WALL STREET JOURNAL
BLASTS CFS AGAIN

The advocates working on behalf of the Chronic Fatigue establishment of course have different complaints, most of them linked to problems obtaining disability benefits. That may soon change in a big and very expensive way. The Social Security Administration is now busy developing new policy guidelines that would make it much easier for people claiming to suffer from chronic fatigue to qualify for disability benefits.

A specialist within the Social Security Administration tells us that the Chronic Fatigue activists now attempting to establish the syndrome as a federal compensatory disability are a highly talented lobby -- vocal, adamant, many of them well-educated. If the activists are any measure, this source says, "there is a very strong obsessive component to this disorder." Obsessive or otherwise, the lobbying campaign to win federal payments support seems to be working.

There can be no doubt that some real disorder affects people suffering from what's known as Chronic Fatigue Syndrome. The question is what. The struggle between the cadres out agitating for official recognition of their ailment and the medical skeptics has run on for some time. Many physicians believe that psychiatric causes play a primary role in chronic fatigue. The advocates demanding enshrinement of CFS as a neurological disease, on the other hand, adamantly refuse to tolerate the suggestion that their affliction could have other than physical causes.

Dr. Thomas Bohr of the department of neurology at the Loma Linda University School of Medicine cites in Neurology magazine descriptions of the chaos that ensues when activists weigh in at Chronic Fatigue meetings held at the Centers for Disease Control. As one of the doctor's sources describes matters, at these meetings "travesty has replaced science."

Advice on how to press for recognition -- and benefits -- for Chronic Fatigue is not hard to come by. CFS organizations dispense lists of doctors who specialize in diagnosing the disorder, and whose help is, of course, important in the effort to obtain benefits. The newsletter for Chronic Fatigue Syndrome includes a section titled "Senate lobbying made easy!" and urges readers to make their voices heard because, as the instruction puts it, "we need to 'roar'."

Some Chronic Fatigue activists seemed to have taken this injunction literally when they took off after Princeton Professor Elaine Showalter, author of "Hystories: Hysterical Epidemics and Modern Media." Professor Showalter, it appears, had committed the unforgivable offense of suggesting that Chronic Fatigue was one of a number of contemporary epidemics, whose root cause was psychological -- mainly depression -- notwithstanding advocates' efforts to ascribe the symptoms to a mystery virus or other physical cause. Energized quarters of the Chronic Fatigue Syndrome community in turn responded by sending death threats and demanding to know what the author would say to people who denied the Holocaust had taken place.

Extremism of this kind of course doesn't speak for everyone involved in a cause, but it does tell us something about the deranged sense of victimization that now characterizes so much organized justice-seeking in our time. In the case of the Chronic Fatigue Syndrome lobby, as one medical skeptic refers to it, justice means disability payments. High-pressure lobbying has steamrollered much policy under the banner of justice in our time, but something more than mere justice is at stake here. If the Social Security Administration is preparing to pour out billions of dollars for this problem, it deserves a much broader hearing and debate.

The following replies were published in the Wall Street Journal's Letters to the Editor column on Thursday, January 7, 1999, page A11.

In response to your Dec. 23 editorial "Chronic Disability Payments": Our organization is deeply concerned that yet again you have unjustly depicted patients as demanding, paranoid malingerers looking for a handout. Disability insurance is not a social welfare program, but rather should be viewed as payments made in "good faith" to become available to the payee in time of need.

Should it be considered "extremist" or "fanatical" for these patients to "demand justice" in the form of access to diagnosis, treatment and benefits routinely accorded to other sick people? At this point there is no "high pressure lobbying" on there behalf; in fact, only one organization has a paid lobbyist, who actually does very little.

You concede that "some real disorder" affects CFS patients, but the "not knowing what it is" seems to negate its legitimacy. Historically, diagnoses have been made on sign-symptom complexes. Activists are clearly not "agitating for recognition of their illness," since CFS has been officially recognized since the publication of CDC's case definition in 1988.

While it is well established that psychiatric causes play a role in chronic fatigue, this is not the case with CFS. Unfortunately, Chronic Fatigue Syndrome, the illness, has repeatedly been confused with "chronic fatigue," the general symptom, which has generated much misinformation. Only a small percentage of patients whose primary complaint is chronic fatigue will fit the CDC's case definition for CFS. Former Assistant Secretary for Health Dr. Philip R. Lee has stated, "although we have not yet been able to fully describe the basis for CFS, nor do we fully understand the mechanisms of CFS, it is very real and it is not a figment of anyone's imagination."

This is the second CFS-related editorial that has referred to Prof. Elaine Showalter to prove its point, rather than the numerous established, well-credentialled authorities on the illness. Indeed, "travesty has replaced science" when English professors promoting pop psychology are viewed as experts, since analysis of medicine requires a scientific background.

JILL McLAUGHLIN
Executive Director
NCF, Inc.
Needham, Mass.

I was an engineer with a job I loved: I was a wife with a husband I loved (and still do); I was a hotline volunteer, a league volleyball player, and I traveled extensively for work and pleasure. I was a happy, active 42-year-old. On March 12, 1993, I woke up with the "flu" and my life has been altered ever since. I have flu-like symptoms continually, mental confusion, memory loss, extreme fatigue, sever headaches, etc. I have been unable to work. This is not depression. Nor is this the portrait of a deadbeat.

KAREN S. EBLE
Huntingdon Valley, Pa.

For people like me, an ex-Navy SEAL forced into early retirement and condemned to spend 20 hours a day in bed, there is no doubt among my doctors that I am sick. The question is, what is this phantom disease with no cause and no cure? Until we come up with an answer, I am stuck with the unfortunate label of Chronic Fatigue Syndrome.

JOHN A. NASH
Lt. Cmdr., U.S. Navy (retired)

I take from reading your editorial that over the past 15 years about a half-million people have engaged in a conspiracy to have nonexistent (but measurable) ailments and being unable to work for the sole purpose of defrauding Social Security and getting rich off your taxes. The things you newspaper guys come up with.

While there is certainly controversy surrounding CFS and much to be learned about it, the claim that sufferers are simply having "hysteria" does not add up when weighed against the clinical evidence of physical abnormalities. Many diseases were once widely claimed by the medical community to be "mass hysteria" until sufficient research was done to find the real cause.

DON SLEFFEL
Wichita, Kan.

About every two years you run roughly the same sneering editorial on CFIDS, a devastating disease, probably neurological in origin, that has disabled millions of Americans. Why this irrational animus on your part? We need responsible journalism, even from conservative newspapers such as your own, not hysterical, misinformed attacks.

NAOMI WEISSTEIN, PH.D.
Professor of Psychology and Neuroscience
State University of New York at Buffalo
Buffalo, N.Y.

I developed CFS eight years ago and spent about one-fifth of my net, yearly, to treat various symptoms so that I could keep my job. I have multiple system dysfunctions that have all been verified by experts in each particular field. Despite my efforts, I was forced into retirement this year. In the past 10 years five close friends have become afflicted with CFS. All of us have struggled to keep our jobs; those of us who have lost them are striving to do what we can to help ourselves. Please try to do some serious research before you define us as a bunch of bums looking for a free lunch.

GEORGE WAGNER
Reno, Nev.

CFS is not, as you imply, all in the minds of a few hysterical people, nor is it merely primary depression. A look at the NIH guidelines for CFS and for depression reveal marked differences between the two. And there is a growing body of peer-reviewed research on CFS documenting abnormalities in multiple body systems, such as the immune, endocrine and central nervous system. One promising area of research involves a significant immune system abnormality in an anti-viral pathway: up to 80% of patients diagnosed with CFS have tested positive for this abnormality.

TRISH MELROSE
Louisville, Colo.

Before October 1995 I was working full time in human services, teaching self-defense classes at a local university, and leading a full social and athletic life as befits a 25-year-old woman. Since that time I have been unable to work, go to school, do my own cleaning or grocery shopping, or even go to movies with friends.

You suggest CFS is primarily a psychiatric disorder. In my case this is not true, and the medical evidence backs me up. A blood test confirms I have an auto-immune system dysfunction called Hashimoto's syndrome, which affects the thyroid. Thyroid abnormalities are found in one-third of women with CFS. I also have low blood pressure and an associated condition called Neurally-Mediated Hypotension (NMH), a disorder of the brain wherein the brain "miscommunicates" with the heart, which can cause dizziness, fainting and nausea. Researchers at John's Hopkins have found NMH in a large percentage of people with CFS.

SHARON WACHSLER
Shelburne Falls, Mass.