The press and government agencies ally to shine a disproportionate amount of publicity on false and improbable medical ideas. (Danger: Congressmen and reporters at work.)
The latest was a press release from either the Centers for Disease Control (and prevention? – I’ll get to the “prevention” part later,) or from Kaiser-Permanente Medical Group. Three Bay Area newspapers carried simultaneous articles. The articles announced a new, $338,000 CDC/Permanente study of something they call “Morgellon’s disease.” I say they call it that because what they are describing is not what was originally described as “Morgellon’s,” but what is most likely a form of somatiform illness – delusional parasitosis, or neurodermatitis.
What is Morgellon’s and why is CDC funding Kaiser/Permanente with $338,000 to study it? I was never taught about anything called Morgellon’s, and althoughI had practiced medicine for forty years, I still had not known of it until several years ago when a group of affected San Francisco patients and R L Stricker MD, were reported as having a number of cases of it.
It turns out that in 2001, a South Carolina biologist named Mary Leitao, mother of a young son who complained of painful, itching skin lesions, somehow found reference to an obscure report of a disorder describd by a person named Morgellon from 17th century France. A drawing from that period or later showed a skin opening with a sizeable wormlike object protruding from it. From the picture, the mother proposed her son had a form of that disorder, and she named it Morgellon’s. No such disorder was known to exist in modern times.
In 2006, newspapers reported that SF’s Dr. Stricker and another physician had accumulated increasing numbers of patients complaining of similar symptoms. The Bay Area, Los Angeles, Florida and a few other areas became centers of these cases, but then reports began coming from UK, Australia, and Canada. No specific diagnosis could be made on these people, whose skin lesions they reported exuded fine threads of black, blue, red, or white material. No constant bacterial cultures were found, but the physicians treated patients with antibiotics, nevertheless. They claim that they found high incidence of antibodies to the bacterial agent of Lyme disease. The sources of the pieces of fine thread could not be identified, but suspicions were that they came from clothing and other materials, rubbed into the breaks in the skin, produced by scratching.
Cases accumulated world-wide, most reports came from English speaking countries. Dermatologists recognized the paients as having “delusional parasitosis,” and treated them with anti-depressants on the assumtion of a somatiform reaction to anxiety or depression.
If this all sounds familiar, it should. A similar phenomenon in the mid-1980s began at South Lake Tahoe when a single internist claimed that scores of people accumulated in his practice, all of whom reported chronic fatigue, mental fogginess, muscle aches, and other symptoms but with no physical findings. (Ask any internist or family practitioner what percent of patients have those symptoms.) That was the germ of the chronic fatigue syndrome epidemic that resulted when millions of people who were feeling tired or depressed suddenly realized they could have a real disease, and bandwaggoned together to form a mass sociogenic illness of unprecedented volume. Newsweek and other news sources reported the problem as a real organic disease, estimating some 2 million cases in ther US alone. Curiously, no such masses accumulated in most other countries. CDC is still “looking into it” spending millions of dollars on what has been historically established as a mass delusion.
The late Stephen Straus made his reputation when assigned to lead the NIH investigation into chronic fatigue, leading to his eventual appointment as the last Director of the National Center for Complementary and Alternative Medicine. (He never solved the “problem” but added to the confusion by finding non-specific blood pressure and other changes in CFS patients.)
A characteristic of episodic, localized sociogenic illesses – sick building syndrome, schoolgirl fainting, etc. – is that they spread by line of sight. Interestingly, this current epidemic spreads locally via a line of sight surrogate – local TV reports and newspaper columns, and that the predominant reported early centers were all in English speaking countries.
The likelihood of “Morgellon’s” being an organic disease – bacterial, viral, or auto-immune – is vanishingly small. Physical symptoms like itching are almost universal, but kept below the horizon of awareness or concern, overwhelmed by the multiplicity of normal external stimuli, and suppressed through consciousness and other mechanisms. All one has to do is to concentrate on them or allow expression through depression or other causes, and they can magnify to frightening degrees. The physician sees nothing but the patient’s depression and concern, the patient rejects attempts at reassurance as disbelief or lack of understanding, accusations of professional neglect and conspiracies accumulate, reinforcing patient mistrust, and on it goes.
But criteria for diagnosis of emotional and psychological conditions are rarely physical or objective, so the CDC and Permanente experts will have severe credibility problems if they try to classify the problems as “functional” or somatiform. This “epidemic” is something best left on a lower key level, examined by physicians and other medical scientists in universities and academic institutions, not by government agencies, under pressure from members of Congress.
Now about that imaginary brake; a new radio commercial states that Mercedes Benz engineers recently experimented and determined that the passenger side “imaginary brake” that the passenger “uses” in certain urgent situations “does not work.” A clever ad, but also a real-life example of how imagination results in real organic responses, in this case motor rather than sensory – but quite real, nevertheless.
On to the prevention business. The CDC taking on this investigation and its probable unresolved ending a decade or more away, as with the NCCAM, gives legitimacy to the false idea that “there might be something there.” This unexpected consequence is likely to cause further spread of this imaginary disease and classic somatiform illness. All parties would benefit from reading Edward Shorter’s “From Paralysis to Fatigue.”
Dr. Steven Novella has also recently written a blog entry on Morgellons over at NeuroLogica Blog.