Nov 03 2008

Environmental Sensitivity

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Comments: 7

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:

Dear 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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7 responses so far

7 Responses to “Environmental Sensitivity”

  1. DeltaZon 03 Nov 2008 at 5:14 pm

    I do believe that most patients with “environmental sensitivity”
    are on the kookie side. There is one “orphaned” disorder which might have been the writer’s better choice to send
    Mike Monroe to an isolated place in Alaska. It characteristically shows aggravation of symptoms from multiple environmental stimuli. The condition is “mastocytosis” usually with dermatologic findings secondary to unrestrained histamine release. (urticaria pigmentosa or one other I can’t recall)

    One surgeon in our community suffered from this process, quit his work for months and went to the mountains, or maybe it was Canada, to escape local allergens and warm moist climate (as well as family and friends). This is a rare disorder with at least some pathologically identifiable characteristics, no known cure, and in this series of one was self limiting and remissed without known problems. Every rare and every kookie disorder has it’s website, and this one is no exception.. DZ

  2. daedalus2uon 03 Nov 2008 at 5:55 pm

    There is a potential physiological pathway that could be involved. Whether it is or not has not been established.

    Most xenobiotic chemicals are metabolized through the cytochrome P450 system. These enzymes are quite “uncoupled”, that is they normally produce considerable superoxide as a normal consequence of their normal activity. This superoxide is vectorally produced to the inside of the microsome the P450 enzyme is located in. Normally the P450 enzymes are inhibited by NO binding to the heme. To achieve high activity this NO must be removed, and this is one of the roles of the superoxide, to act as a positive feedback mechanism to robustly turn on those particular P450 enzymes in a time of need by lowering the NO level local to that microsome. Depending on the physiological state, this state of oxidative stress may be confined to the relevant microsome, or it may propagate to others.

    Low NO makes mast cells hypersensitive to degranulation. This is a “feature”, when an infection on the skin generates xenobiotic chemicals, proteases for example, they cleave xanthine oxidoreductase into xanthine oxidase where it then makes superoxide. This pulls down the NO level, mast cells become more sensitive and degranulate releasing (among other things) proteases that produce positive feedback.

    These same pathways can also be activated neurogenically. There could be a small reaction to some xenobiotic chemical (even some that are “natural), and then a conditioned psychogenic response amplifies the reaction and extends it even to chemicals that don’t activate the P450 system.

    Production of superoxide is one of the universal “stress responses”. That is one of the final common pathways of any type of “stress”, chemical, fear, anxiety, infection, fight or flight. It should be quite easy to condition someone to react by producing superoxide. That is what the politicians are trying to do for this election, condition voters to react with fear toward their opponent.

  3. Fizziziston 03 Nov 2008 at 8:15 pm

    Jeez this is like a priest going against science and performing an exorcism, though this is not as extreme as something like that, it is still of major concern to the science community and to people who actually have this problem and should be getting psychological treatment, not some kook fringe science treatment that they are getting now.

  4. jhson 03 Nov 2008 at 10:59 pm

    This essay a great example of your writing being accessible, informative, and persuasive. I have forwarded this to a couple of friends, and I finally broke down and registered an account here to say thanks.

    (And speaking of accessibility, I’ve often heard you talk about the deceptive practice of using technical jargon to confuse and bewilder, rather than to illuminate and educate. Is there a clear, concise term for this practice? Not to name names, but…)

  5. Claireon 04 Nov 2008 at 7:05 am

    Trying to be charitable, I have no doubt that people who claim to suffer from MCS/IES (idiopathic environmental sensitivities) experience real distress but I really, really wish they wouldn’t refer to themselves as being “allergic” when there is no medical evidence that this is the case. Knowing families – including my own – who have been (sometimes tragically) afflicted by the real thing, my worry is that these unjustified claims to be allergic to modern life can undermine public understanding of what allergy is and when it needs to be taken seriously. With modern medicine, awareness and vigilance, fatal outcomes are thankfully infrequent but avoidable tragedies can happen .

  6. clgoodon 17 Nov 2008 at 1:45 am

    jhs:

    …the deceptive practice of using technical jargon to confuse and bewilder, rather than to illuminate and educate. Is there a clear, concise term for this practice?

    I think there is a term for it.

  7. [...] generally considered “fake diseases”—CFS exists, but is horribly over-diagnosed. MCS probably doesn’t exist at all. E.s’ doctor discovered she had a virus called Epstein-Barr, which causes mononucleosis and [...]

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