Blog: Chronic Experts
by InvisiGyrl

OSLER'S WEB - Author Hillary Johnson

HILLARY JOHNSON TALKS ABOUT CHRONIC FATIGUE SYNDROME AND HER NEW BOOK, Osler's Web

Date:   3/2/2005 1:25:49 PM   ( 16 y ) ... viewed 4025 times

Is chronic fatigue syndrome (CFS) an illness made up by emotionally troubled people, or is it a legitimate medical illness?

Yes, it is absolutely a legitimate illness. In fact, studies show that CFS is among the most severe of all medical diseases known to man. In the last decade, there have been an abundance of scientific studies that prove CFS carries with it a large range of immunological abnormalities. In addition, scientists have shown that the disease causes significant brain problems, in the form of multiple small anatomical holes in the brain with concurrent I.Q. losses. Cognitive--or thinking--problems, including short- and long-term mem ory loss, inability to perform math calculations and to appropriately "process" visual-spatial relationships are just some of the problems CFS sufferers must cope with on a daily basis. Most recently, in 1995, cardiologists at Johns Hopkins demonstrated that CFS sufferers have a brain defect that results in abnormally low blood pressure and low blood volume throughout their bodies.

Finally, although CFS has been repeatedly dismissed as a "yuppie disease," some studies show that the hardest hit segments of the population are blue collar workers and the poor. This disease does not respect class lines--everyone is at risk, including teenagers and even very young children.

If CFS is for real, why does it get such a bad rap? Why do people think it's just a condition of lazy people and malingerers?

The biggest single problem is the name, which not only fails to describe the severity of the disease but which actually inspires hostility toward the sufferer. People with CFS cannot get well merely by getting more sleep, or, conversely, by exercising more. As a matter of fact, telling CFS patients to force themselves to "go out and get the muscles working" is about the worst prescription; vigorous exercise only exacerbates the symptoms.

You say CFS is more serious than the name implies. What do you mean?

"Fatigue" is a most inadequate word in this case. There are elite-class marathon cyclists with this disease who can no longer walk to the corner; there are previously fit adults with CFS who are so weak they must shower while seated on lawn chairs. Many CFS sufferers are confined to wheelchairs, or to their beds. Once caught in the grip of this disease, there are days when brushing your teeth or raising a glass of water to your lips requires effort tantamount to pushing a boulder up a mountain. Most seriously, intellectual abilities are adversely affected. Commonly, the I.Q.s of CFS patients fall, sometimes dramatically. Severely ill CFS patients have all the symptoms of viral encephalopathy, including "ataxia," which means they cannot walk unaided because their brain and their limbs aren't communicating.

What have the federal health agencies been doing about this problem?

In 1984-85, a large number of people living in Incline Village, Nevada, were devastated by a mysterious, debilitating disease, now known to be Chronic Fatigue Syndrome. After a cursory investigation of the outbreak, the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) have made little effort to aggressively research the disease. It was not until 1995--ten years later--that scientists at the CDC gave CFS a "Priority 1" listing among their "New and Reemerging Infectious Diseases" category, thus officially recognizing it as a bona fide disease. Despite including CFS in this category, these agencies continue to insist there is no evidence that CFS is infectious.

Is CFS contagious?

There is ample evidence for contagion. Over the last decade, scores of cluster outbreaks of CFS have been reported to the Centers for Disease Control from all over the country. A "cluster" is a sudden outbreak among a group of people who are connected to one another by place of work or residence. These include an outbreak among children in a small, upstate New York town called Lyndonville, an outbreak in a Nevada desert town called Yerington, and an outbreak among policemen in Spokane, Washington. In a 1992 research paper on the Nevada outbreak, Harvard researchers pointed out that there was enough evidence to "suggest the possibility of an infectious agent transmissible by casual contact."

Is there evidence for contagion outside these so-called "cluster epidemics?"

Anecdotal reports from doctors who have specialized in the care of people with CFS report that some proportion of their patients come down with CFS after blood transfusions. A nurse who worked in a CFS-dedicated clinic acquired the disease after accidentally sticking herself with a needle used to draw blood from a CFS patient. There are also studies that suggest that the disease spreads among families--from spouse to spouse, parent to child, and sibling to sibling. Pediatrician David Bell found that, among families in the Lyndonville epidemic, the risk of acquiring CFS was greatly increased--by more than 50 percent--if at least one member of the family already suffered from the disease. In several Lydonville families, every member eventually fell ill.

If this is true, why have our federal health agencies failed to take this seriously?

There are several reasons. First, these agencies have not done their own studies on CFS transmission, and they typically have disdain for the studies performed by independent investigators. In addition, the government's primary CFS investigator at the NIH, Stephen Straus, has continually suggested the disease is a psychiatric problem, not a physical one, and he routinely discounts the research of those scientists who demonstrate otherwise. Finally, clinical expertise is paramount when attempting to understand new and emerging diseases, but, unfortunately, few researchers at the federal agencies are clinically oriented. They have generally shunned the observations of those clinicians with significant expertise in CFS, and this arrogance and misplaced pride on their part has served to harm patients.

How many people actually have CFS?

The best prevalence estimate was reported recently by a Harvard research team, who believed approximately two million Americans are suffering from this disease. That's four times as many as have multiple sclerosis. The Harvard group suggested an attack rate of 300 for every 100,000 Americans, a phenomenal number for such a disabling illness. During the height of the polio epidemic, in 1953, the attack rate of paralytic polio was 20 per 100,000 Americans.

How long has CFS been around?

CFS appears to be either a new disease entirely, arising concurrently with the AIDS epidemic, or else a much larger and more widespread outbreak of a disease that occurred in rare and isolated outbreaks in the 1930s, 1940s, and 1950s. The clinical descriptions of that older disease, which was called "epidemic neuromyasthenia," are similar in many ways to the malady the government today calls Chronic Fatigue Syndrome.

What have researchers learned about the source of the symptoms?

One of the earliest discoveries about CFS was that the immune system is dysfunctional. Later, researchers learned that approximately 80 percent of sufferers have multiple tiny, pencil-point sized lesions in their brain. More recently, sophisticated brain imaging techniques have revealed that the brain is damaged in this disease, not only from a physical standpoint, but also from a physiological standpoint--that is, the brain's functions are disordered: metabolism is abnormal, and there are regions of the brain that are not receiving adequate levels of blood.

Why is it that people with CFS don't appear to be ill?

The most severely ill CFS sufferers actually do look terribly ill; it's just that they are rarely seen because they are either hospitalized or home-bound. The more mainstream CFS sufferers commonly gain weight, remain coherent, and are able to sit upright and walk short distances--thus, on the surface, they don't fit the stereotype of the wasted, hollow-eyed sick person. You almost have to live with someone who has CFS to really understand the crippling impact of the disease. The CFS sufferer you encounter in the grocery store will probably have to spend the next day or next week in bed recovering from their excursion.

Is CFS an epidemic?

An epidemic is defined as an unusual occurrence of disease. What is so remarkable and disturbing about this one is that it is an epidemic hiding in plain sight. Despite clear evidence that CFS is an epidemic, the government health agencies responsible for tracking and curbing disease outbreaks have continually minimized this threat with bland reassurances to the public.

What is the evidence you refer to?

A few examples: I interviewed more than 500 doctors and bio-medical researchers in depth on this subject; most indicated to me that CFS was an entirely new and rapidly growing phenomenon in their clinical practices and research labs. In 1994, the largest carrier of private disability insurance in the country reported that CFS had been the fastest rising disability claim filed by both men and women in the previous five years. In addition, informal surveys suggest most people who suffer from CFS fell ill in the peak epidemic years of 1985-1990. The public's inquiries to the Centers for Disease Control for information about CFS have been so voluminous that, by the late 1980s, the agency was forced to hire additional staff to respond. In 1989, when such calls exceeded one thousand a month, they began to outnumber queries about AIDS ; by 1990, such calls numbered two thousand a month. Inquiries about CFS have for some years surpassed those about AIDS at the National Institutes of Health, as well. Finally, there are literally hundreds of support groups around the country--eighty of them in California, alone--with memberships totaling in the tens of thousands. Hardly any of these groups existed before 1986.

How long does CFS last?

Studies show full recovery is a rare event--somewhere in the 4 to 8 percent range. After five years, chances for full recovery are virtually nil. Many if not most CFS patients do get better over time--although "time" in this case means years. A proportion of CFS sufferers never improve, and some deteriorate. Doctors who see large numbers of CFS patients in their practices consider suicide to be the most common cause of death among those patients who fail to see improvement or, in fact, deteriorate.

How did you get interested in this subject?

In 1986, I fell ill with CFS myself. I had been a journalist all my professional life and was fascinated to learn that my problem was shared by hundreds of thousands of others. I wrote an article about the phenomenon for Rolling Stone magazine, where I was contributing editor, and a book contract followed. My experience with CFS has been like that of any other typical sufferer. Certainly, it is one reason I spent nine years writing a book that, had I been well, I probably could have written in three. The analogy would be the old man who walks to the post office every week or so for his mail--he gets there, but it takes him four hours instead of twenty minutes. I've adjusted to the problem and have learned to live with it. The great drama for me now is the fact that, ten years after the Nevada epidemic, there are, conservatively, two million people just like me, and that they have been forced to make the same adjustments in their lives, to a greater or lesser degree. At this stage, I think the question we should be asking is: Why have our federal health agencies been so cavalier in their handling of a disease that is so clearly a public health crisis?

THE PLAYERS IN THE CHRONIC FATIGUE SYNDROME EPIDEMIC, AS FEATURED IN OSLER'S WEB

PAUL CHENEY-- A medical doctor with a Ph.D. in nuclear physics from Duke University, Cheney brought a physicist's ebullient inquisitiveness to the epidemic facing him in the affluent resort town of Incline Village, Nevada, in 1985. For the next ten years, Cheney pursued the mysteries of the disease with an intellectual passion that brought him into the conference rooms of the Centers for Disease Control, the National Institutes of Health, the prestigious Wistar Institute of Philadelphia, and to the lecterns of scientific meetings as far away as Rome and Kyoto.

DANIEL PETERSON-- A laconic, independent-minded Midwesterner who was a partner, along with Paul Cheney, in the sole internal medicine practice in Incline Village when an epidemic of CFS hit there. While his partner pursued the pathogen that was causing the disease, Peterson, a clinician to his core, devoted years to the study of Ampligen--a drug that diminished the effects of the disease among many sufferers--only to watch the Food and Drug Administration quash further trials of Ampligen in 1991.

ELAINE DeFREITAS-- An initially skeptical scientist who tried to deflect Paul Cheney's overtures to collaborate with him in his search for the cause of CFS. DeFreitas eventually turned her formidable intellect and the resources available to her at the Wistar Institute toward seeking the viral agent behind CFS. Although she eventually found fragments of a novel retrovirus in CFS sufferers, the CDC could not reproduce her work. DeFreitas insists (and agency scientists concede) that government researchers never followed her complicated protocol for finding the virus.

DAVID BELL-- A Harvard-educated pediatrician whose life and practice in the tiny village of Lyndonville, New York (pop. 920), changed forever when an outbreak of CFS occurred among his young patients in 1985. In 1989, Bell joined the secret collaboration between Paul Cheney and Elaine DeFreitas, supplying hundreds of blood samples from the children's epidemic of Lyndonville to the Wistar scientist.

WALTER GUNN-- A reluctant whistle-blower whose assignment as principal investigator into Chronic Fatigue Syndrome at the CDC thrust him into conflict with his colleagues when he suspected his superiors of misappropriating money provided by Congress to study the disease. The twenty-year agency veteran, who continues to support the CDC as an institution, took early retirement in 1991 in order to pursue his investigations into CFS independent of government scientists he considered too biased to conduct fair research.

STEPHEN STRAUS-- A researcher at the National Institute of Allergy and Infectious Diseases (a division of the National Institutes of Health) who, in 1985, was one of the first scientists to describe CFS in a major medical journal. By 1989, Straus had undergone a sea change in his view of the disease, eventually becoming the chief architect of the "psychoneurotic" theory of CFS, a view he has barely modified over the course of the last seven years. Though he has been reviled by patient activists, Straus continues to be the most influential scientist working in the field by virtue of his NIH appointment.

WILLIAM CARTER-- A scientist and co-inventor of Ampligen, an immune-modulating drug. HEM Pharmaceutical's multi-million dollar Ampligen clinical trial on ninety-two CFS sufferers demonstrated that the most severe effects of the disease could be reversed in a majority of sufferers. Carter's appeal to the Food and Drug Administration in 1991 for the opportunity to conduct expanded clinical trials was brushed off.

MARC IVERSON-- At 27, the youngest vice president of Barclays America; at 28, an invalid with a disease no one around him believed was real. After his illness was diagnosed as "psychiatric" by the Mayo Clinic and Duke University, Iverson founded, in 1987, what would become the largest national CFS patient organization.

MAYHUGH HORNE-- One of Pan Am's most experienced international pilots who came down with the disease while training to fly the Airbus in Toulouse, France, in 1984. Despite his severely disturbed cognitive abilities--he was unable to complete a pre-flight cockpit check, and crash landed on flight simulator tests--Pan Am refused to acknowledge Horne's illness and encouraged him to resume piloting the 747s he flew from Miami to South American cities. Eventually, Horne grounded himself; he is living on disability payments from the Social Security Administration.

NANCY KAISER-- A housewife and former golf-enthusiast who, after ten years of severe illness, became "Patient 00"--the first CFS sufferer to receive Ampligen. The drug raised Kaiser's I.Q. from its depressed level of 85 to 135 and restored her ability to function normally--even to play golf. When the FDA denied the manufacturer's application for expanded clinical trials, however, HEM took its operations to Europe, and American patients like Kaiser were cut off from their lifeline. Kaiser is once more bedridden.

EDWARD TAYLOR-- An independently wealthy Tulsa businessman and engineer who, when his wife Nancy was diagnosed with CFS in 1984, emerged as the most generous philanthropist in the CFS field, supplying researchers with the seed money necessary to amass preliminary data.

BLAKE EDWARDS-- The Pink Panther creator and spouse of Julie Andrews who fell ill with CFS while filming the Ted Danson vehicle "A Fine Mess" in 1983. Seven years later, after failing to recover, Edwards tried without success to rally the Hollywood community to provide financial support to independent researchers in the field.

JON KAPLAN-- Kaplan and Gary Holmes were the CDC representatives sent to Incline Village to investigate the epidemic, yet Kaplan was never able to cross the boundary of frank disbelief. He played a pivotal role in persuading his superiors at the federal agency that the outbreak was bogus--a "collusion between patients and doctors"--and unworthy of further pursuit, an achievement that set the tone for the federal response to the disease and its victims for the next decade.

SEYMOUR GRUFFERMAN-- A respected cancer epidemiologist whose career was tarnished when he began studying the relationship between CFS and cancer and the degree of contagion in the disease. In spite of his efforts, he has never been afforded public funds to pursue his preliminary findings of an increased cancer risk and infectiousness in the disease. He has called the government's posture on CFS "institutional sabotage in the broadest sense of the world."


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