Nov 03 2008
One of my favorite TV series was Northern Exposure. I loved the characters and their individual and collective angst, amplified by the fact that they were all “trapped” in a small Alaskan town. In a way the town was one big extended family. The plot lines were also thoughtful and at times even intellectual.
My one quibble, which I just had to overlook (which is no big deal, since it was clearly fiction) was the show’s occasional flirtation with pseudoscience and mysticism. The writers dealt with it well, though, not shoving it down the audience’s throat, and it became part of the show’s charm.
One example was the character Mike Monroe (played by Anthony Edwards of Later ER fame) who fled civilization to the small town of Cicely because of his “multiple chemical sensitivity” or environmental sensitivity. Essentially, he believed he was allergic to everything, and so had to live in a “bubble” that was sealed from the outside world.
The show left it ambiguous whether or not Mike had a real hypersensitivity or his symptoms were all psychosomatic. Eventually he was encouraged to venture out into the world and was ultimately “cured” of his illness – whereby he left Cicely and joined Greenpeace.
In a case of life imitating art which was imitating life, a women from Allentown PA was just evicted from her “bubble” that she was using to escape her environmental sensitivity. The reason for the eviction has nothing to do with the questionable basis of her diagnosis – rather she and her husband failed to obtain proper permits and may be violating zoning laws.
Like Mike Monroe, Elizabeth Feudale-Bowes has been isolating herself in a sealed hypoallergenic room to treat her environmental sensitivity. She was diagnosed by Dr. William Rea from the Environmental Health Center in Dallas.
Environmental Sensitivity (or multiple chemical sensitivity – MCS) is not recognized as a legitimate illness. It was first proposed by Dr. Theron G. Randolph in the 1940s, who first thought that it was due to food, but later expanded the syndrome to include artificial chemicals in the environment.
Like most dubious diagnoses, MCS lacks a discrete clinical picture or any pathophysiological plausibility. Those who have the diagnosis typically have fatigue, non-specific pains, depression, irritability, and confusion. These are all non-specific symptoms and do not point to a specific physiological dysfunction or cause. They are also common symptoms of psychologically based syndromes.
In the last half century proponents of this diagnosis have failed to achieve any scientific credibility. They have not demonstrated that MCS exists as a discrete entity, that it can be reliably diagnosed, that there are any objective markers or underlying pathophysiology. In other words, they have demonstrated nothing to suggest that MCS actually exists.
There have been some scientific studies of MCS, but the results of these studies are consistent with the hypothesis that MCS is psychological. For example, Staudenmeyer et al challenged patients with the diagnosis of MCS in a blinded fashion with various environmental challenges (the control being clean air challenges). He found no difference between clean air challenges and a variety of chemical challenges.
This is a pattern we see repeated often. New ideas are proposed all the time in medicine, and most new ideas turn out to be wrong. Occasionally a new idea crops up that has a popular appeal (because it addresses a perceived need, like providing a diagnosis to those with non-specific symptoms) or that is backed by proponents that will not back down when the science does not go their way. These new but wrong ideas then take on a life of their own.
Proponents emerge who appear to have an almost religious belief in the new syndrome or treatment. They often begin treating patients according to this new belief prior to adequate scientific studies. The studies ultimately do get done, and when they are negative the result is to further marginalize acceptance of the now dubious claims. But the proponents are undeterred. Frauds and charlatans seem to be attracted to the fringe, so they come out of the woodwork looking for easy marks.
A medical subculture dedicated to this now-discredited notion emerges, with their own jargon, their own clinics, and their own treatments. The scientific community rejects the subculture, but in practice mostly just ignores it, and the subculture is happy to practice under the radar.
Occasionally individual practitioners may come under regulatory scrutiny – usually because some physician or organization learned about what was going on and reports them to the state. The questionable practitioners have figured out, however, how to deal with this situation. Since the science (as well as professional ethics) are against them, they make a political appeal. This bizarrely works.
That is exactly what Dr. William Rea did when he was reported for practicing substandard medicine. He wrote an open letter to his patients:
This letter is being sent to you so that we may provide information about a potential serious potential threat to your choice of medical care. To put it bluntly, there is currently an organized nation-wide effort to destroy the specialty of Environmental Medicine and to eliminate from practice physicians who diagnose and treat patients suffering from chemical sensitivities.
They have learned to press the “health care freedom” button. They will even try to get local representatives on their side to put pressure on the state board of health. They appeal to their patients who think they have been helped by the treatment (of course, this is a self-selective and unblinded group). Usually they can wiggle out of attempts at enforcing a standard of care.
In the last decade or so they have even learned to make preemptive strikes against regulation. They have successfully lobbied for so-called health care freedom laws in various states. These laws essentially say that the state cannot enforce the standard of care by acting against a practitioner’s license based solely what the practitioner is doing – whether or not it is science-based or meets any reasonable minimum standard.
Now charlatans are increasingly free to line their pockets with money from desperate patients without fear of pesky regulations, or having to defend their fringe activity with science or evidence.
There is also potential harm beyond financial. Patients who have symptoms that are psychologically based often focus on presumed physical causes. Their best hope of improvement is to get their focus off of physical ailments they do not have and to work on the underlying psychological issues. When a physician, however, validates their somatic delusions with a fake diagnosis, and then takes up their time and attention with a fake treatment, they are being deprived of the opportunity to pursue perhaps more effective and rational treatments.
The only hope to improve the situation is for citizens to demand that their state governments do their job and protect them against fraudulent health care. Education about the real issues is a start. Charlatans count on ignorance and apathy to ply their trade – so we can afford neither.
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