Feb 06 2012
Morgellons – Creating a New Disease
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National News sources led 1 month ago with unidentified Skin disease mystifies doctors. Then 10 minutes into the story introduces the research by CDC that clearly explains this skin disease.
Suffers just do not like the explanation.
So it is a mystery illness instead of a psychiatric condition. I suppose Depression and Schizophrenia are also a “Doctors Baffled”, “Mystery illness” as well. If someone were diagnosed with cancer the news wouldn’t do a 20 minute world news report on brain disease leaves medical community baffled. Or.. maybe they would.
We just covered the basics of psychosomatic disorders in our medical psychology class and the stigma attached to being diagnosed with such conditions was brought up again and again. I think an important part of this stigma is the myth that because psychogenic disorders are essentially “in the patients head”, they are being imagined and thereby well within the patient’s control if they would but toughen up and deal with it. This misunderstanding stems from a lack of appreciation for the complexities of the mind-body paradigm that only education based on sound research can ever hope to dispel.
Seth Mnookin devotes much of one chapter in The Panic Virus to Morgellons. It’s relevant because the same mechanisms seem to be in play when communities of anxious people amplify one another’s fears of a largely (or completely) imaginary danger — whether it is vaccine injury or bugs under the skin. It’s not a new phenomenon, as anyone living in Massachusetts in 1692 could attest.
Prior to 2002, are there any reports in the literature of unexplained Morgellons-like cases? If Mary Leitao did not just make up the disease, then there should be cases of it that predate her son’s … right?
To paraphrase a famous AIDS researcher, it’s the fibers, stupid! The CDC saw none, they had no Morgellons patients in their study, and the study is pure horse manure, which the author of this blog is feeding you. Please keep an open mind about what we don’t yet understand.
tgrimes – how did you come to that conclusion? It seems like you are assuming that because the fibers they saw were consistent with clothing fibers that they did not have true Morgellons. But they admitted subjects who had the syndrome.
Unless you can point out a methodological flaw, or have some reason to accuse the CDC of fraud, it certainly seems like you are a true believer who is dismissing negative evidence out of hand. That means that it is you who have the closed mind – it is closed to the evidence, since you have apparently already come to your own conclusion regardless of the evidence.
Looks like tgrimes is using the “no true Scotsman” sort of logic.
I have the symptoms of this problem and can attest to how maddeningly irritating it can be. The itchyness is real, and it feels good to scratch … To the point of bleeding. I have it on 4 or so distinct patches on my legs and have seen the fibres that obviously match my clothes. My doctor gave me Ectosone cream. One or two applications will end the itchiness for a week or two. One prescription has lasted me two years, probably longer than the ‘best before’ date. It starts with red bumps that might look like bug bites, but I suspect are more like an allergy or histamine thing.
I certainly sympathize with other sufferers, I have had anxiety issues and a bit of depression, both of which have been under control for a few years without drugs. I recall distinctly the response of my doctor when he look at my itch problem. Wanting to help me while trying to hold back expressions of ‘oh no not another one of these people’, and telling me repeatedly to ‘be carefull’. In hindsight i think he was concerned I might think I had ‘morgellons’, and so was choosing his words carefully.
Anywho, I actually give credit to this website and similar sites that put the science out there. It has helped me to not trip into paranoia over it. There may not be an obvious cause or cure. It may just have to be managed as best as you can.
Listen to your doctor, follow the evidence rationally and realize that your perceptions can be wrong. And really try not to scratch, it only makes it worse!
For Steven Novella:
CDC fraud? Read what people who know about this topic have to say:
http://www.krmg.com/news/news/local/local-researcher-looks-bizarre-medical-condition/nHWFf/
For ccbowers:
No true Scotsman? More like, too bad that they are all crazy and there is nothing we can do for them. If all science were like that we would be back in the Stone Age.
For Suraky:
Hang in there, baby. Help is on the way, but not from this group.
Tgrimes, hang in there, I understand your concerns. Once you find the way that works for you to help you climb out of the confounding conspiracies, you may be able to carry on with your life in a pproductive way.
ugh, Morgellons. There was a researcher I knew of went to do research at a DO school on Morgellons. The man thinks he is half alien, and believes that Morgellons is some sort of alien infection, really. I’ve also seen on mercola, a NY researcher trying to correlate Morgellons with GMOs. it’s really all over the map, and amazing that these people get funding from their institutions. although, it is always described as being psychosomatic, yet I don’t think that’s always the case. There was a podcast, I thought by discover magazine, which would read case studies (medscape maybe?) and one was a doctor who had an late middle aged female patient who was sure she had Morgellons. She had seen previous doctors who couldn’t diagnose her skin infection, he did tests to find she did have a very rare skin infection that didn’t respond to the treatments she had been given in the past. But when he contacted her to tell her this, and prescribe the right treatment, which should clear it up, I believe she refused treatment, saying she was sure she had Morgellons. such a shame.
Amy – once a fake disease gets enough press and popularity then some patients will gravitate toward it. This includes people who have another organic disease, who then get misdiagnosed with the new fake disease. It is very counterproductive.
tgrimes – so a true-believer in Morgellons does not trust the CDC, and this is supposed to be evidence for fraud? That is beyond thin. It’s nothing but confirmation bias.
You also set up a nice straw man. No one says that sufferers are “crazy”, or dismisses their suffering, or says we can’t do anything for them. We treat patients with psychogenic symptoms.
There is a third alternative between the two extremes (actual skin infestations and psychogenic delusions of skin infestations).
http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory.html
The symptoms of skin itching could be due to low nitric oxide in the skin, which potentiates mast cell degranulation. In other words, low NO causes mast cells to degranulate at lower thresholds, the cytokines, histamine and other agents released when mast cells degranulate further lower the threshold for degranulation of adjacent mast cells, and so it is possible to get propagating mast cell degranulation which would be indistinguishable (by feel) from creepy-crawly things on or in the skin.
I think the symptoms of itching are real, the cognitive imputation that the itching is due to actual creepy-crawly things is not real. But human ancestors have had to deal with creepy-crawly things over evolutionary time, long before our ancestors had a CNS sufficient to be able to have delusions. I suspect that is where the feeling that there are creepy-crawly things comes from, non-cognitive, hard-wired, neuroanatomy from deep evolutionary time.
I think calling it a hallucination is better than calling it a delusion. There is such a stigma over mental health issues that many people would rather suffer with symptoms than receive effective treatment that labels them as “crazy”.
Real and imagined infestations are not valid end members. I’m not infested and I don’t imagine myself to be. I certainly am skeptical of NO, if for no other reason than the “It’s The One True Cause Of All Disease” fallacy ™ that anyone will recognise if they read the comments on this blog regularly
I should add that I’ve always been a fidgity person. It would be hard to say whether my fidgity ways cause me to scratch and start the cycle or vice versa. I wonder if many sufferers might feel better if they could just find a way to not scratch and not think about it.
“I certainly am skeptical of NO, if for no other reason than the “It’s The One True Cause Of All Disease” fallacy ™ that anyone will recognise if they read the comments on this blog regularly
”
There’s no flies on you.
Saith the sly fwatter.
A skeptic can only argue from facts and logic. An argument from ignorance is not something that a real skeptic ever does, only a pseudoskeptic argues from ignorance.
Arguing that low NO can’t be involved because someone says it is involved in everything is an argument from ignorance. I have plenty of links at my write-up to backup a connection between low NO and itchy skin and all the other symptoms that people report.
The two extremes I mentioned were paraphrased from what Dr Novella said.
Itchy skin can have any number of reasons, from infections and nerve damage to dry skin and various psychological factors. The reason why my skin is itching ATM is obvious, fortunately – I am highly suggestible and have just read this post and comments
daedalus,
I think we were both joking (note the smilies)
I enjoy reading your posts.
Except that he wasn’t joking.
Dear Dr. Novella,
I would like to encourage you to step back for a moment and apply a bit of the “skepticism and critical thinking” mentioned at the top of your blog, to the CDC study and the broad topic of Unexplained Dermopathy, AKA Morgellons Disease. You may not be aware, but an External Peer Review was carried out and a written report was prepared for the Board of Scientific Counselors of the CCID (Coordinating Center for Infectious Diseases). The initial charge from the Division of Parasitic Diseases and preliminary report can be found on the CDC website at: http://www.cdc.gov/unexplaineddermopathy/docs/ud_peer_review_progress-nov_2009.pdf
The final report of the External Peer Review of CCID’s Unexplained Dermopathy (UD) Project is available to the public on the CDC website at: http://www.cdc.gov/unexplaineddermopathy/docs/external_peer_review.pdf
In your blog you make the statement: “With this study, in my opinion, the evidence is now fairly solid that Morgellons is not a new pathophysiological entity. It is entirely consistent with delusional parasitosis.” Everyone is certainly free to come to whatever conclusion they choose. Still, in the last paragraph of the paper itself, the authors wrote: “We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition, as has been proposed by those who use the term Morgellons, or wider recognition of an existing condition such as delusional infestation, with which it shares a number of clinical and epidemiologic features [26–31] (italics mine).
The real bottom line was that the authors were not able to conclude if this unexplained dermopathy was new or not. When working with graduate students, and medical students who may publish their clinical work, I always encourage them to avoid weak (what some call wishy-washy) statements. One should never overstate a conclusion, but authors should use the strongest language that the data or results suggest. At the very least, a skeptical eyebrow should be raised whenever a writer finds that a sentence needs 50 or so words to convey a thought. That very important conclusions statement in the paper is weak on both accounts.
Let us back up for a moment. What were the goals of the study? To characterize the unexplained dermopathy in three ways: a) a cross-sectional survey, b) clinical evaluations & c) histopathology. What is a prerequisite for the results of such a study to have any informative meaning? First, the study group must be the correct population. Did Kaiser include the final correct population in the study? There are two observations from the external peer review panel (which included dermatologists, psychologists & scientists) that are worth considering:
1) Section #5 of the Peer Review comments state that: “Blinded samples representing extensive systematic photographs of the participants’ skin were reviewed by an independent dermatologist who identified no primary lesions (Italics mine)”.
2) “Section #3: What are the study’s limitations?
a. “There is no universal agreement as to how to define the condition; nor is there a diagnostic test. The case definition used in the study was broad in order to include patients who may have – or believe they may have — a condition that is popularly referred to as “Morgellons.” Although the definition required fibers or particles to be coming out of their skin, no patient had a fiber extruding from normal skin or visible within normal skin. If there are such patients, the study did not identify them (bold italics mine).”
I quite agree with your discussion about use of the word “syndrome”. Twenty years ago there were thought to be two types of long QT syndrome (LQTS), an autosomal recessive and an autosomal dominant. Now, there are a half-dozen of the autosomal dominant subtypes of LQTS. Perhaps “unexplained dermopathy” has more than one phenotype and cause. Did the subjects of the Kaiser/CDC have an unexplained dermopathy? The answer may well be yes. Did those same subjects have the unexplained dermopathy that is also called Morgellons? The absence of primary lesions and failure of any of the participants to match the criteria of the case definition suggests the answer is, no.
The goal of the study was lofty, to combine a thorough epidemiology study while trying to identify whether or not Morgellons is a distinct pathology. Unfortunately, for that approach to work, the correct study group must first be chosen. In hindsight, study participants who actually met the case definition should have first been identified & then the cross-sectional survey would have meaning. As it stands, of what value are figures 2 & 3, and tables 1 & 2 from the paper? If the conclusion truly is that the subjects in this paper are mostly suffering from delusional infestation (the term that seems to be more en vogue than delusions of parasites), then the geo-spatial mapping served what purpose? Perhaps, to validate that a delusional disorder does not truly cluster? That wouldn’t be too much of a shock unless there were a sudden, localized outbreak of ergot poisoning.
What went wrong? There are factors that may have played a role. Initially, 467 potential cases were identified. One hundred and fifteen supposedly met the case definition (not by way of physical examination). Of those, 64 ultimately declined to participate. Forty one subjects were examined and 31 of those had histopathology samples taken and 12 participants had fibers collected from them. Perhaps some of the 115 who were identified would have actually met the case definition if they had been examined. Why would so many people opt out of a study that could have helped prove their case? Who can say for sure? Purely anecdotally, some felt the questionnaire was pre-biased due to questions about mental and emotional health. Others were opposed to the idea that Kaiser Permanente Northern California was the HMO awarded to conduct this study. Some anecdotally felt the goal of the study was to disprove the existence of Morgellons rather than a sincere attempt to determine if there is a novel pathology at work.
As a member of the external peer review panel, I do not share that last opinion. I think that Dr. Pearson of the CDC genuinely was trying to get to the bottom of this controversy. I do think that requests I made early in the process to discuss possible design concerns did not filter down to either Dr. Eberhard or Dr. Pearson. Again, in hindsight, it might have been nice to have begun with a population who actually met the case definition & then do the epidemiology. Such was not the case, so we are left with the paper as it is. A faculty colleague pointed out to me that by using “delusion” in the keyword search Kaiser may well have biased the results of the search. What if there is a mixture of delusional individuals mixed in with a population who is not, and yet they claim to share similar symptoms?
Delusional infestation is a controversial topic. Some argue that everyone with an unexplained dermopathy is delusional, while at the other extreme, there are those who argue that there is no such thing as delusional infestation. I think that delusional infestation is a valid diagnosis. I am a scientist and not a clinician, so obviously I have no ability to make a diagnosis. I can give an opinion though. Once, I spoke with a person who told me that “everyday at 2:10 pm, when the train goes by, the vibrations in the train tracks make the ants crawl out of my arms.” Well, while I’m not a physician, I would argue that there is a pretty strong case to be made for that person being delusional. On the other hand, doctors who have patients with Morgellons observe: a) primary lesions & b) fibers emerging from or within intact skin. There are papers in various stages from “in preparation” to “submitted” from clinicians who have patients with Morgellons. Hopefully, these will be high quality papers that will answer some of the questions that the CDC paper did not.
You are absolutely correct Dr. Novella, that there are diagnoses of exclusion. Your example of migraine headaches is indeed a perfect example. Delusional infestation should be a diagnosis of exclusion. Instead it has often become a first diagnosis; often with no pretense that anything was excluded. I have, unfortunately, been privy to many examples of this shoddy side of medical practice. Especially with the advent of time-stamped electronic medical records has this been apparent. In the most egregious example, a physician wrote DOP as a diagnosis, one minute after entering the room. This patient had no history of psychiatric disorders (the putative Morgellons sufferer sent the entire packet of medical history; unrequested on my part by the way). The doctor ordered no initial or follow-up lab tests and in this instance never examined his patient’s skin. Hence, was this truly a diagnosis of exclusion? While that example is on the extreme side, many who claim to have Morgellons have experienced the 3-10 minute visit with a doctor. The common theme is that there were no diagnostic tests performed and no examination with a derm-scope to exclude other diagnoses first. Delusional infestation is frequently not a diagnosis of exclusion.
Recently, a rancher in Oklahoma went to 3 doctors with what he thought were Morgellons symptoms. He had some minor weight loss, anxiety, a rash with secondary lesions on his shins that were slow to heal & fibers in the lesions, which he brought in to the doctors. Bringing in the samples got him a DOP label in a hurry. Fortunately, the 3rd doctor his wife made him see did a thorough examination (the first two diagnosed DOP with no blood work). Turns out this man had elevated thyroid hormone levels. The initial problem with his shins was nothing more than exacerbated pretibial myxedema. The man’s wife filled in a missing piece of the puzzle. She observed droplets of blood on the sheets in the morning. Unaware that he was even doing it during his sleep, her husband was scratching his itchy shins at night, which caused the bleeding & secondary lesion formation. Other lesions on his hands & arms were eczema, possibly aggravated by the bone-dry air from the ongoing drought. Antihistamines, topical steroids and PTU, followed by eventual thyroid oblation & this chap was as good as new. In his case he did not have Morgellons & the fibers were in fact textile. I mention this case simply to point out that the improper application of the delusional label is unprofessional, and there are subsequent dangers that can go along with a cursory DOP diagnosis. In actuality, that third doctor may well have thought her patient was delusional. But, she followed the guidance that delusional infestation is a diagnosis of exclusion. Her proper diagnostic action quickly identified the underlying pathology. The previous two doctors could have just as readily identified the cause of their patient’s illness, but they couldn’t get past the fibers and jumped to the delusional conclusion. There was no diagnosis of exclusion; instead a diagnosis based on bias that ultimately endangered their patient’s life, as thyroid storm can be fatal.
The readiness to quickly jump to the delusional conclusion is evident in journal articles even when a piece of evidence calls that diagnosis into question. Notice the following in the retrospective Hylwa study from 2011: “The large number of dermatitis diagnoses found by skin biopsy raises the possibility that a true pathologic condition may underlie delusional skin disease. (Hylwa, SA, et al; Delusional Infestation, Including Delusions of Parasitosis Results of Histologic Examination of Skin Biopsy and Patient-Provided Skin Specimens. Arch Dermatol. 2011;147(9):1041-1045; italics mine).” Surprisingly, an unexpected prevalence of dermatitis was observed, suggestive of an underlying physical pathology, but what sticks? The label of delusional is firmly attached, whether correct or not.
The external peer review included the following statement in section 7: “What should the priorities be in the future?…
…b. Physicians encountering patients who may have this condition should be
encouraged to publish in a peer-reviewed medical journal a description of a carefully documented case. Photographs of fibers extruding from (or present within) normal intact skin, detailed histopathologic examination of biopsied skin specimens, and thorough analysis of the fibers will be especially helpful in clarifying several lingering questions.”
In all probability, treating clinicians and scientists unaffiliated with the CDC will move forward with characterization of Morgellons or unexplained dermopathy. If in the future, the CDC is arm-twisted into another study, they might start with a confirmed population that actually meets the case definition. Such a study may reveal, to their surprise, that not all examples of unexplained dermopathy are the same, and there really is an unexplained dermopathy syndrome.
We encourage our students to read papers in a critical manner and to have a healthy dose of skepticism. You clearly value both of those characteristics. I encourage you to not only read my comments with skepticism (as you should), but to revisit the CDC study with similar skepticism and critical thought.
(As an aside, I do not have time to blog or engage in back and forth discussion on this or other topics. I merely wished to share my thoughts, as Dr. Novella and other participants of this thread have. In my experience, debates can drag on endlessly and accomplish little, so this is a one-time posting.)
Respectfully,
Randy S. Wymore, Ph.D.
Director, Center for the Investigation of Morgellons Disease
Assoc. Prof. of Pharmacology & Physiology
Oklahoma State University
Center for Health Sciences
Tulsa, OK 74107
randy.wymore@okstate.edu
Randy – thanks for the thorough comment.
To clarify a few things – I did not say because of this study but “with” this study, meaning that this study with all the other historical and medical evidence, I think we can confidently conclude that Morgellons is not a new pathological entity. New evidence is always welcome, but unlikely to change that conclusion.
Of course there are weaknesses to this study. I do not think any of them are fatal. This was a descriptive study and if Morgellons existed it is still likely that some of the study subjects would have revealed some new pathological findings. The complete absence of that is still very damning to the Morgellons hypothesis.
I agree that not all patients self-labeled with Morgellons have a delusional disorder. Now that the concept of Morgellons is out there it will be an attractor to any patients with undiagnosed similar symptoms. Just like many patients with unexplained neurological symptoms gravitate to Lyme disease, because that is the available diagnosis. I also agree that some patients who now fall into this garbage pail have a primary skin disease (like myxedema) with secondary excoriation and embedded environmental fibers.
I am also not surprised some some doctors too quickly settle on a diagnosis of delusion or psychogenic illness. I see that myself in patients referred to me, and warn my residents against that trap.
None of this, however, means that Morgellons is a real pathological entity. It is all compatible with the conclusion that Morgellons is an invented concept, not based on any real disease. That as awareness of this idea increases it will attract a widening scope of patients.
Also, while our evidence is imperfect (which it always is) we can say that at present there is no compelling evidence for Morgellons being a distinct pathophysiological entity. The burden of proof is on those who claim Morgellons should be considered a new disease to give evidence, and they have not met that burden.
To Steven Novella,
You are obviously suffering from DODOP: Delusions of delusions of parasitosis.
Better find help. Take a look here:
http://www.dovepress.com/articles.php?article_id=8655