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Still more evidence that Morgellons disease is most likely delusional parasitosis

ResearchBlogging.orgOne of the stranger Internet-based quackery phenomena of the last decade is Morgellon’s disease. This is a topic I haven’t visited that much on this blog, its having last come up in a big way a little more than a year ago, when I discussed it in the context of Dr. Rolando Arafiles and the other quackery he was promoting. This led to extreme unhappiness on the part of self-proclaimed Morgellons disease “expert” Marc Neumann, who later bombarded me with threatening e-mail rants. In any case, whatever Morgellons disease is, its cause is almost certainly not what patients think it is, namely the presence of tiny organisms in the skin leading to a chronic itch that leads to chronic scratching. Its adherents describe it thusly:

Morgellons is a multi-symptom disease that is just now starting to be researched and understood. It has a number primary symptoms:

Physical

  • Sponanteously Erupting Skin lesions
  • Sensation of crawling, biting on and under the skin
  • Appearance of blue, black or red fibers and granules beneath and/or extruding from the skin
  • Fatigue

Mental

  • Short-term memory loss
  • Attention Deficit, Bipolar or Obsessive-Compulsive disorders
  • Impaired thought processing (brain fog)
  • Depression and feelings of isolation

It is frequently misdiagnosed as Delusional Parasitosis or an Obsessive Picking Disorder.

Except that delusional parasitosis is probably not a misdiagnosis. The “fibers” or “granules” found in the skin virtually always turn out to be consistent with fibers from clothing or other sources. At least, no advocate of Morgellons disease has ever demonstrated them to be anything mysterious. This concept has led to treatments for Morgellons that resemble those of chronic Lyme disease, namely chronic antibiotic use. Indeed, interestingly, Morgellons advocates frequently link Lyme disease to Morgellons, with some even asking whether Morgellons disease is the “Lyme disease of our time.”

I was reminded of this frustrating (for both patient and physician) phenomenon by a couple of things recently. First, Mark Crislip wrote an excellent discussion of Morgellons disease and delusional parasitosis (which, of course, appear to be basically the more or less the same thing). The second was the publication of a study in the Archives of Dermatology by a group from the Mayo Clinic entitled Delusional Infestation, Including Delusions of Parasitosis: Results of Histologic Examination of Skin Biopsy and Patient-Provided Skin Specimens. Basically, what investigators Hylwa et al did was something very obvious. They retrospectively reviewed the pathology results of patient-provided specimens and physician-ordered skin biopsies in patients with Morgellons and diagnoses akin to Morgellons. Their search strategy was as follows:

A computerized search of patients seen at Mayo Clinic’s site in Rochester, from 1996 through 2007, was performed using the following search terms: delusion of lice, delusional disorder with parasitosis, delusion(s) of parasitosis, delusional parasitosis, delusion(s) of parasitism, delusion(s) of parasites, parasitosis (delusional), delusional infestation, delusory parasitosis, psychogenic parasitosis, neurogenic parasitosis, neurotic parasitosis, Ekbom syndrome, formication and parasites, chronic tactile hallucination(s), dermatophobia, parasitophobia, toxic psychosis, tactile psychosis, monosymptomatic hypochondriacal psychosis, Morgellon(s), psychogenic dermatitis, neurotic dermatitis, neurogenic dermatitis, self-induced excoriations, and psychogenic excoriations.

From this, the authors chose cases thusly:

All patients who were seen at Mayo Clinic and whose final assessment was consistent with the criteria for diagnosis of delusional skin infestation as described by Freudenmann and Lepping12 were identified as having the disorder and were evaluated for inclusion in this study. The 2 inclusion criteria were (1) the patient’s conviction that he or she was being infested by pathogens (animate [eg, insects or worms] or inanimate [eg, fibers]) without any medical or microbiological evidence for this, ranging from overvalued ideas to a fixed, unshakable belief; and (2) the patient’s complaint of abnormal sensations in the skin explained by the first criterion. When a diagnosis was uncertain, the case was discussed between the reviewers and a final decision to include or exclude the patient was agreed between them.

The general term delusional infestation was chosen because it embraces the 2 main categories in which patients present: delusions that they are infested with animate material (such as parasites) and delusions that they are infested with inanimate material (such as fibers).

So what were the results?

Basically, out of the 80 cases of patients who underwent skin biopsy, Hylwa et al found not a single patient had objective evidence of parasite infestation on skin biopsy, although 61% did reveal dermatitis, including 33 cases of chronic dermatitis, 10 cases of subacute, and 6 cases of lichen simplex chronicus. This last diagnosis is a thickening of the skin with scaling that arises secondary to repetitive rubbing or scratching. In actuality, I’m rather surprised that only 60% of biopsies showed this result; I would have expected it to be higher. I am not surprised that the skin biopsies were in essence nondiagnostic. A number of patients had skin cultures. These, too, were all nondiagnostic, being either negative or yielding common contaminating organisms that couldn’t possibly account for the patients’ symptoms.

Also not unexpected are the results of examinations of patient-provided specimens. These were examined by dermatologists, pathologists, tropical medicine specialists, internal medicine doctors, psychiatry, or infectious disease physicians like Dr. Crislip. Most commonly, they were found to be skin flakes or serum crust, hair, or textile fibers. There were a couple of insects found among the specimens. One of them was interesting in that it was an actual parasite, specifically a pubic louse, but physical examination showed no evidence of infestation. Another patient brought in a tick, but the clinical judgment of the practitioners was that the tick could not account for the patient’s symptoms. The bottom line is that none of the patient-provided specimens resulted in any useful information other than that the patient did not have parasites. Consistent with the scientific literature on Morgellons disease, they were nothing consistent with a diagnosis of parasite infestation.

The authors point out that this is to the best of their knowledge the first study that addressed the histological analysis of skin biopsies and patient-provided specimens in a relatively large number of patients. They also note, as you would expect, that this is a retrospective study, and thus prone to all the shortcomings of retrospective studies, including the potential for incomplete information and bias. One aspect that the investigators mention that isn’t really a bug (if you’ll excuse the term) but a feature is that the patients had “disparate characteristics, with an array of presentations.” That’s pretty much the definition of Morgellons; it consists of an array of nonspecific symptoms that focus around the belief that something has infested the skin, be it parasites or some sort of inanimate contaminants, and disparate presentations would be expected. Be that as it may, the authors ended up concluding that examination of patient-provided specimens and skin biopsies showed no evidence of infestation, although they did frequently show evidence of dermatitis. Unfortunately, this is a nonspecific finding; it’s also difficult to figure out whether the dermatitis is a cause of the sensation of infestation or occurs as a result of it and the scratching and rubbing that such patients engage in. Indeed, the authors ask:

The results of this study raise many questions concerning the value of skin biopsies in the context of a patient pre- senting with delusional infestation. Given that a skin biopsy and histologic examination of specimens brought by patients do not yield evidence of infesting materials, either animate or inanimate, should a biopsy be performed? Some have proposed that an alliance with a patient is a justification for a skin biopsy, but is it? What is the outcome fol- lowing a biopsy? Did it improve the outcome of the inter- action with the patient? Were patients more likely to be compliant with therapy following a biopsy? These questions remain unanswered by this study, which concentrated on the results of skin biopsies in this situation.

It’s a difficult set of questions. This study would suggest that the diagnostic yield of doing such biopsies is incredibly low. So, what reason is there to do a skin biopsy in cases like this? If this study is to be believed, the answer is: None.

Overall, this study also provides still more evidence, as if any were needed, that patients with the constellation of symptoms consistent with Morgellons disease and/or delusional parasitosis (which appear to be more or less the same thing) rarely, if ever, have any specific findings consistent with real parasitic infestations of the skin, their belief that they are somehow infested notwithstanding. Many of them have some form of dermatitis, but it is not clear whether it is the primary explanation for their symptoms or occurs as a result of the scratching that these patients engage in. Whatever the case, I have no doubt that these patients are suffering, but the explanations proffered by advocates of Morgellons as the cause of their symptoms. Unfortunately, this study is highly unlikely to change the minds of patient advocacy groups promoting Morgellons disease as an entity, just as numerous studies failing to support the idea of chronic Lyme disease have failed to convince patient advocacy groups that chronic antibiotic therapy for the constellation of symptoms attributed to chronic Lyme disease is not a good idea. It should also be noted that delusional parasitosis existed as a distinct diagnosis before Morgellons disease, which has only come to the fore over the last decade or so.

One thing that is sure. The promotion of Morgellons disease as a distinct disease, primarily by means of Internet-fueled advocacy and old-fashioned conspiracy mongering. What these patients need is the application of science and science-based medicine to their problem, not the various quack nostrums sold to them by practitioners who are either unscrupulous or themselves share the delusion. This study adds to our knowledge by providing yet more evidence that there is rarely, if ever, a documented parasitic infestation in these patients.

REFERENCE:

Hylwa, S., Bury, J., Davis, M., Pittelkow, M., & Bostwick, J. (2011). Delusional Infestation, Including Delusions of Parasitosis: Results of Histologic Examination of Skin Biopsy and Patient-Provided Skin Specimens Archives of Dermatology DOI: 10.1001/archdermatol.2011.114

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

317 replies on “Still more evidence that Morgellons disease is most likely delusional parasitosis”

I enjoyed this review very much, having read Dr Crislip’s post with interest when it was created. It’s a difficult thing to tell a patient that there is nothing ‘physically’ wrong with them when they are certain there IS something wrong.

One question…you have an incomplete sentence (bolded below) and I’m not certain what you meant to say to complete it.

Overall, this study also provides still more evidence, as if any were needed, that patients with the constellation of symptoms consistent with Morgellons disease and/or delusional parasitosis (which appear to be more or less the same thing) rarely, if ever, have any specific findings consistent with real parasitic infestations of the skin, their belief that they are somehow infested notwithstanding. Many of them have some form of dermatitis, but it is not clear whether it is the primary explanation for their symptoms or occurs as a result of the scratching that these patients engage in. Whatever the case, I have no doubt that these patients are suffering, but the explanations proffered by advocates of Morgellons as the cause of their symptoms.

MI Dawn

What do you make of this article from the Guardian a few weeks back, which argues that it’s a neurological disorder that leads to itchiness of skin patches, not a psychological disorder of thinking that there’s stuff on your skin when there isn’t? The hypothesis here is that while the itchiness is real, whatever the patient erroneously thinks is causing it isn’t, and that’s why tests to find these phantom bugs/fibers/whatever always come up false.

http://www.guardian.co.uk/lifeandstyle/2011/may/07/morgellons-mysterious-illness

Of course, even if this were true it would put Morgellon’s disease in the same category as fibromyalgia, a penumbra of disorders which are difficult to distinguish from hysteria.

It does seem likely that there are a number of different skin, itch, neurological or psychological conditions which could lead to patients having these symptoms.

I think that the tendency for some doctors to lump all these patients together as suffering from ‘delusional parasitosis’ is likely to be the most significant factor in leading patients to give up on mainstream medicine and turn to google instead.

That Guardian article has, amongst much else, this paragraph:

“I contact Dr Anne Louise Oaklander, associate professor at Harvard Medical School and perhaps the only neurologist in the world to specialise in itch. I email her describing morgellons, pointing out it’s probably some form of DOP. But when we speak, she knows all about morgellons already. “In my experience, morgellons patients are doing the best they can to make sense of symptoms that are real. They’re suffering from a chronic itch disorder that’s undiagnosed. They have been maltreated by the medical establishment. And you are welcome to quote me on that,” she adds.”

Once patients have been mistreated by the medical establishment, it’s not at all surprising that many of them will be drawn towards quackery instead. I think that the priority should be stopping this cycle before it begins by ensuring that doctors realise it is wrong to provide misleading reassurances, or presume psychological illness based only on the absence of a known physical mechanism for illness.

Ola,

Si les médecins ne peuvent croire leurs patients pourquoi ne tiennent ils pas compte des témoignages de leurs entourages.
Les conjoints , les parents, les enfants, les amis cela fait du monde…
perso, je suis convaincu que le morgellon est une maladie bien réelle. Pendant plus de 7 ans ,j’ai pû constater, voir et toucher, toutes ces “choses” qui sortaient de la peau de mon épouse.
D’autres personnes aussi on pû voir cela. Mon épouse est actuellement hospitalisée en psychiatrie. Son état mental était devenu ingérable. Elle est soignée aux neuroleptiques pour de la parasitophobie. Du morgellon, les médecins rencontrés n’ont rien voulu savoir. Aucune suite à mes informations et à mes demandes d’observations.
Pöur croire au morgellon il faut un esprit ouvert et/ou des connaissances liées au développement des sciences tels les nanosciences .
Mon histoire avec le morgellon est dramatique,comme chez tous ceux qui en souffrent. Je témoigne dans un blog : le blog d’Alfalfa. Là, mon histoire est aussi spirituelle.

My question would be, why are people coming down with a chronic itch disorder now, in great numbers that coincide so greatly with the rise in prevalence of the ‘Morgellons disease’ meme? It seems to me that in order for Morgellons to be an artifact of diagnostic substitution, there has to be something to substitute for; we should be able to find people, in numbers comparable to those who are claiming Morgellons now, who were claiming heavy itches then. But I’ve never seen any indication of such.

I realize that Oaklander is an expert in her field, and I am not even an expert in a directly related field. Still, though, without a lot more supporting evidence and explanation, I can’t feel really confident in her opinion that there must actually be a physical disorder underlying the rise of Morgellons, not when we know how thoroughly a mind which believes the body is suffering illness can generate dramatic symptoms to match what they believe the illness entails (Desiree Jennings, anyone?)

@Anonymous

That article is a great illustration of the problem. People are looking for a physical diagnosis because of the stigma associated with psychological disorders. If one is absolutely convinced that there are creepy crawlies under the skin this doesn’t mean that person is “crazy”. Patients can’t keep an open mind to the possibility of a psychological mechanism if they think it makes them “crazy”, they will just be all the more determined there must be a physiological reason.

If this is “crazy” then so is the placebo effect. They are both a reaction to something perceived to be there, but in reality is not.

This Hamilton Nolan is wrong to label people this way, it only compounds the problem.

I think it’s telling that Dr. Oaklander’s “evidence” for her claim was those three fatal words “in my experience.” Just not at all compelling whatever her expertise.

So what it comes down to is that the evidence of “mistreatment by the medical establishment” is a single person’s non-quantitative uncontrolled observation. Which simply is not sufficient to draw such a conclusion.

@Beamup

But, but, but. She’s from Harvard! That means she must know what she’s talking about. I mean, it’s not like they would have professors spouting nonsense like, I dunno, that UFO abductions are real.

Kristen, HamNo writes in heavy snark. It’s the Gawker way. I don’t think he’s literally calling people crazy, just using hyperbole for comic effect.

Dr Oaklander was just commenting to a journalist for an article, not publishing a paper. What evidence did you want her to provide? Equally, the ‘in my experience’ is an important proviso because, given her speciality, it’s likely that the patients with a Morgellons diagnosis she came in to contact with would be particularly likely to suffer from some sort of neurological ‘itch’ problem.

I don’t think anyone was writing on the presumption that her claims must be true for all Morgellons patients because she’s a professor at Harvard.

It’s difficult to get conclusive evidence that there has been a widespread problem with the mistreatment of Morgellons patients. It’s difficult to get conclusive evidence that there has not been. Assessing how groups of people may be adversely affected by profiling or prejudices within institutions as diverse and complicated as those of mainstream medicine will always be difficult. However it does seem that there are some doctors willing to jump to a presumption of psychological illness based only on the absence of identified biological causes for symptoms, which may not be appropriate, and is likely to lead to some patients feeling mistreated and giving up on mainstream medicine.

In one of Orac’s recent threads which he described as a “tribute” to me personally he described my request for evidence to support what he claims to be proven science as “nonsense”

Evidence is a basic requirement of science. Only religions rely on faith.

He has continued to refuse to even attempt to produce any evidence for his claims of catastrophic global warming and the linear no threshold theory (LNT) of radiation.

And indeed no other contributor or reader of this blog has been able to produce any good evidence of either either.

Clearly nobody could ever try to justify what they know to be religious assertions by wrapping themselvesin the stolen mantle of “science” if they had any actual respect for it.

As of now the warming alarmists have accepted that in scaring the populace into paying vast amounts of money to fight catastrophic global warming the warming alarmists have been lying. None of the alarmists are now claiming any warming catastrophe claims they have supported to be credible.

The radiation alarmists have been reduced to trying to downplay the large amount of evidence for hormesis, that at low levels radiation is good for you) rather than actually trying to produce evidence for the politically approved scare. Even if that were true it would only mean Ms Coulter’s position was not much more scientific than Orac’s.

I had previously asked Orac to apologise to Ann Coulter, the target of his LNT tirade for saying she was “against physics” when the alleged physics in question is simply politics without evidential support.

I now think he should also apologise to me for describing, against all the evidence, what I wrote and the 7 questions about alleged catastrophic warming as “nonsense” and encouraging numerous ad hominem attacks on me in his thread “tributing” me.

Orac I suggest that being willing to admit being wrong is a major and necessary step towards being right. Make the admissions and apologies.

I will leave the last word to Orac on yet another thread “it’s easier to lampoon a person than it is to address the science”. Said in defence of Al “smoking is a major cause of global warming/ 2 miles down the Earth’s core is millions of degrees” Gore who he says “usually got the science mostly right”. Clearly Coulter & indeed I have attained a considerably higher standard of scientific accuracy.

Kristen – the simultaneous denial of somatisation disorder and rejection of psychiatric and psychological illness as ‘real’ is something the morgies have in common with the cfs/me/fibro brigade. What they don’t seem to realise is that this internalised ableism is only furthering stigma around mental illness, and also potentially hindering their own progress toward recovery.

Someone on reddit was insisting that his parents had morgellons and cfs, that they had ‘real’ problems, and would not even consider trying any treatment that was aimed at helping their minds, because “They’re not crazy”. Well… apart from the whole folie a deux thing, ahem. They’re still convinced it’s bloody XMRV, and that Big Pharma is suppressing the ‘real’ information.

I’d better go, the morgies will be here soon screaming about “TEH SPRINGTAILS!” and nanobots. Just like their cfs/me/fibro cohorts their primary symptom seems to be ranting on blogs in block text, without ever using paragraph breaks, about how it’s all a conspiracy and only they know the truth. Sadly, lack of paragraph breaks is what causes my uncontrollable itching and twitching, so I’d better go and medicate myself before they arrive.

“Delusion” and “hallucination” are scary words. It’s not just that mental illness is stigmatized: we want to be able to trust our senses.

I once had a friend ask me whether I saw insects in their kitchen, because that person knew they were sometimes having visual hallucinations (as part of a constellation of neurological issues including migraine). They weren’t exactly delighted to know that they really did have ladybugs in there, but they wanted to know.

A lot of other people would have dismissed the idea “those insects are a hallucination” because the idea of hallucinations is scarier than the idea of ladybugs.

weemaels — my French is rusty, but you seem to have a history of Morgellons and you are calling for doctors to be more open-minded about the possibility that it’s real.

Ten years ago, before Morgellons was fashionable, people were saying aliens were implanting fibers under their skin, and various forms of “delusional parasitosis” are not new — the diagnosis has been around for a very long time, it just hasn’t had a common focus until now. I also think it’s worth exploring Oakland’s suggestion that there could be an itch disorder behind some of these cases.

OT ( but are taunts by the woo-entranced *ever* _truly_ OT @ RI?)

Today at AoA ( a/k/a the School for Scandal): JB has a go at our fearless ( and peerless) leader. It appears that he is not exactly thrilled with Orac’s many references to AoA’s belief system and what they laughingly call “science”.Rich.

Another taunt which I myself have had hurled at me : “childless” people shouldn’t talk. How could you possibly understand children’s medical ( or psychological) problems if you ain’t got any? I think that this contains another disguised inference: there is something *wrong* with people who have no children ( gay? physical problems? too vain or immersed in career?) I’m sure that any of these factors would be then cancelling out logic and education. Sure. BTW: None of your business, Mr!

Even more unforgivingly, he goes on to critique *style*: as if he had any idea about what style involves.I have read ( and wept) over AoA posts many times and it wasn’t about the *truly* sad stories but about the manner in which they were purveyed.

I could go on and on about his criticisms of Orac’s science but I think that most of you have the general gist by now. I am so glad I never got the hang of writing fiction because I find that the real world throws forth such awe-inspiringly fanciful stuff my way I could scream with delight! And I want to share!

Dr Oaklander was just commenting to a journalist for an article, not publishing a paper. What evidence did you want her to provide?

In order to be taken seriously, she would have had to tell the reporter “according to my recent research published in journal X.” If she doesn’t have enough evidence to publish a paper, she has no business making such claims in an interview either.

Beamup, I disagree. Dr Oaklander’s comments need not be referred back to a paper.

What is she saying? That people have real symptoms of itchy skin? That many hundreds of people report itchy skin and have scratched themselves until they are covered with sores and scars is not disputed. What additional evidence would be necessary to “prove” symptoms of itchy skin? Such patients don’t have delusions of itchy skin, they have real itchy skin, the cause of that itchy skin happens to not be parasite infestation of the skin. No doctor has been able to diagnose what the cause of the itchy skin is. Calling the itchy skin a “delusion” is not helping.

I think that calling this condition Delusion of Parasitosis is analogous to calling phantom limb pain “delusional limb pain”. Technically phantom limb pain is a delusion because there is no limb present to exhibit pain and everyone (doctor and patient) knows that there is no limb present. Fortunately for people with phantom limb pain, there is sufficient understanding to know that even though the limb is absent, the nerves that carry signals of pain to the brain are still present and can trigger signals interpreted as pain in a limb that is no longer there.

All signals in the nervous system are subject to automatic gain control. That is the only way that the nervous system can remain functional over many years, through growth, in disease and in health. If the “gain” got turned up too high in the itch tranducing nerves, the symptoms would be an itch with no apparent “cause”, which would provoke scratching and eventually sores and lesions exactly as are observed in Morgellons.

I think the itching of cocaine abuse and of the disorder some call Morgellons have the same physiological basis. I mention that in my blog post. I think calling it a hallucination rather than delusional is more appropriate in both cases. I think the itching is very similar to the itching of primary biliary cirrhosis and of end stage kidney failure and relates to low nitric oxide in the skin, which potentiates mast cell degranulation. If mast cell degranulation is potentiated enough, then it can occur spontaneously and propagate as the products of mast cell degranulation trigger adjacent mast cells to degranulate, setting up a traveling wave of mast cell degranulation. I have blogged about it.

http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory.html

If the problem is automatic gain control in the peripheral nervous system, calling it a delusion is not correct. A better term would be Hallucination of Parasitosis.

Neil Craig you stupid shit, this threat isn’t about you and your paranoid persecution fantasies and your insane position that people who care about the environment are literally nazis. Fuck off and stay in the thread devoted to you.

Fascinating stuff. I always enjoy the research entries the most here on scienceblogs.

Also, allow me to paraphrase Neil Craig for those who don’t want to read his entire post: “Waaaaaaaaaah!!!”

Wow daedalus, that was quick. Google alerts are amazing things. You might want to vary the routine a bit, it’s getting stale. Nothing worse than copypasta for every meal.

Oh and it’s not the itching that’s ‘delusional’, it’s the belief that aliens/chemtrails/gmo/springtails/nanobots are causing the itch.

She’s not saying that people have itchy skin. She’s saying that they are being “maltreated by the medical establishment.” Absolutely requires real published evidence, since she’s claiming that most/all other doctors are wrong and she’s the one who has correctly figured out what’s going on.

Part of the problem is that the American medical system just isn’t very good at dealing with things like this. There’s not a lot of incentive for doctors to work with patients to explore low probability diagnoses, nor do many patients have insurance that allows them to pursue appropriate specialized care. You’re left with patients who are clearly experiencing distress, whether due to an actual physical symptom or simply due to a psychological issue masquerading as one, and doctors who have a limited ability to provide any relief. A vaccuum like this is a red carpet to the woo-peddlers.

Neil, Coulter’s article is full of idiotic inaccuracies. How can you continue to defend such a terrible piece of journalism?

Coulter claims of Chernobyl that, “the thyroid cancers in people who lived near the reactor were attributed to low iodine in the Russian diet — and consequently had no effect on the cancer rate”. Iodine deficiency does not cause thyroid cancer, though iodine supplementation can protect against it, and even the IAEA acknowledges that Chernobyl has caused thousands of cases of thyroid cancer. “There have been at least 1800 documented cases of thyroid cancer children who were between 0 and 14 years of age when the accident occurred, which is far higher than normal.”

Coulter also claimed that, “tuberculosis patients subjected to multiple chest X-rays had much lower rates of breast cancer than the general population” which is simply wrong. They had higher rates of breast cancer than the general population, just not as high as predicted.

Victims of the Taiwanese cobalt-60 incident had, “a cancer rate 96 percent lower than the general population”? Coulter claims that the 96% lower rate looked at “the same age group”, but the original paper says, “the age distribution of the exposed population has not yet been determined, and it was assumed that the age distribution of the exposed population is the same as that of the general Taiwan population”. In a more recent study “cancer risks were compared with those populations with the same temporal and geographic characteristics in Taiwan by standardized incidence ratios (SIR), adjusted for age and gender”. No sign of hormesis was found, in fact “all solid cancers combined were shown to exhibit significant exposure-dependent increased risks in individuals with the initial exposure before the age of 30, but not beyond this age”.

Coulter’s other claims are contradicted by better or more recent evidence which suggests the LNT is correct. These studies of Hiroshima, nuclear workers and the effects of radon argue against Coulter’s claims. The National Academy of Sciences agrees.

There is not a “large amount of evidence for hormesis”. There is a lot of evidence for a linear dose response relationship at high doses, and conflicting evidence at low doses. It seems to me that as more evidence becomes available, the more convincing the LNT becomes. It is not for scientists to prove the LNT, it is for proponents of threshold or hormesis to prove their case. If regulations were relaxed and the LNT is correct, the consequences could be thousands of excess cancers and deaths.

@patchup: “Oh and it’s not the itching that’s ‘delusional’, it’s the belief that aliens/chemtrails/gmo/springtails/nanobots are causing the itch. ”

So if a doctor were to wrongly diagnose a neurological itch problem as a delusional somatisation disorder resulting from emotional problems, should the doctor be classed as deluded and psychologically ill? People can be mistaken without being deluded, and psychological diagnoses can be applied on the bases of social power structures, rather than objectively identified distortions of thought.

Beamup, in her defense, she didn’t write the Guardian article, and it’s quite likely that the author did not quote every single word she said during the interview, as that wasn’t the point of his article. (It’s an article about DOP in which he quotes a neurologist, not an interview of said neurologist.) It’s possible she actually did cite such research but it didn’t make it into the article. I think we may be criticizing her without sufficient basis to know whether she’s engaged in pseudoscience or not. The point of quoting her in the article is, I believe, simply to point out that there may be a real sensory disorder at work which few doctors are considering, and that’s a fair point I think. “You’re not really infested; here’s a prescription for anti-anxiety meds and please see a shrink” may not be the right answer in a lot of cases.

The new disease de Jour; so reminiscent of “chronic” Lyme disease and the alleged conspiracy between insurance companies (which didn’t want to pay for prolonged IV treatment), researchers and public health officials. Fortunately, some of those LLMDs (Lyme Literate Medical Doctors) who are the equivalent of DAN! doctors, have been sanctioned-medical licenses revoked and criminally prosecuted for the deaths of patients. Unfortunately, “chronic” Lyme disease sufferers still persist and LLMDs are still preying upon their patients.

We used to get telephone inquiries at the health department where I worked from germ phobic/skin crawling people. Some of them were “frequent fliers”…dependable for weekly phone calls to the health department. Occasionally, people would call who actually had scabies infestation on their hands. And then, there were the phone calls from people who experienced pruritis after (ahem) “short stays” at the local hot pillow motel.

Some people just need to have the latest disorder/disease de Jour…sad.

Beamup, what she said:

“In my experience, morgellons patients are doing the best they can to make sense of symptoms that are real. They’re suffering from a chronic itch disorder that’s undiagnosed. They have been maltreated by the medical establishment. And you are welcome to quote me on that,” she adds.”

She is saying that patients have an undiagnosed chronic itch disorder; in other words, itchy skin that doctors can’t diagnose. If there is a disorder than can’t be diagnosed, calling the patient’s symptoms delusional is not helping.

There are cause and effect problems here. The first problem is itchy skin. The second problem is that doctors can’t diagnose what is causing the itchy skin. The third problem is that chronic itchy skin causes people to scratch and dig at their skin until they have lesions. The fourth problem is that doctors can’t treat what ever is causing the itchy skin. The fifth problem is that the chronic scratching causes the lesions to form scars. The sixth problem is that doctors can’t do anything to stop the itching. The seventh problem is that people who have been itching for so long get really desperate for some way to stop the itching. The eighth problem is that doctors get frustrated at being unable to help desperate patients so they throw up their hands and call it delusion of parasitosis. The ninth problem is that the itching is still there and no amount of cognitive effort on the part of the patients can make it go away. The tenth problem is that people hear the diagnosis of DoP and think “crazy patient”.

The problem with the tenth problem is that the part of the nervous system that instantiates itching has very little to do with the part of the nervous system that regulates rationality. One can be completely rational and still have severe itching. Itching is supposed to be difficult to ignore. That is the whole point of the urge to scratch. Evolution configured itching to be difficult to ignore because our ancestors who couldn’t ignore itching survived better because they had fewer skin parasites than our non-ancestors who didn’t have such a strong itch instinct and so succumbed to skin parasites.

@ Callie:

Unless she was actively misquoted, what’s there is pretty damning IMO. I can’t conceive of anything which could be said around that to make it reasonable. That is NOT the sort of thing that can fit with any sort of discussion of uncertainties or maybe more research is needed.

I realize that Oaklander is an expert in her field, and I am not even an expert in a directly related field. Still, though, without a lot more supporting evidence and explanation, I can’t feel really confident in her opinion that there must actually be a physical disorder underlying the rise of Morgellons, not when we know how thoroughly a mind which believes the body is suffering illness can generate dramatic symptoms to match what they believe the illness entails (Desiree Jennings, anyone?)

If one accepts that the mind is a function of the physical brain, then it follows that there must be a physical neurological basis for all psychiatric disorders. And delusional parasitosis sometimes responds to physical intervention medications–they just aren’t the medications used to treat parasites, but rather the ones used to treat psychiatric disorders.

still not itchy:

You seem to have some misunderstandings about the word ‘delusion’. A delusion, when it is severe enough to impair some funciton of daily life, can be indicitive of a psychological illness, but anyone who has any delusion is not automatically psychologically ill. It seems to me (at least according to dictionary.com) that ‘deluded’ and ‘mistaken’ are interchangable words in almost any context that does not explicitly deal with psychological illness. So, actually, someone cannot be ‘mistaken’ without being ‘deluded’ since, technically a mistake(*) can be argued to be a mild delusion. You seem to be offering a diagnosis based on your social power structure (a blog commenter with no accountability for your statements) rather than objectively identified AND QUANTIFIED distortions of thought.

* the word ‘mistake’ in this sense is limited to the scope of Still not itchy’s pose: as a statement given by someone in a proffessional capacity.

@Blasphemous_Kansan: I was using ‘delusion’ to mean ‘a belief which is part of a psychological illness’. In the context of this thread, I think that was a fair use of the term, and allowed some brevity on a complicated topic – it also seemed to be how others used the term. If it misled you, I apologise.

(Actually, having looked back, I did first say: “as deluded and psychologically ill”, and it was only my pithy “people can be mistaken without being deluded” which allowed any ambiguity. The rhythm of the phrase wouldn’t allow more provisos).

Kansan–

The denotations of “delusion” and “mistake” may be close, but the connotations are different. Mistakes can be small, more reasonable relative to reality, and people are usually more willing to acknowledge them. If I think there’s a 5:30 train to Boston, email my partner there and tell her I’m going to take it, and there isn’t such a train, I’m mistaken. If I turn up at the train station on Friday because I think I have a ticket for the 6:00 train, and then get to the front of the line and see that it says “Saturday,” that’s a mistake. If I insist that there is a 5:30 train, despite what the Amtrak website says, I might be getting into delusion. If I turn up at the train station on Friday because I thought I had a ticket for the 6:00 train, and then get to the front of the line and see that it says “Saturday,” that’s a mistake.

In terms of skin problems: lots of people have itches. Absent other evidence, I might go to a doctor and say “this area itches, I think there’s an infection” and want a prescription. The doctor examines me, and maybe she gives me an antibiotic, or maybe she says “no, it’s just dry, try changing the soap you use.” [I’ve had both those things happen.] Thinking there was an infection in the second case was a mistake. If I clung to it, and went from doctor to doctor looking for one who would confirm that idea, it might be a delusion. (My current hypothesis is that it’s an allergy to something in my house, because the itch goes away when I’m traveling. I really hope it’s not the cat.)

stillamorgie er… notitchy, again – it’s not the itch that’s the problem. If someone walked into their GP’s office and said “I’m unbearably itchy, I keep scratching myself until I bleed, please help” then there would be no basis to assign a psychological cause immediately. On the other hand, if someone claims they’re infested with bugs or GM nanobots that are causing spontaneous lesions (that only occur within scratching distance, oddly enough), and have the evidence to prove it (usually a box of scabs, fluff, sebum, skin flakes etc) then DOP is the obvious conclusion.

The problem is that even if the itch has physical origins (as someone with peripheral neuropathy I can attest that constant itching is horrific) once the morgie is convinced that they’ve been implanted with hexagonal nanotransmitters, their delusion will cause a nocebo effect, meaning that even successful treatment of the physical cause of the itch will not remove the delusion of infestation.

The symptoms and the delusions are quite separate things. A tinea versicolor rash on it’s own would be treated with antifungal cream. The same rash, with the patient insisting ” it’s the physical manifestation of a chemtrail passing through my house, and now I have to drink dettol and cover my windows with aluminium foil” would be treated entirely differently, not because one patient has tinea and the other has been a victim of GMOPharma conspiracy, but because the second patient is clearly off their rocker.

Morgellons is not a disease, or a conspiracy, or anything but a group of desperately sad, unbalanced individuals who’ve found kinship on the internet. Folie a domain name, Munchhausens by proxy server.

As with your buddies in the cfs/me/fibro/mcs camp, nobody doubts that your pain is real. Nobody thinks you’re not ill, just that your own stigma about mental illnesses and somatisation disorders is preventing you from being well and living a normal life. If you truly wanted to fully participate in society, if you really wanted to be like everyone else, you’d say “Fuck the label, I’ll try anything!”. Instead you thrive on being professional victims, on demonising mental illnesses while raving about mysterious fibres and swirling urine, and hairs that move independently. I vote that all of these somatisation disorder sufferers who refuse treatment that would help, be labelled as suffering from ‘Cop-out Disorder’.

Morgellons is 100% curable by twice daily rinse with 30C Toxicodendron radicans.

Denialist troll is denialist.

On topic:

What sprang to mind reading this was Dumbledore’s line at the end of the ‘King’s Cross’ chapter in Deathly Hallows (paraphrase by me): “Of course it’s all in your head. Why should that mean it isn’t real?”

It seems to me that if the sensation of itching in this case is of psychosomatic origin, is it not the case that it is nevertheless the result of some sort of neurological or otherwise physiological issue?

A marginally-related observation: Someone with a chronic itch problem, whether arising from a skin issue or a nerve/neuronal issue, which they attribute to Morgellon’s or other infestation, is, by buying into the stigma against psychosomatic/psychological symptoms & illness, perpetuating a social structure of psychological ‘ritual purity’. In my non-expert opinion, of course.

I vaguely remembered something and went over to the Morgellons Research Foundation’s site; looking over “geography”- while the map is c. 2007, is there *possibly* a factor based on warmer climes? ( altho’ SoCA is dry, FL not, TX both).

Vicki,

I greatly appreciate the clarifications!! I was trying to limit the scope of the word ‘mistake’ in my little disclaimer at the end of my comment (as a statement of fact made by a professional, as a professional), but did not emphasize enough the difference in implied magnitude between the words ‘mistake’ and ‘delusion’. I was only thinking in the psychological context, but your example illustrates a more practical situation very well.

Again, much appreciated!

stillamorgie er… notitchy, again – it’s not the itch that’s the problem. If someone walked into their GP’s office and said “I’m unbearably itchy, I keep scratching myself until I bleed, please help” then there would be no basis to assign a psychological cause immediately. On the other hand, if someone claims they’re infested with bugs or GM nanobots that are causing spontaneous lesions (that only occur within scratching distance, oddly enough), and have the evidence to prove it (usually a box of scabs, fluff, sebum, skin flakes etc) then DOP is the obvious conclusion.

The problem is that even if the itch has physical origins (as someone with peripheral neuropathy I can attest that constant itching is horrific) once the morgie is convinced that they’ve been implanted with hexagonal nanotransmitters, their delusion will cause a nocebo effect, meaning that even successful treatment of the physical cause of the itch will not remove the delusion of infestation.

The symptoms and the delusions are quite separate things. A tinea versicolor rash on it’s own would be treated with antifungal cream. The same rash, with the patient insisting ” it’s the physical manifestation of a chemtrail passing through my house, and now I have to drink dettol and cover my windows with aluminium foil” would be treated entirely differently, not because one patient has tinea and the other has been a victim of GMOPharma conspiracy, but because the second patient is clearly off their rocker.

Morgellons is not a disease, or a conspiracy, or anything but a group of desperately sad, unbalanced individuals who’ve found kinship on the internet. Folie a domain name, Munchhausens by proxy server.

As with your buddies in the cfs/me/fibro/mcs camp, nobody doubts that your pain is real. Nobody thinks you’re not ill, just that your own stigma about mental illnesses and somatisation disorders is preventing you from being well and living a normal life. If you truly wanted to fully participate in society, if you really wanted to be like everyone else, you’d say “Fuck the label, I’ll try anything!”. Instead you thrive on being professional victims, on demonising mental illnesses while raving about mysterious fibres and swirling urine, and hairs that move independently. I vote that all of these somatisation disorder sufferers who refuse treatment that would help, be labelled as suffering from ‘Cop-out Disorder’.

Itchy; it was exactly those two phrases that rubbed me the wrong way, and had me a little ocnfused as to why it appeared you were lambasting lazy diagnoses, while appearing to partake in it!

Thanks for the clarification!

There are cause and effect problems here. The first problem is itchy skin.

You’ve offered no proof that “itchy skin” is really itchy skin. There are mental processes and conditions that can make the person scratch and cause itchy skin. Orac mentions this in his post. Psychosomatic studies are real, but you seem to be more than willing to write them off in preference for some kind of anecdotal evidence and wishful bias.

This appears to be an area of study that can benefit from placebo testing. I’ll do some real research when I can, unless someone else has the time. I have 4 deadlines by the end of week and this blog is just a minute distraction in between.

Seth Mnookin gives an excellent history of the Morgellons affair in The Panic Virus. In September 2009 the CDC’s NCZVED DPD[1] commissioned an external panel to look into it, but (so far as I know, anyway) they have not reported back yet.

[1] There is a truly wonderful expansion of these initials, but this margin is too small to contain it.

My question would be, why are people coming down with a chronic itch disorder now, in great numbers that coincide so greatly with the rise in prevalence of the ‘Morgellons disease’ meme? It seems to me that in order for Morgellons to be an artifact of diagnostic substitution, there has to be something to substitute for; we should be able to find people, in numbers comparable to those who are claiming Morgellons now, who were claiming heavy itches then. But I’ve never seen any indication of such.
helooo istanbul kurdele nakisi

JayK — I would be willing to bet that some Morgellon’s cases really do start out as genuine itchy skin. I recently had a fibroma removed from my leg (turned out to be benign, as most do), but it had been itchy, and before it was removed, it had *oozed* (which is what made me a bit concerned it might actually be cancerous or something). I also got to see it before it was put in the specimen container, and it looked *weird* under the skin. Not at all as I’d expected — but not totally alien or anything. Yet if I didn’t have this fascination with medical stuff and biological stuff, I might think something very strange indeed was going on, and been suspicious at my doctor’s easy dismissal of any risks. (Also, if I didn’t know her personally and know that she’s just a very fast-moving and bubbly person.)

I get itches. Everybody gets itches. And everybody seeks correlations; it’s part of being human. If I hadn’t gone and read up as much as I could about fibromas and such, I might’ve been tempted to think there was something else going on, and perhaps connected other itches to that one, worried at them, made them worse, and perhaps even triggered new fibromas. Which would have *confirmed* my wrong suspicions!

I can totally see a Morgellon’s case arising out of a perfectly benign case of actual, real skin itchies, and then persisting long after the original problem was resolved.

@#42:
Back when I was a med student, the term for a chronic itch disorder for which no cause could be found was neurodermatitis. It was thought to be caused by a “vicious circle” of pruritis, excessive scratching resulting in skin inflammation (dermatitis), causing more itching and scratching, and so on. Some of these cases could result in extensive excoriation and open wounds. It is quite common. I suspect that Morgellons is a subset of neurodermatitis, with the added feature of fibres and other junk sticking in the scabs being mistaken for parasites emerging from the skin.

Interestingly, the parasitic infestation that did not appear in the studies was scabies. This can produce intense itching with scratching, and is in fact a true parasitic disease. However, it usually does have specific findings on examination, and can be diagnosed by microscopic examination. Also, the mites are microscopic and would not be seen by the patient.

@Calli Arcale: proper case history would be essential for determining the original causation. A reseacher or physician would have to rely on introspection, however, to try to come up with a determination of origins, which would result in various biases, both from the observer and the patient. You started to hint at that, but I thought I’d try to summarize it.

No one goes to a doctor with the first little “itch”, so proper documentation of origin just isn’t going to be available. A patient that is convinced in a physiological origin for “itch” will not be a good source of information. The original “itch” wouldn’t have enough initial mental/learning reinforcement to be able to recall the environmental and ecological variables that might be important. It isn’t likely that an itch would start out with the same reinforcements as a trauma.

I’m sure someone will claim I’m trivializing their “real” problem, but I’m not trying to do that, I’m trying to determine a way to get a recreation of an original diagnosis long after the start of the itch.

My original post about using placebo treatment might be useful in determining physical vs. psychosomatic origins or present causation.

JayK, the sensation of itching is an internal personal subjective feeling. There is no objective reality to the sensation of itching other than in the mind of the person who has that subjective feeling. If you want to get hyper-technical, then you could say there is no evidence for any feelings, all feelings merely being internal personal subjective experiences.

The definition of “delusion” is

“an idiosyncratic false belief that is firmly maintained in spite of incontrovertible and obvious proof or evidence to the contrary.”

http://medical-dictionary.thefreedictionary.com/delusion

With this definition, phantom limb pain is a delusion. There is no limb, that is obvious proof that the limb could not be producing pain. Why isn’t phantom limb pain called “delusional limb pain”?

Is there any evidence that individuals are not experiencing itchy skin? No there is not. There certainly isn’t “incontrovertible and obvious proof or evidence” that they are not experiencing itchy skin. There isn’t any evidence that those affected individuals are not experiencing itchy skin. There couldn’t be because itchy skin is an internal personal subjective experience. No one by the person experiencing it can know if it is “real” or not.

The diagnosis “Delusion of Parasitosis” is a medical diagnosis. It has a precise medical meaning that is distinct from what non-medical professionals think it means. It does not mean that the person with DoP is psychotic or delusional or crazy. It can only be diagnosed after there has been a sufficient medical work-up to rule out all possible parasites and when the patient then understands that itch causation due to all possible parasites has been ruled out.

Delusional limb pain is easy to diagnose. If someone reports pain in a limb they don’t have, the absent limb can’t be causing actual pain, it must be a delusion. Calling phantom limb pain delusional limb pain would not be helpful to the patient. Pain, like itch is a property of the peripheral nervous system that isn’t under conscious control. Virtually all people don’t have conscious control over the pain and itch signals produced by their peripheral nervous system. When itch of unknown cause remains unknown, that does not mean that there is no cause, or that the cause is “mental”, or that the cause is “delusional”, it means that the cause is unknown.

SSRIs have been reported to help the itching associated with primary biliary cirrhosis. The itching of primary biliary cirrhosis is not considered to be DoP because PBC is known to cause itching as a symptom. How PBC causes itching as a symptom is unknown. How SSRIs relieve the itching of PBC is unknown. I suspect that SSRIs alter the reuptake of serotonin by mast cells and so modulate the “gain” that mast cells exhibit. Mast cells are triggered by serotonin, when they are triggered they release serotonin. That released serotonin can release more serotonin, depending on the “gain” of the system. That SSRIs relieve the itching of PBC does not mean that the itching of PBC is “in their heads”, even though SSRIs are also used to treat depression.

A treatment for Morgellons was demonstrated in the film Hellraiser II.

It was a bit harsh though.

Delusional parasitosis SUCKS. After my apartment got bedbugs, I got it taken care of but for a year afterwards the sensation of a bead of sweat running down my leg was enough to set me off my rocker completely, even though I never entertained the notion that it was anything else.

Clearly Coulter & indeed I have attained a considerably higher standard of scientific accuracy.

I’m sure there’s a name for this sort of delusion too.

Delusional parasitosis definitely sucks. And once it’s been self-described as parasitosis, confirmation and availability biases keep it there. I spent months thinking I had some kind of insect problem, and a neighbour with an extremely, extremely violent abusive husband, and was sleeping two hours a night and calling police in the middle of the night about screaming constantly, but oh no, they’re not related. Good thing all that violence and sleep loss hasn’t affected me at all. I’m sleeping in the college residence office lounge on the other end of town because still a third party in the apartment building, with a drug habbit, got mad at me calling the cops, and now she’s taken to yelling threats and scraping on my door with a kinfe to make scary knife noises, but I’m not affected. Now I just need to get rid of these damn dermal insecticide resistant scabies or lice or something on every inch of my skin that my inept doctor can’t find.

Yeah. There were no insects. Sorry doc.

There ARE also real peripheral neuropathies which cause physical sensations of itching; they don’t originate in the brain, they originate in the peripheral nerves themselves. Many are also idiopathic, or undiagnosable under anything but highly specialist conditions, because the cause is either very rare and arcane or just not well understood. It doesn’t mean that any parasitosis is real, but it does mean that the people experiencing the sensation aren’t experiencing a psychosomatic symptom.

The problem is in the name, and in the reaction: calling it delusional parasitosis, though accurate, implies to the average lay person “you’re crazy”, and the “it probably does originate in your brain” reaction sadly only reinforces that. Is it any wonder that people get defensive, and flee to the arms of the woo-meisters who at least tell them “yes, it’s a real and physical, not mental, thing”?

I am not on the side of the woo-meisters — and I dislike this as much as I dislike the whole “chronic Lyme” thing, because I think as soon as someone embraces a false diagnosis and becomes emotionally wedded to it, their chance of a real diagnosis and effective treatment drops to nil. But it does no-one any good to ignore why people go for the false diagnosis in the first place.

I strongly suspect that Morgellon’s starts out with a real itch which gets worse from scratching and from the extreme decontamination measures cited by Mark Crislip.

Since I know I have a history of allergies, if something itches, my first assumption if I itch (and my clothes aren’t rubbing or brushing there) is it’s an allergy. If I’ve been outside after dusk during mosquito season, and I see welts, I assume mosquito bites. If it’s a red blistery rash, probably poison oak or mango peels.

But if I didn’t know about all this, and my mama hadn’t told me that scratching makes it worse, I might start a cycle of worsening itch leading to scabs. Scabs that might get clothing fibers stuck in them, which might look scary to someone who hasn’t noticed this before. (How they’d avoid noticing stuff sticking to scabs from cuts etc. I don’t know–maybe they’re more careful with bandages than I am, maybe less observant.)

Regarding the fibers, I have an incidental expertise in recognizing various bits and threads under the microscope. I finally tried to avoid wearing long sleeves, particularly sweaters, because I was tired of getting fibers on my slides. I could probably recognize my favorite items of clothing from the synthetic and natural fibers that fell onto slides and petri dishes. (Lots of dyes, or maybe even the synthetic fibers themselves, fluoresce brightly.)

How do you pronounce morgellons? Is it morge (like “more”)-ellons or more-gell-ons? Or maybe even more-guh-lons?

The word Sir Thomas Browne used to name the disease was French, so it was probably more like “more-gay-yones” with a bit of a gargle. Here’s how he described it.

Hairs which have most amused me have not been in the face or head, but on the Back, and not in Men but Children, as I long ago observed in that endemial Distemper of little Children in Languedock, called the Morgellons, wherein they critically break out with harsh Hairs on their Backs, which takes off the unquiet symptoms of the Disease, and delivers them from Coughs and Convulsions.

stillamorgie er… notitchy, again – it’s not the itch that’s the problem. If someone walked into their GP’s office and said “I’m unbearably itchy, I keep scratching myself until I bleed, please help” then there would be no basis to assign a psychological cause immediately. On the other hand, if someone claims they’re infested with bugs or GM nanobots that are causing spontaneous lesions (that only occur within scratching distance, oddly enough), and have the evidence to prove it (usually a box of scabs, fluff, sebum, skin flakes etc) then DOP is the obvious conclusion.

The problem is that even if the itch has physical origins (as someone with peripheral neuropathy I can attest that constant itching is horrific) once the morgie is convinced that they’ve been implanted with hexagonal nanotransmitters, their delusion will cause a nocebo effect, meaning that even successful treatment of the physical cause of the itch will not remove the delusion of infestation.

The symptoms and the delusions are quite separate things. A tinea versicolor rash on it’s own would be treated with antifungal cream. The same rash, with the patient insisting ” it’s the physical manifestation of a chemtrail passing through my house, and now I have to drink dettol and cover my windows with aluminium foil” would be treated entirely differently, not because one patient has tinea and the other has been a victim of GMOPharma conspiracy, but because the second patient is clearly off their rocker.

Morgellons is not a disease, or a conspiracy, or anything but a group of desperately sad, unbalanced individuals who’ve found kinship on the internet. Folie a domain name, Munchhausens by proxy server.

As with your buddies in the cfs/me/fibro/mcs camp, nobody doubts that your pain is real. Nobody thinks you’re not ill, just that your own stigma about mental illnesses and somatisation disorders is preventing you from being well and living a normal life. If you truly wanted to fully participate in society, if you really wanted to be like everyone else, you’d say “Fuck the label, I’ll try anything!”. Instead you thrive on being professional victims, on demonising mental illnesses while raving about mysterious fibres and swirling urine, and hairs that move independently. I vote that all of these somatisation disorder sufferers who refuse treatment that would help, be labelled as suffering from ‘Cop-out Disorder’.

I agree with Luna that there’s a problem with the name.

There is a fine line between the patient with chronic skin itching and no identifiable medical diagnosis and another with chronic skin itching who has a fixed delusion about the cause of that itching. Perhaps, the ones with the delusions started out in the other category and turned to the delusion out of frustration at medicine’s inability to solve their problem. I think it is a mistake to label all of them as delusional.

I am, in no way, suggesting these patients actually have any parasites, but I can identify with the frustration. My husband has a mystery disease -involving syncope (and some itchy skin, by the way) – and for years has been treated as either crazy or malingering by most physicians he encountered.Only after being married to an MD, did he get the workup he needed.

I read somewhere (New Scientist?) of a group of doctors who, it was said, wanted to make “Morgellons disease” an alternate name of delusional parasitosis, because their patients would accept treatment if and only if the doctor agreed they were suffering from “Morgellons”.

I don’t know quite what I feel about that …

Has anyone been able to read this post and comment thread without becoming hyper-aware of all the little itches on your body you were previously successfully ignoring?

To anyone who answered “yes” to the above question: how about now?

Morgellons advocates frequently link Lyme disease to Morgellons, with some even asking whether Morgellons disease is the “Lyme disease of our time.”

Even the Chronic Lyme enthusiasts find the Morgellons crowd embarrassing, regarding them as parvenus and wannabees who should keep to their own specialised websites and stop bringing other delusional illnesses into disrepute:

**Please note that unfortunately, the Lymebuster forum can no longer be affiliated with the original Lymebuster website. We will not go into specific details, but evidently she does not like that we include Morgellons disease on our board despite the obvious connections for many of us. We will continue to keep our focus on getting recognition toward the seriousness of Lyme and Morgellons diseases.

I’m clearly way too suggestible to be reading stuff like this – I am now itching all over…

Here’s someone complaining — with no evidence of insight — that she are doubly cursed, suffering from OCD as well as Morgellons. Possibly not representative.

There is bonus discussion of the relative usefulness of Magical Mineral Supplement versus colloidal silver.

With this definition, phantom limb pain is a delusion. There is no limb, that is obvious proof that the limb could not be producing pain. Why isn’t phantom limb pain called “delusional limb pain”?

No, it would only be delusional limb pain if they were convinced that the limb were really there (although perhaps not visible). One can experience referred pain without being convinced that its true origin is where it seems to hurt. An itch is not a belief, it is a sensation, which could have its origin anywhere from the skin to the brain. It becomes a delusion when the individual develops an unshakeable conviction that the cause must be parasites.

“People are looking for a physical diagnosis because of the stigma associated with psychological disorders.”

I always find this reason to be just a bit too convenient for those on the psych side of the debate. It is invoked all the time when somebody, especially a patient, does not agree with a psych interpretation, as if merely listing the possible bias is sufficient to prove it.

Psychiatry has a long and very troubled history of making unscientific claims and illegitimate power grabs (including right now with some of the proposed changes to the next edition of the DSM), so there are very good reasons to be cautious about accepting those diagnoses and the above assertion so uncritically.

Clearly Coulter & indeed I have attained a considerably higher standard of scientific accuracy.

I’m sure there’s a name for this sort of delusion too.

Dunning-Kruger Effect.

Those that easily confuse psychiatry and psychology might have a bias.

The negative connotations of a psychologically determined disorder is real, and the fear of being diagnosed is also real. Take for instance the increased number of women that are diagnosed as depressed vs. men. One way to look at that is that women don’t have as high of a negative connotation to visiting or being diagnosed with depression while men are afraid that their masculinity will be questioned if they either see a psychologist or if they are diagnosed.

The same thing might be at play, where a psychological diagnosis can be ignored or avoided in favor of a physiological problem that has a higher chance of being “cured” with a potion or poultice.

@55… haha and thank you very much. EVERY time I read about Morgellons I end up itching. Also, when I’m outside at dusk and see bugs flying around, I start itching even though I haven’t been bitten.

However, those itches do not compare to the times I’ve been bitten by chiggers. You don’t feel them crawling on you and you can’t see them. The urge to scratch those bites is overwhelming. One year, I got so many bites after working in our yard that I have scar tissue behind my knees from the scratching.

Vielen Dank Herr Doktor, I went to that lymebuster forum, and I haven’t laughed that hard in a long time. They have more conspiracies then Prisonplanet.

Anne and Adrian W.– Huh. Reading stuff about Morgellon’s doesn’t make me the least bit itchy. But reading descriptions of meals always makes me hungry. It’s interesting, the variation in people’s responses to things!

Has anyone been able to read this post and comment thread without becoming hyper-aware of all the little itches on your body you were previously successfully ignoring?

To anyone who answered “yes” to the above question: how about now?

Tonight is my 9th anniversary. So keep that in mind when I tell you, with all due respect:

Go to hell.;)

@ herr doktor bimler: Thank you for the reference. I also located some articles featured in mainstream media and located pictures of the “fibers, organisms, threads” that “infect” Morgollen’s patients on a Lyme disease website:

“lymephotos”

Many of the same practitioners/experts who were associated with ILADS (International Lyme and Associated Diseases Society) are now associated with Morgollen’s disease and sit on a scientific advisory board for Morgollen’s disease.

According to the articles I read in the Washington Post and Los Angeles Times, people afflicted with the disorder organized a telephone campaign during the 2008 election cycle directed at candidates. One million phone calls were placed to get candidates on board to fund a study. The CDC was budgeted $ 1,000,000 specifically to research Morgollen’s. The study is now complete and will be published within the next few months; such a waste of dwindling research dollars that could better be used to fund cancer research.

@ Mu: I have been following the threads as well and they are now questioning the “credentials” of the research scientists. Hey, it works all the time for the autism fringe groups.

Here’s someone complaining that she is doubly cursed, suffering from OCD as well as Morgellons:
http://www.natmedtalk.com/alternative-therapies/19368-mms-morgellons-disease.html
Note the lack of insight. One can only hope she is not representative.

The thread degenerates into a discussion of the relative benefits of colloidal silver and Miracle Mineral Supplement.

I blame the existence of the Internet. If a tree falls over in the forest and there is no-one to hear, not only does it make a sound, it goes straight onto the WWW and blogs about the experience, while other trees reply with messages about new miracle cures for falling over that the medical establishment doesn’t want us to know.

A comment has been held for moderation on account of links, so I’ll urge people to google “Morgellons + OCD”. Some of the first-hand accounts are enlightening, despite the authors’ failure to see any link between the two afflictions with which they are burdened.

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