I’m trying to understand “morgellons syndrome”. Based on Morgellons Research Foundation reports, there are a lot of people out there who believe they have this so-called disease. But what is it? I decided to dig deeper on the research end of things. I went to the MRF website, and to MedLine, looking for something, anything, to help me find out more about this problem. I must report that the science doesn’t look good for the morgie boosters.
First, there has been little legitimate research on morgellons as such. The CDC is doing an epidemiologic study to determine what, if anything, may actually exist.
The medical consensus is that so-called morgellons is a variant of delusions of parasitosis. It may be, however no case definition exists, and no central registry exists. Each case is treated on its own (and probably should be).
Since morgellons resembles in every way but name delusions of parasitosis, it is on the morgellons advocates that the burden of proof falls. If they wish to invoke a new diagnosis, they must have a definition, a way of distinguishing morgellons from DOP, and a reasonable hypothesis to investigate. So far, none of these has happened.
The dermatology literature has treated this phenomenon is a very sensible way. It has been recommended that patients’ feelings and sensations be validated, but that they be told the truth—that there is no evidence of infectious or otherwise primary dermatologic disease. It is sometimes recommended that patients be told that they have a problem with the sensory apparatus in their skin and nervous system, and that medications that act on the nervous system be used. This approach is quite rational, and atypical antipsychotic medications have been used successfully.
This is in marked contrast to the bizarre approach taken by the morgies. Their “research foundation” has preconceived notions of what is happening—they have formed a conclusion rather than a hypothesis. This is fatal to science.
If anyone is to take them seriously, they must focus on science. Define your hypothesized illness. Set up a study protocol. Find patients using your case definition. Find appropriate controls. Have other, independent researches attempt to replicate your findings.
At least one academic has been trying, but failing. Randy Wymore, one of the MRF’s scientists (OK, the only one) is trying to come up with some useful criteria to evaluate so-called morgellons syndrome. Unfortunately, not being a clinician, he’s a bit out of his depth.
In defining a disease, the signs and symptoms you use to identify a case should be unique to that disease, and sufficiently specific to separate out a “normal” person from one with the disease. It is not necessary to know the etiology (cause), but it is necessary to be able to point at a person and say, “Based on these unique criteria, this person has the disease.”
The terms used by Wymore are very un-medical, which doesn’t bode well for someone trying to gain legitimacy for a controversial syndrome. For example, he uses the terms “physical” and “mental” to group symptoms, something that a clinician would never do (“mental” being a vague, non-clinical term).
Morgellons is a multi-symptom disease that is just now starting to be researched and understood. It has a number primary symptoms:
- 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
- Short-term memory loss
- Attention Deficit, Bipolar or Obsessive-Compulsive disorders
- Impaired thought processing (brain fog)
- Depression and feelings of isolation
There are several problems with this description. First, how do you define “spontaneously erupting”? Given that one of the questions is regarding delusions of parasitosis, and that people with DOP pick and don’t realize it, there must be a high level of suspicion, and a dermatologist who can often tell an “outside job” from other rashes should probably evaluate all patients.
Sensations of “crawling” are very common in a variety of disorders.
Any “fibers” found, given that we all wear clothes, etc, are suspect. It is an extraordinary claim to say that fibers found in/on skin are endogenous and not transferred from everyday fabrics, so the level of proof needed is very high.
Fatigue is experienced by everyone. How do we quantify it?
“Mental” probably means psychological or psychiatric, but I’m not sure. Short-term memory loss is something measurable with available psychological tests, so that can be documented easily—common disorders that cause memory loss, such as dementia and depression must be ruled out before a new disorder is invoked.
ADHD, mood disorders, and OCD are common psychiatric diseases. To subsume them into the definition of another disease is a mistake. To call them co-morbid conditions would be interesting. The big problem is that most of the other symptoms described could actually be attributed to OCD, so how do we tease that out?
“Brain fog” is vague. In fact the symptoms and diseases listed under “mental” are a complete mess, in that they are intermixed inappropriately and don’t help distinguish “mogellons” from anything else.
Given that this definition is basically useless, research will be difficult. Under the “research” tab on his website, no specific projects are listed. As far as I can tell, the “leading morgellons researcher” doesn’t have any active research projects or publications (at least no relevant ones on PubMed).
“Morgellons” is a group of patients in search of a disease. So far, the disease does not exist, but the patients are suffering. Misleading them by labeling them with a syndrome with no known cause or treatments is shameful.