(CFS) is an inappropriate name for a very serious illness. It is clearly inappropriate since fatigue is associated with many chronic disorders and is common in the healthy population. The name does not reflect the severity or associated abnormalities of the syndrome, making patients easy candidates for dismissal by the medical profession, media, and the uninformed.

CFShuffPost

In Fireside Chat #2: A Personal Conversation With Author John Wear, John revealed he suffers from CFS:

John left sick from work on December 21, 2007 with what he thought was a routine illness. John’s illness soon became dramatically worse. By January 2008 he had no energy, and he was unable to walk more than a couple of hundred yards without resting for long periods of time afterwards.

Lab results from blood tests revealed that John had the Epstein Barr virus. However, the Epstein Barr virus was not the cause of his illness. He was eventually diagnosed with chronic fatigue syndrome (CFS), which is called myalgic encephalomyelitis in Canada and most European countries. There is no cure or proven treatment for this seriously debilitating illness.

John has gotten substantially better over time through the use of homeopathy, hyperbaric oxygen therapy, QEEG work, cranial sacral therapy, chiropractic care, massage therapy, ionic detox footbaths, Alphabiotics, colonics, and extensive supplementation. He is now able to read, write and enjoy the feedback from the articles posted on WearsWar.

John had never heard of CFS before he contracted this disease. After he was diagnosed with CFS, a medical doctor who thinks that CFS is a man-made disease gave him some books to read. The following is an article written by John which documents the history and severity of CFS.

See if you agree with the doctor’s opinion that CFS is a man-made disease.

 

A History of the Chronic Fatigue Syndrome Epidemic

Chronic fatigue syndrome (CFS) is an inappropriate name for a very serious illness. It is clearly inappropriate since fatigue is associated with many chronic disorders and is common in the healthy population. The name does not reflect the severity or associated abnormalities of the syndrome, making patients easy candidates for dismissal by the medical profession, media, and the uninformed.

Probably the best book ever written on CFS is Osler’s Web by Hillary Johnson. Osler’s Web tells the in-depth story of the first 10 years of the CFS epidemic–the personalities, the politics, and the extraordinary failure of our institutions to protect the public health. I will reference important selections from this book to show how our government covered-up the seriousness and prevalence of this greatly misunderstood illness.

 

Severity of CFS

Hennepin County, Minnesota infectious disease chief Dr. Philip Peterson sought to assess how bad of a disease was CFS. A majority of Peterson’s patients had been highly active, even athletic women in their 30s when they fell ill. Peterson states:

“Once they developed chronic fatigue syndrome, roughly half of our patients could walk no more than three blocks….Running was out for all the patients, but for most, even minor exercise, like walking uphill, was difficult….It does appear to be a chronic illness that does not resolve, as least as we’ve seen it.”

Peterson and his collaborators employed the Medical Outcome Study to measure the physical suffering of his patients. His CFS patients’ scores were compared with those of healthy people and people suffering from either myocardial infarction (heart attack) or rheumatoid arthritis. A score of 100 was “best health” on the study’s scale. Healthy people scored an average of 75, victims of rheumatoid arthritis scored in the high 40s range, and victims of myocardial infarction scored slightly lower. CFS patients in Peterson’s clinic scored an average of 16. As far as Peterson and his colleagues knew, such low scores had never been measured on the scale. Peterson needed to engage an artist to redesign the morbidity graph for the slide he presented at a medical conference, since no other category of patients had ever scored so low.[1]

Dr. Mark Loveless, a Portland infectious disease specialist, frequently administered another test of morbidity, the Karnofsky scale, to both his AIDS and CFS patients. The Karnofsky test was a time-honored measure of a patient’s ability to perform common daily activities like bathing and preparing meals. Even in their last week of life, many of Loveless’s AIDS victims scored higher on the Karnofsky test than did his CFS patients. Loveless noted in regard to CFS:

“This is the most frustrating medical condition I have ever taken care of. It is harder than HIV care, and that just grinds down the best of us.”[2]

Dr. Nancy Klimas, a Miami immunologist, was increasingly impressed by the clinical severity of CFS. She states: “[CFS patients] were profoundly tired. These aren’t normal folks.” Klimas split her time between a CFS clinic at the University of Miami and an AIDS clinic at the Miami Veterans hospital. Her young children could tell whether she had spent her day with CFS sufferers simply by reading her face when she walked through the door at night. The children would say, “It was a chronic fatigue day, Mommy” or “It was an AIDS day, Mommy.” The children could tell that CFS patients were harder for Klimas to deal with than her AIDS patients.[3]

Dr. Carol Jessop of San Francisco had 550 CFS patients by the summer of 1988. Speaking to health department officials, Jessop stated:

“I have in my ten years in practice seen a lot of things, and I think, besides the AIDS epidemic, this is the most absolutely devastating illness I’ve ever seen. People have not expired from this disease but have been known to commit suicide. The morbidity is untold. Jobs lost, relationships lost, suicides, and the cost to the health care system. Most of my patients are on disability…. It should be called ‘chronic devastation syndrome.’ ”[4]

Dr. Thomas English, a surgeon who had been suffering from CFS for four years and who realized his career was over because of the disease, published an article in the February 27, 1991, issue of the Journal of the American Medical Association. Dr. English described the sensations of CFS in a manner that he believed might stimulate empathy in his colleagues:

There is nothing in your experience in medical school, residency, or practice with its grueling hours and sleep deprivation that even approaches the fatigue that you feel with this illness (emphasis his). Fatigue is the most pathetically inadequate term.”[5]

 

CFS Becomes Epidemic

By 1987 CFS had reached epidemic proportions. The number of public inquiries about CFS at the National Institutes of Health (NIH) was second only to the public’s inquiries about AIDS. By the end of February 1988, the number of calls to the NIH from people seeking information about CFS was equal to the number of calls from the public about AIDS. By this time Judy Murphy of the National Institute of Allergy and Infectious Diseases reported that one-quarter of all calls from the public to her office pertained to CFS.[6]

The Centers for Disease Control (CDC) also received a huge number of inquiries about CFS. By 1990 the CDC was receiving more than 2,000 calls a month from the public requesting information about the disease. A year before, when the calls exceeded 1,000 a month, they began to outnumber inquiries about AIDS.[7]

Any doctor who wanted to specialize in CFS patients did not have to worry about having enough business. On the prospect of starting his own clinic in Charlotte, North Carolina specializing exclusively in CFS sufferers, Dr. Paul Cheney stated:

“I’m not afraid. I have no lack of patients. Right now we’re booked out until May with chronic fatigue syndrome patients. They keep coming out our ears. There are millions of them.”

Cheney also indicated that there was no indication that the CFS epidemic was waning.[8]

 

Government Response to CFS

Faced with this mounting crisis, what was the response of the NIH and CDC to solving the problem of CFS? As Hillary Johnson documents throughout her book, both agencies made a concerted effort to discredit the validity of the illness and withhold funding for research to find the cause of the disease. The actions of Dr. Stephen Straus, who was the head of the medical virology section of the National Institute of Allergy and Infectious Diseases with the NIH, were particularly reprehensible.

Dr. Straus originally believed that CFS was a legitimate illness. Based on a study of 23 CFS patients, Straus and another researcher postulated that the chronic malady might in fact be a form of immune dysfunction. Straus went so far as to suggest that Epstein-Barr virus activation was symptomatic of something more profound. The “apparent persistence of [Epstein-Barr] virus in these patients,” Straus wrote, “[may] represent an epiphenomenon…of immune impairment of an entirely distinct cause.”[9]

But between the winter of 1985 and the spring of 1988, something happened to Straus to provoke a radical reassessment of his views on CFS. In less than three years, Straus had come to the conclusion that the chronic ailment he described in 1985 was in fact a psychiatric disorder. Straus writes:

“It is impossible to completely dispel the notion that the chronic fatigue syndrome represents a psychoneurotic condition. On the contrary, there are observations that support the hypothesis.”

Straus goes on to conclude “ultimately, any hypothesis regarding the cause of the chronic fatigue syndrome must incorporate the psychopathology that accompanies and, in some cases, precedes it.” No hard scientific data supporting the claim of psychopathology, either preceding or accompanying the disease, were offered by Straus.[10]

Records from the CDC reveal that by the end of 1988 staff in Atlanta were highly focused on the possibility that CFS was actually a kind of character defect. One typical memo proposed “[organizing] an effective battery of psychological tests aimed at assessing possible roles of personality type” in the disease. Larry Schonberger, chief of the CDC’s Epidemiology Office with the Division of Viral and Rickettsial Diseases, took Straus’s observations as an encouraging sign that the resources of his epidemiology division might not have to be squandered on a non-disease after all.[11]

Dr. Straus had been effective in disseminating his newfound view of CFS throughout the press that year. On July 28, 1988, New York Times nutrition writer Jane Brody gave Straus a platform in the lay press in her widely syndicated health column. Straus explained that he and his colleagues at the NIH had “demonstrated that many patients were psychologically ‘different’ long before they developed the syndrome.” Brody added that Straus “described some patients as having been anxious and depressed with various neurotic symptoms for years before becoming ill.”[12]

Other media assets were used to discredit the validity of CFS. For example, on Sunday, July 17, 1988, the Times of London reported that myalgic encephalomyelitis, a.k.a. yuppie flu, was “all in the mind.” On Dec. 10, 1987, the TV show West 57th tackled CFS by implying that the controversial yuppie flu was probably all in the head.  The New England Journal used Straus’s acyclovir study to sound off on the disease in its lead editorial that week. “The Chronic Fatigue Syndrome–One Entity or Many?” written by Harvard infectious disease specialist Morton Swartz, concluded that the disorder was likely to have “multiple somatic and psychosomatic causes.”[13]

An article by Dr. Straus in the February 1989 issue of the Journal of Clinical Psychiatry stated that psychiatric illness was linked to CFS. To insure that Straus’s article would not go unnoticed by the popular press and the general public, a three-page press release was sent to approximately 500 reporters and news organizations around the country. The press release announced, in boldface capital letters, “LIFETIME HISTORY OF PSYCHIATRIC ILLNESS IN PEOPLE WITH CHRONIC FATIGUE SYNDROME.” Virtually every metropolitan newspaper in the country reported on Straus’s article in this obscure journal, cribbing their headlines from the press release. The public now had it on the highest authority that the disease was neither contagious nor deserving of significant taxpayer-supported research.[14]

In addition to numerous additional efforts to discredit CFS, Straus and others began to joke about the sufferers of CFS. In a lecture Straus elicited laughter when he glibly speculated about CFS sufferers,

“Maybe these are the individuals who, you know, they just don’t want to drive their BMW unless they feel up to it, and they need our help to get behind the wheel.”

Dr. Irving Salit made a speech on CFS in 1992 at the annual meeting of the Institute of Underwriters in Toronto. CFS expert Dr. Byron Hyde, who was invited to address the group and who heard Salit’s speech, later described it as “a ‘Saturday Night Live’ stand-up comedy routine with CFS patients as the brunt of the joke.”[15]

Dr. Straus still had not changed his views on CFS in 1994. He stated that there was no current evidence for chronic infection in CFS, and that the nearly 50 papers describing immunological aberrations in the disease are not reproducible. Straus reiterated his years-long propaganda about the high rate of preexisting psychiatric illness among CFS sufferers. Most remarkably, Straus concluded by blaming patients for at least some part of their dilemma. A significant portion of the symptomatology of the disease, Straus commented, was a result of poor sleep hygiene and failure to exercise.[16]

 

CFS Research Funds Difficult To Obtain

Scientists were having difficulty raising funds for CFS research. The University of Nevada’s proposal to study the spread of CFS in Nevada was rejected by the government after its submission in June 1988. Seven different grant proposals to study CFS were presented in 1988 to the National Institute of Allergy and Infectious Diseases; all were rejected. During the week of Feb. 9, 1989, an NIH panel met to consider the latest round of CFS grant proposals. The committee, a different group from the ad hoc committee of the previous year, reviewed two new proposals and three revisions. None of the grant proposals was approved for funding.[17]

Dr. Nancy Klimas by 1990 had tried and failed seven times to win federal support for her CFS research since the NIH’s first invitation to submit proposals in 1987. “I’ve tried from every angle,” Klimas said that year.

“The National Institutes of Health is funding sick dog research at a much higher level than they’re funding chronic fatigue syndrome research, and I think maybe they ought to refocus priorities.”[18]

Tom Sheridan, who had been a lobbyist for AIDS organizations for seven years, was recruited in 1991 to lobby for CFS. Sheridan was used to focusing his efforts on one primary goal for clients: acquiring more money for research. As a result of his experiences of the past year, however, Sheridan now realized that CFS presented a more complicated dynamic.

“This situation is actually…unique,” Sheridan admitted in a conversation that fall.

“I have told my clients: ‘I can go to Congress and get more money for the National Institutes of Health and the Centers for Disease Control. But before we ask Congress for money, let’s get an infrastructure in government that is helpful to you rather than hurtful. There is no point in asking government to spend money that will ultimately harm your goals. Your advocacy efforts have to be smartly done, and that may mean reforming institutions that are not working before you give them money.’ ”[19]

Tom Sheridan’s statements are supported by Hillary Johnson’s Acknowledgments section in Osler’s Web. Johnson states:

“Attorney Quinlan J. Shea Jr., formerly of the National Security Archive in Washington, D.C., and an expert in the Freedom of Information Act, lent his considerable expertise to my efforts to acquire documents from the government through FOIA. On my behalf, he met for long hours with NIH staff to negotiate the release of documents, and vigilantly monitored the government’s processing of records, without once abandoning his quick wit. Quin also took an active role in advising me on other crucial First Amendment issues that erupted during the course of reporting this book.”[20]

The NIH is an agency of the U.S. Federal Government responsible for programs designed to improve the health of the U.S. population. If the NIH was really attempting to serve in the public’s interest, why would Hillary Johnson have to hire an attorney to negotiate the release of documents with the NIH? The NIH should have nothing to hide as long as they were responsibly doing their job.

Dr. Straus also refused to release documents under two Freedom of Information requests. In violation of the federal Freedom of Information Act, Straus’s superiors at the agency did not force him to comply with either request even when assistant secretary of Health and Human Services James Mason instructed them to do so. If CFS was merely in the minds of a group of psychologically imbalanced people with a history of psychiatric problems, why would Straus refuse to disclose what his researchers were looking for and what they had found? It would seem that Straus would be eager to cooperate and disclose the information as required by law.[21]

 

Doctors Fight Government Position on CFS

The passion that marked discussion of CFS was intense, and more than one clinician drew the analogy of a holy war to describe the division over the disease in the medical community. Dr. Andrew Saxon delivered an address in which he said that CFS was “becoming a form of mass hysteria….What’s happened is we’ve really generated a social issue today.” Saxon went on to repeat the standard government line that the correct diagnosis for CFS was likely to be psychiatric–a diagnosis he urged his peers to render by default.

Australian Dr. John Dwyer challenged Saxon after his speech. Dwyer stated:

“There is clearly a pandemic of this sweeping around the world. I’m seeing people who literally cannot walk from one end of this hall to the other end of this hall without having to rest for four to eight hours. We see patients with quite gross impairments in concentration, people who had wonderful jobs that required great intellectual capacity, who are being reduced to being unable to work–”

Saxon stopped Dwyer and said that Dwyer obviously had a very small group of patients who may have some other disease. Dwyer shouted back:

“We don’t have a small group of patients. We’ve got hundreds of patients! Surely that’s the whole point! And my question to you is, don’t you think we should get an interested scientific group like this to work on a better case definition? Because I think there are hundreds of thousands of patients, and if we had a better case definition we could do some good science on this disease.”[22]

 

Our Government’s Legacy and Roll Call

Hillary Johnson’s book ends in 1994, but our government’s program of neglect and misrepresentation in regard to CFS still affects how CFS is viewed today. Despite protests from CFS sufferers, the euphemistic, benign-sounding name “chronic fatigue syndrome” continues today as the name to describe the disease. One psychologist well versed in standardized systems of evaluating the psychological import of words noted:

“ ‘Chronic fatigue syndrome’ has a real negative impact. The word ‘chronic’ is associated with chronic complainers, chronic whiners. And ‘fatigue’ is even worse.”

The government’s choice of names was so inept, in fact, that many observers came to view it as a deliberate attempt to defuse the potentially panic-inducing issue of the eruption of a life-altering infectious disease. “Chronic fatigue syndrome,” after all, hardly sounded catching.[24]

On Dec. 15, 1994, the CDC issued a revised case definition of CFS as misleading as its first.  By the CDC’s definition, CFS was less a discrete disease than it was a state at the extreme end of a continuum of fatigue. The result has been to discourage public demands to protect the public from CFS; fatigue, after all, is not contagious.[25]

Hillary Johnson ends her magnificent book with a Roll Call of the CFS sufferers mentioned in her book. All of the patients were in the late chronic stage of CFS, having fallen ill during the pandemic years of the middle to late 1980s. Most, though not all, reported improvement in the form of adaptation, having achieved a degree of forbearance and acceptance. Three of the CFS patients had died, one by suicide and another from colon cancer. The third to die was Susan Simon, a patient in Stephen Straus’s acyclovir trial, who died instantly when a truck collided with her motorized scooter on a New York City street in 1993. Simon had talked of suing Straus for malpractice prior to her death.[26]

 

Editor Comment: Please feel free to share this information far and wide if you believe it may help another person and their family.

 

[1] Johnson, Hillary, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, New York: Crown Publishers, Inc., 1996, p. 364.

[2] Ibid., pp. 364-365.

[3] Ibid., pp. 159, 365.

[4] Ibid., p. 273.

[5] Ibid., p. 461.

[6] Ibid., pp. 184, 253.

[7] Ibid., p. 368.

[8] Ibid.

[9] Ibid., pp. 21-22.

[10] Ibid., p. 260.

[11] Ibid., p. 261.

[12] Ibid., p. 278.

[13] Ibid., pp. 232, 277, 302.

[14] Ibid., p. 315.

[15] Ibid., pp. 171, 565-566.

[16] Ibid., pp. 684-685.

[17] Ibid., pp. 246, 250.

[18] Ibid., pp. 362-363.

[19] Ibid., p. 588.

[20] Ibid., p. ix.

[21] Ibid., p. 171.

[22] Ibid., pp. 324-325.

[23] Ibid., pp. 462-463.

[24] Ibid., p. 219.

[25] Ibid., p. 671.

[26] Ibid., pp. 686-696.

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