Wednesday, June 24, 2015

Sound familiar?

In late March, the singer Joni Mitchell was found unconscious at home and rushed to a Los Angeles hospital. In celebrity-obsessed Tinseltown, this was front-page news.

Fortunately, Mitchell recovered quite rapidly, but her hospitalization brought to mainstream attention a hitherto obscure ailment that has been dubbed "Morgellons disease." Sufferers report intense itching, a sensation that something is crawling under their skin, and lesions that will not heal, and that fibers extrude from their sores. Often, these mysterious chronic symptoms are accompanied by listlessness, chronic fatigue, and problems with memory and concentration.

Middle-aged white women seem particularly prone to the condition, and among those afflicted with it, the usual suspects are invoked to explain what is going on: an autoimmune disease; Lyme disease; environmental pollution; viral infections; or that all-purpose bogey that circulates in some circles, the side effects of vaccines...

The researchers could find no evidence of bacterial, fungal, or parasitic infection, and concluded that Morgellons was instead a psychiatric disorder, "similar to more commonly recognized conditions, such as delusional infestation" (an unshakeable yet erroneous delusion that one's skin is infested with bugs or parasites). The CDC pronounced the issue closed as far as it was concerned, archived the study for historical purposes, and declined to take matters any further.

The Morgellons community has not been amused, to put it mildly. They denounce the medical establishment in harsh terms (a representative headline is "CDC Creeps Formally Call Morgellons An Hallucination"), and many invoke conspiracy theories to explain findings they cannot accept. The idea that they suffer from a psychiatric condition, not a "real" physical illness, is anathema to them, and websites have proliferated to advance the cause.

Victims travel from doctor to doctor seeking validation that their condition is "real." A handful of physicians have accepted their claims and are embraced by the community, who rush to be treated by them and to cite their opinions—the only problem being that some proffer antifungal therapies and others antibacterial or antiparasitic pills, whereas still others urge a regimen of "natural" foods and detoxification via the wonders of colonic irrigation. Adding to the sense of confusion, these medics' theories of what precisely is organically wrong run the gamut, with their only common feature being an insistence that the disease has organic roots...

Morgellons disease has no characteristic laboratory abnormalities, suggesting that it is a form of psychiatric disorder. No obvious and uncontested biochemical or metabolic abnormalities correspond to patients' subjective symptoms. Nor does this condition correspond to any known neurologic disorder. Sufferers complain of muscle pain, persistent headaches, unrefreshing sleep, sore joints and throats, impaired memory and generalized malaise, not to mention impaired ability to think and to concentrate—and even this extensive list fails to include the full panoply of symptoms some patients experience.

What are we to make of it all? It is clear what those complaining of this syndrome want. Bitterly, the fatigued denounce their critics, the worst-placed rattling their wheelchairs in lieu of shaking their fists, accusing doctors of being "lamentably ignorant of the most basic facts of the disease." Proudly they rededicate themselves to what one of the targets of their ire, the British psychiatrist Sir Simon Wessely, has suggested that they consider: "the long uphill battle against ignorance and inertia."

Pesticides, hormones, chemicals, bacteria, viruses: Something must surely be responsible for these patients' suffering, and if modern medicine pronounces itself unable to oblige with a physical account of their troubles and proposes to ship them off to the tender mercies of the psychiatric profession, then they are off elsewhere. Off to self-help or to holistic practitioners, who are happy to display more sympathy and faith in the physical reality of their disorder, and to link it to the perils of civilization, only this time in the guise of a poisoned modern environment. Off to online support groups, where they can multiply their tales of woe and sense of grievance.

The verbally and sometimes (ironic as that would be) almost physically violent response of many of these patients to the suggestion that their symptoms are psychosomatic, or "all in their heads," is impossible to miss. Those who question their insistence that their disease is "real"—that is, rooted in the body—are deluged with abuse.

Wessely, for example, who was last year's president of Britain's Royal College of Psychiatrists, once worked extensively on chronic fatigue syndrome. Although he was willing to consider the hypothesis that viral or other unknown infections might initially trigger the disease, he proclaimed that psychological and social factors were far more important in perpetuating it, and that it largely resulted from dysfunctional illness beliefs and coping behaviors. His reward was to be inundated with abuse and personal attacks, even threats on his life. His mail has had to be X-rayed, and at times he has had police protection. Not entirely surprisingly, he has ceased further research on the subject.

Dubbed by the tabloids "the most hated man in Britain," Wessely's experiences are testimony to how desperately many of the afflicted want a neurologic diagnosis. That diagnosis will validate the reality of their disorder, and legitimize their suffering. But the neurologists who have grown to professional maturity in the post-Charcot world evince little or no interest in their troubles. Pausing only long enough, in the most plausible of cases, to subject them to batteries of tests and scans before pronouncing them physically normal, they suggest these nuisances go to see a shrink. That, as we have seen, is the last thing these patients want.


No comments:

Post a Comment