary fluid can maintain an ordered structure over macroscopic distances, show the limitations of such ways of thinking. There have not, to the best of my knowledge, been any refutations of homeopathy that remain valid after this particular point is taken into account." (quoted from Brian Josephson letter to the "New Scientist").
PalMD, perhaps you should drop Dr. Josephson a note that you are certain he's got it all wrong. I'm certain he'll be amused.
PalMD goes on to mention Dr. Hariett Hall and "tooth fairy science". The reader is directed to a typical "Skeptic" web site for her diatribe against Homeopathy appearing last January:
http://www.skeptic.com/eskeptic/09-01-14
Note her lack of understanding of what a Homeopathic proving is, the childish pouting about the high dilution with no mention of Ennis' experiments clearly showing biological effects are possible from such high dilutions and the characteristically condescending tone of the entire article as though the readers were children that need to be talked down to. And Hall even wants to help out those RN's who, she thinks, who don't even know what Homeopathy really is. Like PalMD, Hall is unable to free her mind from 1930's era ball and stick models of chemical molecules, and so feels compelled to attack something so "impossible" as Homepathy. Yes still crazy after all these years - as crazy as electricity, flying machines and trips to the moon. One wonders if PalMD and Dr. Hall have somehow been transported here from back to the mid 1800's and still are not quite able to keep up with all modern science has accomplished. Theirs is a simple little world where human bodies operate with the regularity of steam engines and with a little adjustment to a flywheel here, or a valve there, all will be made well again.
Keep the good work PalMD but try to consider, in one of your wild moments, that reality as you see it might not be the whole show!
Here is what one scientist, a NOBEL PRIZE WINNING PHYSICIST named Brian Josephson, had to say in support of Homeopathy
While I'm sure Dr. Josephson is quite smart and deserving of his Nobel, as you said, it is in physics, not biology or medicine. Quoting his opinion on medicine is a bit like quoting Pal on the cosmic microwave background or the Higgs boson. Just not the right field. His wiki page makes him sound like a bit of a nut too: he's into telepathy and cold fusion as well as homeopathy.
ah, the old "he's a nobel laureate" gambit.
appealing to the authority of a nobel laureate is a logical fallacy. while you could probably take Josephson's advice on superconductivity, you cannot necessarily take his advice on homeopathy. expertise in one field does not confer expertise in another field.
Josepson's quote above is not an endorsement of the efficacy of homeopathy. it is a statment that, as far as Josephson knows, there have been no successful attacks on homeopathy by disproving the structural changes in water. the existence of liquid cyrstals does not imply the existence of structural changes in water. it certainly does not imply homeopathy works.
homeopaths like to say that the succussion of water causes changes in water's structure. just what changes? how do they know there is a change unless they have measured it? if they have measured it, then where is the data showing the changes? how do these changes have a curative effect on a body?
until such data surfaces and is verified, homeopathy will remain pseudoscientific mumbo jumbo.
My objection to a diagnosis of fibromyalgia is that it is, as you say, likely caused by a variety of different things. It has also been an easy cop out in explaining why someone is experiencing pain (in the same sense that creationism is an easy cop out in explaining the diversity of life).
Patient: "Doctor, it hurts when I do this."
Doctor: "Well don't do that. Have you had this happen before?"
Patient: "Yes."
Doctor: "Well it's happening again."
This kind of thing would be funnier if it hadn't happened to two of my family members. My wife came very close to dying thanks to an incompetent doctor who told her that the kidney tumor the size of a bratwurst in her CAT scan was "A misshapen kidney, nothing to worry about, probably been that way your whole life." The tumor grew up her vena cava nearly to her heart until an actual doctor sent her to the Washington Hospital Center.
Closer to the point of this thread, my daughter was diagnosed with fibromyalgia when she had Lyme disease. By the time she was treated, considerable damage was already done.
BaldApe, I know someone with a similar situation to that of your daughter's. She has had a diagnosis of fibro (among other things) for a number of years, and only recently has she been found to have had (still have?) Lyme disease. The difficulty is trying to determine which of her symptoms are caused by what. Her case causes me sadness, in that she had been such an active person earlier in life, and now is often unable to leave her apartment at all. I don't blame her for wanting to try whatever she hears about (along with pain meds, etc.) - for instance, she has said that massage gave her great relief when nothing else would - but I worry about her using the small amount of money she has on quackery.
As for James Pannozzi, his post is one long string of fallacies. Let's see, we have appeal to authority, false analogy, ad hominem, the "study after study" fallacy (what's that called?), the "it will be validated [someday]" fallacy, the assumption of ignorance on the part of the opposition ("Her lack of understanding" meaning "you just don't get it"), and so on. Mr. Pannozzi, how about providing the *evidence of efficacy* you swear is out there, instead of just complaining about what other people have to say? Go on, prove them wrong. Make a claim about what homeopathy can treat, then show that it does. Go win Randi's $1,000,000. Show the world that our modern explanations of physics and chemistry are wrong.
Okay, Mr. Pannozzi, if you have actually read this, please accept my apologies for my strident tone and possible appearance of frustration. Let me politely ask you: what are the studies that show homeopathy's efficacy in treating some disease? I really do want to know. Thank you.
Aw heck, does James Pannozzi = Joseph Putnocki (who posted an ungrammatical rant re homeopathy on a different thread)? If so, well, dang, I fed a troll. I hope it enjoys the noms.
Excellent post, thank you. I have chronic fatigue syndrome (or CFS, ME/CFS, CFIDS, whatever you want to call it) and am personally familiar with the barrage of BS that people with chronic illness must put up with. Exactly as you say, we are "susceptible to the abuses of CAM practitioners"; I've written about it before and plan to keep hammering this nail.
Something we often talk about in our community is that if there were some incredible cure, the information would spread like wildfire. If homeopathy was truly allowing the bedbound to rise and resume our normal lives, we would be all over it, no question. Certainly some people have claimed the efficacy of various types of CAM in "curing" their illness, which could be attributed to the confirmation bias you mention, the placebo effect, coincidence, who knows. But it amounts to little more than anecdotal evidence at best (and even that may be pushing it).
I don't begrudge anyone feeling better. But I do strongly advocate for the chronically ill, especially those of us with "poorly-understood and controversial" problems, to remain skeptical despite our understandable desire to have our pain eased and to return to our lives.
No, James Pannozzi seems to equal James Pannozzi. Do a google search and you'll find the same dumbfuck posting on Bad Astronomy, as well as his LinkedIn profile. Certified moron.
PalMd did a Richard Dowkins with deriding homoepathy. While I respect Richard for excellent articles, books and documentaries, the last one I saw last year was uncharacteristically poor production as he put alternative medicine in the cross-hairs and homoeopathy in particular. And he was wrong. Both did not do their homework and both attacked it arrogantly. As if alternative medicine had monopoly on charlatans and deluded practitioners. As if allopathic practitioners were all dedicated, able, intelligent and caring. As if big pharma did not control medicine and even the FDA. As if allopathic medicine did not persecute the non orthodox modalities and try suppress their effectiveness.
Acupuncture works with a lot of patients. Much depends on the practitioner as the idea behind it is not understood nor seem right. Yet it works. The placebo effect is cited as explanation. The placebo effect by the way is an important healing tool, and part of serious medication's effectiveness too. The embarrassing thing is it works on animals as well. I haven't heard placebo effect on animals yet. Now homoeopathy: an obviously wider modality, there are homoeopathic hospitals and credible research buried under allopathic propaganda in the rubbish tip of of Big Pharma. We do not understand enough acupuncture yet. Nor do with homoeopathy. Some intelligent people cant comprehend and hostile to evidence it works. Even some geniuses baulked at some concept or new discovery or explanation. Even Einstein refused to accept quantum mechanics!
The arrogance of the attitude Richard displayed was everything must have a scientific verifiable explanation. What lays still in the realm of mystery to be understood later or at all is not accepted. Because the effect of astronomically diluted preparations assume no active initial molecule be present can not possibly work. Again the placebo effect is dragged out. Again evidence of animals responding and cured. This is embarrassing! So lets be careful, intelligent and not arrogant about things we criticise. The writer of the above article could do well look deeper, wider and without blinkers. Then his article would be high quality. This one is a bit of
Taurus Excretus.-
Thank you!
As someone who has lived with Fibromyalgia for over 20 years (and been disabled by it for over 10 years), I have seen so many frauds claim "miracle cures" that I have given up on ever seeing a REAL cure in my lifetime.
I'm happy just to be functional enough that I can use my computer - and that functionality has come from treatments that have been proven effective by good old-fashioned science, not by wishful thinking or fraudulent claims.
EVERY claimed cure for fibromyalgia that I have seen in the last 20 years has ultimately been proved to be either wishful thinking, fraud, or just plain errors in reporting. One would think that, with all the evidence available, the so-called "cures" would have achieved the status of bad jokes - but I guess the human power for self-delusion remains the most powerful force in the universe.
As I look back with nearly 60 years of hindsight, I've probably suffered from some form of fibromyalgia since I was a teenager.
It never occurred to me until I was in my 30s that it was abnormal to feel excruciating pain when undergoing a routine physical where a doctor would manipulate one's ankles and bang on one's knees with a hammer.
Though I love my extended family and enjoy family reunions, I have learned that I will experience horrible pain when I'm greeted with a firm grasp of the shoulders along with the sentiment that they are so glad to see me after all these years.
It hurts like hell and it's one reason I take Klonopin before attending a large gathering of relatives. It doesn't decrease the pain, but it decreases the chance I'll groan in pain.
I was first diagnosed with fibromyalgia in the early 90s. I've taken some form of antidepressant ever since. Sometimes I suffer very little. Sometimes I can't even lay in bed without pain, much less get up.
I have suffered through primary care physician who don't "believe" in fibromyalgia and think I'm just making shit up. And I've had others who think the symptoms are caused by something else and I've got lots of something else to suit them, including arthritis and a benign brain tumor.
But my biggest problem these days is getting to see a doctor, including my primary care physician. I have referrals to a gastroenterologist (no problem getting appts there) and to a neurologist (appointments available six months from now) and a psychiatrist (no appointments available within a 100 mile range as they are not taking new patients).
As of Friday, Sep 25, I've been waiting for a call-back about an appointment with my primary doc (and referral for an MRI) for 3 weeks.
Since I supposedly have the best insurance the government can offer (TriCare Prime) do you wonder why I worry about the government taking over all medical care?
It worries me a lot that I can not get an appointment in less than 6 months with a neurologist in a city that has numerous hospitals and a medical school. I can't imagine what people without these local amenities might have to go through.
And I can't imagine how any of the current health care reform bills might help this situation.
typo: no plausible way or working
It amazes me that there are doctors such as yourself who just toss out the word "quackery" with such abandon. There are thousands of studies being done which show the effectiveness of so-called alternative treatments. When the "germ" theory was proposed it was highly controversial. Now it is a mainstay of conventional medicine. To be skeptical is good. To demand evidence is good. You mask your closedmindedness through logical discourse which is so biased to be ridiculous.
@Michael Porter:
You know what they call alternative medicine that works? Medicine.
It seems to me that YOU are abusing fibromyalgia to write propaganda against CAM. You have done a fair amount of cherry-picking yourself. And I came to this realization through critical thinking.
I hate to admit it, but I am one of the docs you write about who dismiss the diagnosis of fibromyalgia as being so vague as to be utterly useless. Many people have been "diagnosed" by some CAM quack (can you say practising medicine without a license, hmm?), and many others are self-diagnosed.
This doesn't mean I dismiss these folks out of hand. I try to figure out what's contributing to the pain and what I can do. Some folks, including several of the above commenters, take things on board and use the little evidence available to get their lives back.
These folks do not deserve to be lumped into the same category as folks whe refuse to cooperate with any plan that does not involve opioids and benzodiazepines, who refuse to exercise, and who refuse to recognise a(n obvious to me) mood component.
Sometimes CAM is a relief for me, for it gives the patients for whom the disease label has become all-important another outlet, another person to whom they can spend hours enumerating every little pain. Fibromyalgia is a trying illness for the physician as well. I feel sad that there is little that I know I can do for so many.
Mr. Porter:
From the link in your handle to device ad "The TeslaWAV BioTransponder wraps you in a 10 foot sphere of protective, healing energy that blocks dangerous electromagnetic radiation.
It naturally removes stress and keeps positive, healing, and uplifting energy flowing to create radiant health!"
And pray tell how did you measure the area covered by the sphere of "healing energy." Is it a sphere with 10 foot height, width or something else. It seems to me the only one who tosses anything with abandon is you tossing out sham treatments designed to make you money off the gullible.
After interviewing hundreds of patients for the documentary, UNDER OUR SKIN, we found many people who have been labeled with Fibromyalgia actually had a treatable, undiagnosed case of Lyme disease. Make sure that you've been tested for Lyme disease from a reputable lab (Igenex, Clongen, MDL) before being labeled with an incurable symptom.
Politics have corrupted the definition of Fibromyalgia and Lyme disease. To learn more, see the trailer for the film, UNDER OUR SKIN: http://www.underourskin.com
For more on testing: http://www.underourskin.com/interact_help.html
Hey, PalMD, have you watched the film yet?
I was given a medical discharge from the military for "peripheral neuropathy" which, to me, is another disorder that basically states "we can't figure out why you are in pain". I recently found out that there was a nerve biopsy considered a difinitive test, so I had it done and it came back negative. Fibromyalgia is my current topic of research hoping to find an idea of something that makes sense with my multiple symptoms which no doctor has been willing to look at as possibly connected. I am realizing, though, that fibromyalgia is more of a discription than a diagnosis. Maybe I should look more into what diseases have been commonly misdiagnosed as this condition. Are there any suggestions other than Lyme disease? My pain is not as noticeable in the joints as it is in what seems to be my skin or just below, but I have already had doctors pointing the finger at fibromyalgia. I just feel as though it is a "cop out" like someone stated earlier, and it makes them feel better if I CAN'T be treated than if they just can't figure out how.
here are my views on alternative medicine. a long reply to your post too.
http://desifeminists.wordpress.com/2009/10/12/bias-racism-and-alternati…
red rabbit @22
As someone who has been diagnosed with Fibromyalgia (by my PCP and my Rheumatologist), I would find it very frustrating to have a doctor blow me off and point me toward CAM solutions. There *are* things that work to treat Fibromyalgia. There's a reason why there are approved treatments. They've been approved because they work.
I'm currently in the second month since I started treatment with Savella, with pretty darn good results. I've gone from pain levels of 6-7 to pain levels of 2-3. I'm completely off opioids (not that they were doing much good), and my energy level has increased. Instead of struggling to wash a load of dishes, I'm back to maintaining my house and trying to get my stamina back so I can possibly go back to work.
If my doctor had stopped searching for a diagnosis and shunted me off to alternative medicine, I'd still be sitting on my couch crying in pain. He ran every diagnostic test he could think of, then referred me to my rheumatologist. She ran more tests, and after eliminating everything else it could have been, diagnosed this as fibro. Now, I'm getting a treatment that works, and I'm getting my life back.
I'm glad you weren't my doctor, because then I'd still be where I was when this whole thing started... except out more money for treatments that you recommended that didn't work.
/rant