Guest blog by Erik Johnson
CFSers Snatch DEFEAT Right Out Of The Jaws of Victory
I described in “What Is CFS? – The Holy Grail” how Ted Van Zelst hatched a plan to use the spectacular Lake Tahoe outbreak to force the CDC into rethinking their attitude toward the “adult mono” of the early 1980’s.
By all accounts, the Tahoe outbreak didn’t precisely match the known clusters of EBV Syndrome, but that didn’t matter. Ted Van Zelst’s idea was to get a foot in the door. Once in, the discrepancies in one illness would have to be studied to understand the others.
There was enough in common between the illnesses that the Tahoe outbreak fit the published definition of CEBV Syndrome. However, Dr. Cheney and Dr. Peterson’s new tests by the Nichols lab pushed the boundaries of the Tahoe entity into new territory by showing that the same constellation of symptoms could exist even without the presence of EBV.
Stephen Straus was still hoping to sell his EBV-based “Neuroasthenia” fatigue illness to the 1987 Holmes committee by treating Tahoe as a possible subset – an aberration, or possibly unrelated to the adult mono. But the newly published “Holmes Study” handed out by Gary Holmes put Straus into a ballistic fit, as this clinched the deal that the Tahoe “HBLV (HHV6A) outbreak was the primary purpose of meeting…and that pushed EBV right off the table.
Dr. Byron Hyde recalled Straus’s reaction to the paper:
“He held a monologue that lasted at least two minutes. I thought he was having a nervous breakdown. He kept saying, ‘They’ve ruined me. What will my colleagues think? These goddamn patients!’ He seemed to be taking it personally, and talked as
if the patients had banded together to destroy him.
It has always amazed me that no one questions why Straus had such a violent reaction.
CFS advocates and “historians” assure me that “Straus WON. He got what he wanted. CFS was what STRAUS wanted the syndrome to be.
Gee. What a strange reaction for someone who just “won”
The reality is that STRAUS LOST. THAT is why he flew into a rage.
Straus’s “Neuroasthenia” was out.
The syndrome was going to be for the Lake Tahoe outbreak, which by now, Dr. Cheney had been calling “Chronic Fatigue Syndrome” as per Straus’s suggestion.
The demolition of the Straus-Jones faction threw the door wide open… but who was to rush in?
Hyde, Parish and Shelokov… had left.
A Brief History of Myalgic Encephalomyelitis and an Irreverent
History of Chronic Fatigue Syndrome
As presented at the London Conference of May 12, 2006 by Byron Hyde MD:
Many of the M.E. epidemics started out among children or students. This occurred in the 1936 Fond du Lac epidemic, the 1946 to 1949 Akureyri epidemics, the 1950 St Joseph Infirmary epidemic, the 1952 Middlesex epidemic, the 1955 Cumbria Street Children’s Hospital. It was not then surprising, that the Incline Village epidemic should also
start among students.
The Lake Tahoe Epidemic
The Lake Tahoe epidemic that started in August 1984 also started among students. In this case the epidemic began in a high school girls basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately.
Dr. Paul Cheney and Dr. Daniel Peterson were inundated by the number of rapidly developing cases of seriously ill patients and called for the Centre for Disease Control (CDC) in Atlanta for back up. Initially CDC did not appear to (be) very interested. Members of Congress were then called and CDC jumped to investigate. According to one of the principals who related the story to me, a crew headed by Dr. Gary Holmes from CDC came out to Incline Village from Atlanta, drew blood samples from the ill patients and spent much of the short remaining time in Lake Tahoe playing golf. It is possible that the CDC crew would have done a much more thorough investigation but they did not and this may have been due to the political forces that gathered steam.
Business Comes First
Reputedly, members of the business community whose commercial interests depended upon tourist trade and the seasonal ski business did not want news hitting television and other media that there was a devastating infectious disease running around Lake Tahoe. It would have cost the business community millions of dollars. Accordingly, I was told that pressure was then placed upon the congressmen to stop CDC from investigating this epidemic further or they would lose their jobs. And apparently, so it came to pass. There was little further investigation except for the sustained efforts of Dr Paul Cheney and
Dr Daniel Peterson. Reputedly, increasing negative pressure and threats were placed upon both of these physicians, sufficiently so that Dr Cheney eventually moved his family to South Carolina.
First International Symposium on Immunology and Pathogenesis of
Persistent Virus Infections.
Fast-forward to April 1987 and the First International Symposium on Immunology of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr. Carlos Lopez. At this meeting Dr. Gary Holms gave out his new paper, “A cluster of patients with a chronic mononucleosis like syndrome,” that had just been
published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987: 287:2297-2302)
The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren’t sure and suggested that further study be done. Stephen Straus who was apparently the NIH chief behind the Lake Tahoe investigation was sitting beside me at this symposium. When Dr. Holmes gave both Dr. Straus and myself the paper, Dr. Straus in a monolog to him reacted very negatively, stating that the patients had tricked him. I was amazed.
What did we know about M.E. in 1984 after the Lake Tahoe epidemic. The CDC investigators and the physicians of Lake Tahoe were dealing with a fast spreading infectious disease of a short one week or less incubation period. Obviously this was consistent with the epidemics of Myalgic Encephalomyelitis already documented in this brief history. Like the several epidemics noted that started with children or students, so did this. Like the patients in all of the epidemics discussed, the effects of the infection involved the Central Nervous System but unlike a stroke caused by an embolism, or malignancy, or arterial obstruction, the CNS involvement that occurred in these patients were not focal but consistent with a diffuse CNS injury.
In the Lake Tahoe epidemic as in the previous epidemics described, the type of Central Nervous System involvement was obviously of a more diffuse nature and the type of peripheral involvement that caused so many troubling symptoms in all these epidemics was consistent with a very low grade vasculitis (See Mercy San Juan Hospital Epidemic) or in many cases a classical radiculopathy (spinal nerve root involvement) or even a very low grade Guillain-Barre’ Syndrome as was described by Alberto Marinacci when he examined the Los Angeles County Hospital patients (See Dr Marinacci’s book Applied Electromyography. Lea & Febiger, 1968: Chapter 9). However, I should note that the mere mention of Guillain-Barre’ Syndrome drives many neurologists crazy. They say that GB is a severe disease that if not treated effectively may kill or leave the patient permanently disabled. However, all real diseases have a wide variety of penetration from so mild that they may be missed to, in some diseases, having potentially mortal consequences.
If we consider the Lake Tahoe epidemic alone we have the primary definitional determinant of Myalgic Encephalomyelitis.
The Lake Tahoe Epidemic represented an illness
a. With an acute onset.
b. With an incubation period of 4-7 days,
c. Occurring in both students and adults,
d. Involving the central nervous system in a diffuse, non focal manner,
e. The onset of a Raynaud’s disease along with a peripheral coldness, blanching and pain syndrome of fingers, hands and feet or significant postural hypotension or instability. A non-traumatic, acute onset of these two syndromes is consistent with an injury or a significant diffuse change in the autonomic physiology of the subcortical brain.
f. Rapidly developing flaccid muscle weakness with minimal effort or activity, (The Lake Tahoe epidemic was initially called Raggedy Anne Syndrome due to this finding.)
g. There were two illnesses, an acute viral like illness and a secondary persisting illness that in the more severe cases left permanent persisting sequelae.
h. With peripheral pain symptoms that have variable features resembling in some cases, a radiculopathy,, in some cases a vasculitis, and even a very low grade Guillain-Barre’.
Although the final terminology of conclusion “h” is subject to debate, are features “a to g” a very difficult set of conclusions to come to? I don’t think so. There is a consistent similarity of the Lake Tahoe epidemic patients to all of the previous epidemics mentioned in this short history and the many others that are documented in our textbook. The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
Yet retain these above Lake Tahoe Features in mind when we come to the first CDC definition that was largely based upon this very same Lake Tahoe epidemic illness.
1987: The first CDC definitional meeting
I have mentioned the April 1987, First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia hosted by the CDC and Dr. Carlos Lopez. At the termination of this meeting to discuss the creation of a definition
for this 1984 Lake Tahoe Raggedy Anne Illness that had appeared sporadically and in clusters in many areas of the United States and Canada.
Approximately 25 people showed up for the meeting. Included in the 25 physicians and scientists were Dr. Alexis Shelokov, Dr. J Gordon Parish and myself. Other than Dr. Gary Holmes and Dr. Stephen Straus, at that time I was not aware of whom the other people present may have been. Of Shelekov, Parish and myself, I was clearly the least
knowledgeable of the three having seen by then some hundred or so patients with M.E. and read extensively the existing literature. However my knowledge at that time could not be compared to these two published giants.
It was obvious that most of the assembly associated this epidemic disease with Epstein Barr Virus and infectious Mononucleosis, what the British refer to as glandular fever. It was immediately apparent that the consensus was going to be highjacked by this majority. Dr. Shelokov and Dr. Parish decided that this meeting was going nowhere and so decided to leave before it terminated. I followed them knowing full well that if I was going to learn anything credible about this disease process then I had to understand their incredible
knowledge base that had been developed for over 20 years.
It was a wise choice for me in terms of acquiring knowledge but it was a bad choice in that had we stayed, we might have influenced the decision that was to appear in 1988.
The 1988 CDC definition did several things, all of which caused immeasurable confusion.
Why did the 1988 CDC definition damage our knowledge and understanding of the epidemic and endemic disease? Remember that in describing the Lake Tahoe epidemic this committee were describing a typical Myalgic Encephalomyelitis Epidemic
Major Problems of the 1988 CDC definition
It is my opinion that the CDC 1988 definition of CFS describes a non-existing chimera based upon inexperience individuals who lack any historical knowledge this disease process. The CDC definition is not a disease process. It is (a) partial mix of infectious
mononucleosis / glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance.
Dr Carlos Lopez of the CDC’s herpesvirus division announced the results of this meeting, which shows that despite the absence of the ME literate physicians, the evidence had
This clearly shows the shift in focus from CEBV Syndrome to Lake Tahoe “HBLV disease”, “similar to myalgic encephalitis”.
Epstein-Barr: Myth and Reality
Nov 23 1987
by Sandra Gurvis – The Spokesman-Review
Charlene, a 35-year-old married mother of two, wept with relief when she learned she had chronic Epstein-Barr virus (CEBV). “I’d been sick off an on for over two years and no one could tell me what was wrong. One doctor thought I had hepatitis, another sent me for an eye test, still another prescribed tranquilizers and suggested counseling. At last what had been plaguing me had a name.”
Yet her diagnosis, like that of thousands who claim to suffer from CEBV, has generated a tremendous amount of controversy within the medical community. Some doctors believe CEBV is a genuine ailment, while others regard it as a buzz word for hypochondria. Still others consider it a catch-all diagnosis for symptoms that can’t be explained, as had been the case with low blood sugar, iron-poor blood, and thyroid disorders in the past.
According to medical definitions, Epstein-Barr is a herpes virus, similar to chicken pox, genital lesions and cold sores. It is closely related to infectious mononucleosis in the United States and Western Europe, Burkitt’s lymphoma (a tumor of the jaw) in Africa, and cancer of the nose and mouth in Asia.
“The Epstein-Barr virus is present in the white blood cells in over 90 percent of the American population,” explains Dr. Ronald Glaser, chairman of the Ohio State University Department of Medical Microbiology and Immunology in Columbus. The virus is believed to be transmitted by saliva. “Usually it remains dormant until the immune system weakens, causing it to proliferate.”
And unlike mono, which strikes during adolescence and college years. CEBV affects adults. “During the first three to six weeks of incubation, patients show few or no symptoms,” states Dr. James Jones of the National Jewish Center for Immunology and Respiratory Medicine in Denver. “The illness takes hold, may worsen, then reaches a plateau, waxing and waning at seemingly unpredictable intervals.”
“Victims of the disease, dubbed the “yuppie flu” are primarily women, health professionals and high level executives in their 30’s and 40’s. The symptoms, they say, range from partially to completely disabling, cutting them off from their jobs, recreational activities and loved ones.
“The disease took over my life,” Charlene asserts, “I ran a counseling program for 13 years and had to quit. Whenever I have bad spells, I’m forced to hire a babysitter to help care for my kids. I love my career and my family, but I’m too sick to handled them full time.”.
Also nicknamed the “Raggedy Ann Syndrome” because sufferers feel as if they’ve had the stuffing knocked out of them, CEBV first received national attention in 1985 after an outbreak of a mysterious illness in Incline Village, near Lake Tahoe.
According to an account in Hippocrates magazine, two local doctors, Paul Cheney and Dan Peterson, began seeing an uncommonly large numbers of patients with persistent flu-like symptoms.
The patients tested negatively for mono, so Cheney and Peterson did some research, coming upon articles on CEBV in a medical journal. They then ordered a recently developed diagnostic test from a commercial laboratory. The results showed high levels of antibodies to the virus in sufferers. Thus, a syndrome was born — or perhaps reborn.
Because of the outbreak appeared to be centered in the Lake Tahoe area, the Centers for Disease Control (CDC) sent two researchers to investigate. Their highly publicized report in May 1986 questioned not only the validity of the lab test but pointed out that healthy people also had high antibody counts.
The findings led many physicians to assume that CEBV was a fraud, even though more cases kept surfacing. “There’s a large element of “me, too” in this,” says Ohio State’s Glaser. “Once news of a disease hits the media, people start thinking they have it if they’re tired or depressed.”
However, “not everyone who is sick is imagining this,” he insists, “Many are truly ill. They have clinical symptoms to prove it. And well-adjusted people who lead vigorous, active lives don’t suddenly become too ill to lift their heads. Something is out there. We just don’t know exactly what.”
The CDC is currently compiling a standard clinical diagnosis for Chronic Fatigue Syndrome for use by all doctors.
“We’ve had similar outbreaks since the 1930’s” explains Carlos Lopez, chief of the Herpes-Virus Division there.
“The Scientific literature has described something like it for the past 50 years.” It has also been known as Royal Free disease, epidemic neuromyasthenia and myalgic encephalitis.
Lopez hopes the definition will serve as a unifying force in identifying the syndrome. “Our investigators were looking at one specific virus, Epstein-Barr (in Incline Village). What we’re dealing with is a series of symptoms, possibly resulting from a number of viruses.”
Other causes might be infectious agents, or the body’s inability to respond to infection, toxic materials, stress or other psychological reactions, or a combination of these factors.
And research is beginning to uncover a few things. Dr. Robert Gallo of the National Institutes of Health, who also identified the AIDS virus, recently discovered a new herpes virus, (HBLV) which may be involved in Chronic Fatigue. Researchers are currently trying to isolate HBLV in patients who already have the syndrome.
Preliminary results of a study by David Portilo of the University of Nebraska Medical Center link Chronic Fatigue with viruses known to cause sore throats (adenoviruses). And Ohio State’s Glaser is studying diagnostic “markers” associated with the Epstein-Barr virus and nasopharyngeal (nasal) carcinoma. He hopes to find an antibody that will serve as a common denominator in diagnosing some cases of the syndrome.
Yet look again at Dr. Hyde’s description of what happened.
The Lake Tahoe Epidemic
The Lake Tahoe epidemic that started in August 1984 also started amongst students. In this case the epidemic began in a high school girls’ basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately.
Dr. Paul Cheney and Dr. Daniel Peterson were inundated by the number of rapidly developing cases of seriously ill patients and called the Centre for Disease Control (CDC) in Atlanta for back up.
First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections
Fast-forward to April 1987 and the First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr Carlos Lopez. At this meeting Dr. Gary Holmes gave out his new paper, “A cluster of patients with a chronic mononucleosis-like syndrome,” that had just been published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:287:2297-2302)
The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren’t sure and suggested that further study be done.
Epstein Barr Virus (EBV)
Now anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days.
Neither Dr. Straus nor Dr. Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV.
Yet this epidemic somehow spread the myth that this illness was caused by EBV. Today, as I write this short history of M.E. and CFS the vast majority of physicians and the public still associate Epstein Barr Virus with CFS. Such is the perseverance of error.
How was this myth spread – when our outbreak is what publicized EBV even as we were disproving it.. leading to the creation of this new syndrome of CFS?
At least 250 “EBV groups” had sprung up. The Holmes definition didn’t make the reasons for the change clear, and these groups just plain never looked at why CFS was coined. The ambiguity of extracting “defining elements” from the Holmes definition worked like a charm.
Straus’s plan not only succeeded, it was CARRIED OUT BY THE BRAND NEW “CFS COMMUNITY” THEMSELVES.
We went right back to “CEBV Syndrome” under a new name. The door that was thrown wide open… slammed shut again.
Just as Straus hoped, the CFS community, thinking they were educating the public about CFS, declared war on it.
As Dr. Hyde says, spreading the myth that CFS was caused by EBV for the next 20 years… and “de-educating” the public of the real reasons CFS was created.
Now, does this mean that the evidence that started CFS has lost its meaning?
Not at all. Science has no statute of limitations. Facts do not become stale like old bread. There was no reason to discard them, despite this setback.
And once again, that is what the CFS community did.
“Tahoe doesn’t matter.”
“CFS is not my illness.”
“CFS is what Straus says it is.”
“CFS has moved on since then, none of that is important anymore.”
“You just want to cling to the past, what is done is done. The CDC won and we lost.”
“You are just crying over spilt milk.”
“Why don’t you just shut up and look forward.”
And in this way, all decided to blow their case, just as surely as a person who could free himself by DNA evidence decides to forego science as just bullshit that doesn’t matter and to throw themselves on the mercy of the court.
A court which strangely doesn’t seem to have any.
From a scientific perspective, a syndrome can not be made devoid of its original purpose.
Nor can its “charter evidence” be arbitrarily set aside. It is just as relevant now as the day it was compelling enough for the CDC to coin a new syndrome. It could still be used today just as effectively as 25 years ago.
Even the CDC knows this. But they have nothing to worry about.
They aren’t the ones who ultimately agreed to toss it all out and never use this evidence.
They simply stood back and let the CFS community trash it for them.
I’m sure even the CDC must be amazed and astounded at the success of Straus’s simple plan to misname the syndrome and throw the ball back to the CFS community as
to whether they agreed “CFS” represented the Tahoe evidence or not.
There has probably never been another instance in history when an advocacy effort so completely managed to snatch total defeat right out of the jaws of victory.