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Fake Treatments for Fake Illnesses

I wrote previously on NeuroLogica blog about Morgellons disease. Both Peter Lipson and Wallace Sampson have also covered this interesting syndrome here on SBM. Briefly, sufferers of this dubious syndrome believe they have foreign material exuding from their skin, causing chronic itching and sores. The evidence suggests that in truth they suffer from something akin to delusional parasitosis – the false belief of foreign parasites in their skin, leading to chronic itching which causes the sores and also works clothing fibers into the skin, which are later exuded.

Morgellons, in short, is a fake disease, a false and somewhat far-fetched explanation for symptoms that have a much more prosaic, if undesired, explanation.

Those who believe they have Morgellons, however, are legitimately ill and are an extremely vulnerable population. They feel they have a serious and mysterious illness, and worse the medical profession does not understand their illness and so denies that it exists. This is a perfect setup for snake oil-peddling con-artists.

Colloidal Silver

Colloidal silver is a suspension of metallic silver in a colloidal base.  It has been around for a long time, and was used in limited indications for infections prior to the development of antibiotics. Use was phased out of scientific medicine decades ago because of lack of efficacy, because better options were available, but primarily because colloidal silver products have the potential to cause a serious side effect called argyria – deposition of silver salts in the skin and organs. This causes the skin to turn gray or bluish. In short, colloidal silver failed as a drug because it is toxic and ineffective.

However, colloidal silver is enjoying a second life as a “supplement.” Thanks to the Dietary Supplement Health and Education Act of 1994 (DSHEA) the FDA was able to only shut down sale of colloidal silver as a drug – meaning with claims that it cured or altered a specific disease, but could not prevent its sale as a supplement. Over the years the FDA has fined or sent strongly-worded letters to various companies selling colloidal silver as a supplement, but stepping over the line and making disease claims.

As a result of DSHEA, the public is no longer protected from this worthless and dangerous compound, rather the misguided or uncaring companies selling it are slightly inconvenienced in their marketing.

Two Cons in One

What if, however, a “supplement” (as legally defined by DSHEA) were marketed toward a fake disease? Would that violate FDA regulations?  It seems that some colloidal silver marketers hope the answer is no. NutraSilver is a company that is selling colloidal silver as a nutritional supplement, but specifically claiming that it treats Morgellons disease. Their website says:

Thousands of Morgellons victims have used NutraSilver to eliminate their brain fog, fatigue, depression and lesions in about 3 weeks.
NutraSilver, a scientifically engineered natural mineral,when taken as a nutritional supplement, kills the most severe pathogens known to mankind very quickly.

The product is also marketed through Morgellons-specific websites, like morgellonhope.com. There also seems to be a viral campaign underway, with individuals pushing NutraSilver on Morgellons message boards and blogs. One even infiltrated my own blog on Morgellons and left a comment that was obviously a sales pitch, complete with a link back to the NutraSilver website (which I deleted).

This may represent a new strategy – evading FDA regulations by marketing supplements towards fake diseases. We will see if it works. I have a complaint in to the FDA on NutraSilver and I will give follow up on what response, if any, I get.

NutraSilver is also being marketed toward Lyme disease and arthritis. In fact their website has a section called “disease applications.” So perhaps they are not savvy enough to evade the FDA. This would mean they are targeting Morgellons because they believe they have found a vulnerable population. The most cynical interpretation is that the marketers of NutraSilver believe that those who label themselves as having Morgellons are delusional and therefore easily manipulated with false hope.

Wilson’s Syndrome

There are many other examples of dubious therapies being aimed at equally dubious diseases.  Years ago I heard a radio ad for “Wilson’s Syndrome”, which was nothing more than a list of non-specific symptoms. Dr. Wilson seems to have just made up the syndrome, which he named after himself, so that he could lure the unsuspecting to his clinic. Over the years the “syndrome” has evolved into a mysterious hypothyroid syndrome, with the same list of non-specific symptoms (from fatigue to carpal tunnel syndrome), but also including occasional body temperature measured below 98.6. Dr. Wilson has published no research establishing his fake illness, which is, of course, not recognized by the medical establishment as having any legitimacy. The temperature claim is actually absurd – there is a normal range for body temperature – 98.6 being exactly normal is a fiction. But Wilson can convince the unsuspecting that they have a real syndrome by having them obsessively take their own temperature until they get a reading below the magic number.

Not surprisingly, clinics treating Wilson’s Syndrome also treat candida, chronic fatigue, and multiple environmental/chemical sensitivity – all dubious or highly overdiagnosed entities based upon non-specific symptoms.

Conclusion

Establishing that a set of signs and symptoms is a specific syndrome or disease is an extremely important function of scientific medicine. Recognizing that different people can suffer from the same pathophysiological disease in fact was the key insight that lead to modern scientific medicine. This is now also critical to medical research, and clinical trials often use very strict criteria for diagnosis the entity under study.

A further utility of having objective diseases, however, is regulation – especially when that regulation (like the current laws in the US) is based upon whether or not a claim can be made for a disease. The existence of fake or dubious diseases and syndromes has the potential (in addition to exploiting patients) to further frustrate efforts at objective and effective regulation in the health product marketplace.

Posted in: Herbs & Supplements, Science and Medicine

Leave a Comment (7) ↓

7 thoughts on “Fake Treatments for Fake Illnesses

  1. Recovering Cam User says:

    As someone who wasted tens of thousands of dollars on ineffective CAM treatments over the years, I admire the work that you and your colleagues do here to educate people about the importance of science-based medicine. This blog has been very helpful for me as I continue to disentangle myself from the web of CAM beliefs that held me captive for two decades.

    With regards to the topic of fake diseases, however, I feel compelled to point out that part of the reason I was so susceptible to diagnosis of fake diseases is because I had real symptoms that conventional medicine ignored because my tests were all “normal.” There are few things more frustrating as a patient than being told there is nothing wrong with you when you can barely function. While CAM practitioners ultimately failed to help me, they never denied that my condition was real. Ultimately, it was a CAM practitioner who referred me to an MD open-minded enough to acknowledge that, while technically in range, my labs were low enough to indicate borderline dysfunction that might benefit from treatment.

    My story is ultimately a happy one in that this treatment has literally turned my life around. Yet doctors like mine are apparently rare; every day I read anguished stories in web forums from patients in similar condition who can’t get their doctors to acknowledge that so-called normal lab ranges do not tell the whole story.

    You wrote that “establishing that a set of signs and symptoms is a specific syndrome or disease is an extremely important function of scientific medicine.” This seems reasonable, yet in my case, those criteria were far too rigid. Doctors who strictly followed those criteria and ignored my symptoms fed my belief that conventional medicine was useless and sent me straight into the waiting arms of sympathetic CAM practitioners.

    I would love to see more scientific research done on my condition that looks at why there is such a disconnect between “normal labs” and patient function. Unfortunately, since the drugs used to treat my condition are all cheap and off-patent, I don’t expect this will happen anytime soon. In the meantime, patients are using the Internet to share experience and information they can’t get from MD’s. Knowing what I do about the questionable value of anecdotes, I rely on these boards with some hesitation. But there is nothing like having a specialist ignore everything you say, imply it’s all in your head and suggest anti-depressants to make a person feel like they have few options.

    I really wish that my own medical condition was cut and dried enough that I could rely entirely on the principles of science-based medicine for its treatment. Unfortunately, that level of science does not exist for me and millions of other patients with genuine symptoms that fall through the cracks of conventional diagnosis. As long as patients with real problems continue to be told by their doctors that there is nothing wrong with them, CAM practitioners will continue to do a booming business with their fake diagnoses and ineffective treatments. Since there simply isn’t enough money to study every single thing that needs to be studied scientifically, I have no idea how to address this problem. Do you?

  2. Jules says:

    OMG, I’M DYING!

    a) I feel crawly sensations just under my skin, b) I scratch because they make me itch, AND c) I’m in the middle of a comparatively mild anxiety attack at this very moment. Oh, and it gets better–my body temperature is ALWAYS below 98.6; my baseline is around 96.8. :-D

    From what you describe, Morgellon’s = eczema. I actually do feel like there are little creepy crawlies running just under my skin, and scratching does, in fact, make it go away. I’m not nearly so deluded as to suppose that there are actual bugs, but someone who may not know better (or had a few too many lines) could believe they have bugs. And eczema is a bitch to treat. It’s a bitch to live with, too, but I’ll spare you the gorey details and merely say that cortisone creams don’t work forever and always having an itch you can’t scratch #$^^ @#$%^@%$^&^#.

  3. Prometheus says:

    How cunning of Dr. Wilson to come up with a “syndrome” that has the same eponym as a real disease (Wilson’s Disease). I wonder how much that has helped proliferate his pseudo-disease (and hurt his victims/patients) through a sort of Batesian mimicry of a real medical condition.

    I also wonder how many of the woo-afflicted would have been saved the trials and tribulations of “alternative” medicine if their real physician had found some “borderline” lab result and said something like:

    “That’s the problem! Your serum creatinine level is too low. You need to eat more lean red meat. Eat at least three steaks a week and come back next month and we’ll check it again.”

    Prometheus

  4. Fifi says:

    The veracity of Morgellan’s aside (and considering there are sores and “threads” to test I’m amazed this debate continues!), some caution needs to be taken before proclaiming a disease is psychosomatic or imaginary simply because it presents with diffuse symptoms. I’ve seen doctors dismiss drug side effects simply because the person reporting them had a dramatic personality. The reality is that women still do face having their symptoms minimized or not listened to, and ultimately dismissed as hysterical (with all that the etymology of that word implies). I’m not saying doctors and sCAMmers don’t make up fake diseases to profit (particularly ones with diffuse symptoms), or that they don’t target difficult to diagnose and treat syndromes which medicine is still not having much success treating. Nor am I saying that our culture doesn’t pathologize being moderately unhappy and paint that as being a “disease” (you know, ’cause life isn’t easy ;-) )

  5. fifi – you are absolutely right. I teach that to my students and residents all the time. Just because someone is dramatic, that does not mean they are not sick. So while our clinical impression may be – dramatic presentation of non-specific symptoms with normal exam. We still will do a reasonable workup – blood work, maybe an MRI scan (with neuro cases), or whatever is appropriate to the complaints. If, then, you have a non-specific syndrome, normal (or non-specific) exam, and a thorough negative workup, in a patient with a “dramatic” presentation it is reasonable to conclude that:
    1 – the syndrome is likely to be functional (as opposed to pathological)
    2 – the patient may be unlikely to benefit from further workup
    3 – the patient may be best served by focusing on improving symptoms and quality of life.

    I have seen patients harmed (in many ways) by pursuing the endless workup, or by being given fake diagnoses, or dubious diagnoses based upon mild abnormalities in the workup that are almost certainly incidental.

  6. David Gorski says:

    I also wonder how many of the woo-afflicted would have been saved the trials and tribulations of “alternative” medicine if their real physician had found some “borderline” lab result and said something like:

    “That’s the problem! Your serum creatinine level is too low. You need to eat more lean red meat. Eat at least three steaks a week and come back next month and we’ll check it again.”

    When I was a resident, on a handful of occasions I actually got telephone calls from the lab or from nurses telling me that the patient’s BUN was too low. One time when I was particularly cranky, I told them to give the patient 5 g of BUN.

  7. Gah. I… have been that patient with generalized fatigue and unexplainable-by-me sudden spells of weakness and lethargy. Unfortunately, at the time I didn’t have health insurance and didn’t want to spend the money getting a blood test. Of course the doctor I saw at the health clinic couldn’t diagnose my symptoms without a blood test, and being a healthy-looking mid-twenties person of normal-range weight, I’m sure I came off as a flaming hypochondriac. I cringe when I think back on it.

    An herbalist of my acquaintance had no such compunctions against offering a pulled-from-the-posterior diagnosis! She sold me some mineral supplements, which seemed to do the trick.

    What I had, it turned out, was hyponatremia. I found out later because my symptoms recurred every summer… because I was drinking too much water, thanks to some unscientific hydration beliefs I had at the time!!! I am really lucky to be alive. Wish I had gotten that blood test– it would have told me right off the bat what was wrong, and it didn’t really cost much more than the herbal mineral supplements!

    Er, anyway, I really do empathize with the Morgellons folks. I felt like the doc at the clinic was being horrid and dismissive of my suffering, and I loudly despaired of EVER finding a doctor in my city who cares if I live or die, blah blah. I could not lay all that on the doctor, though, I came to realize. I needed to take responsibility for my own role in my healthcare, i.e., cooperating with the doc when he made recommendations. Once I copped to that, wonder of wonders, I began to see medical professionals not as scammers who just wanted my appointment fee, but as people who really are in their jobs because they like to help people get better.

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