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

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.

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

I think we were both joking (note the smilies)
I enjoy reading your posts.

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.

There’s no flies on you.

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.