How did an outbreak of Myalgic Encephalitis kick off a myth that has lasted for decades?
The following is just a bare-bones history of how CFS came to be. The full story of Chronic Fatigue Syndrome is beautifully
chronicled in Hillary Johsons's brilliant book, "Osler's Web - Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic".
In 1983, Dr. Dan Peterson and Dr. Paul Cheney had a small medical practice in Incline Village, Nevada. Unbeknownst to them, their
lives and the lives of millions of people were about to change forever. Patients started straggling in with a strange flu-like illness,
unusually severe and debilitating in nature. The original patients worsened over time, and new patients continued to find their way to
the clinic daily. All of these patients had the same complaints - memory loss, headaches, muscle aches, exacerbation of symptoms
after exercise, and a deathly depletion that could only be described as crushing fatigue for lack of better words.
This illness had been manifesting in recognizable clusters for a long time, each one earning a local name and a flash of fame, soon
to be followed by oblivion. Other doctors across the country had been calling the CDC for help. During the same time period, Dr.
David Bell in Lyndonville, NY, was experiencing a similar outbreak amongst his patients. So was Dr. Tony Komaroff in Boston. But
the CDC was operating on the working hypothesis that these outbreaks were prolonged cases of Epstein-Barr Virus, most likely
enabled by the overburdened immune systems of people who needed to take better care of themselves. Enter the "allostatic-load"
theory.
Myalgic Encephalomyelitis-literate doctors had seen this before....and so had the CDC. But somehow the CDC doesn't access
historical information, and investigations consisted mostly of assuring the concerned doctors that their fears were groundless, and
that the illness would most likely resolve itself.
Drs. Peterson and Cheney became alarmed as more and more people came down with this strange illness, and didn't get better.
Alarmed, Dr. Peterson made a call to a personal friend inside the CDC. The investigation into the "Tahoe Mystery Illness" almost
didn't happen, but Jon Kaplan and Gary Holmes probably saw a nice, easy suppression of an EBV outbreak combined with a little
hysteria, and a paid vacation to a charming ski resort.
Dr. Steven Straus of the National Institutes of Health, and virologist James Jones of the CDC, were both publishing papers detailing
their theories of Chronic Epstein Barr-Virus Syndrome. Dr. Straus in particular was anxious to prove that the Incline cluster, along
with the other clustered outbreaks, were cases of CEBV. But in 1986, Dr. Cheney was rounding up patients to participate in the
1987 CDC Holmes Definition Study Group, a group formed to determine a definition for the disease. Among Cheney's Tahoe Study
partipants were 19 patients who were EBV-negative.
The evidence that Drs. Cheney and Peterson had was compelling, and extremely adverse to anything Dr. Straus wanted to hear.
But the fact that EBV did not have to be present in this disease was enough to prevent it from being named "CEBV". However, the
Holmes committee collaborators seemed very reluctant to assign the illness a name with any connotations of a viral component.
The chore of the Holmes Committee was to set down an operational concept - a list of symptoms belonging to a disease that was not
yet in literature. The name "Chronic Fatigue Syndrome" was chosen, making one of the most ineptly described symptoms of the
disease a central part of its name. The label was intended to indicate the symptoms, until such a time as the etiology of the disease
could be uncovered.
But almost from that moment forward, the illness became a symptom of the description, and the very people for whom the
"operational concept" were named, were disenfranchised from having the disease, as they did not exactly fit the description. Over
time, as the CDC-s "conceptualization" of the definition of CFS grew and expanded, and simultaneously narrowed in scope, almost
any undiagnosed illness could fit into the CFS structure while at the same time, any illness with real biomarkers would be disqualified
from the diagnosis.
CFS became the unattainable chimera of modern medicine, a disease that describes the masses and at the same time, since there is
no known etiology, doesn't exist.
The following is just a bare-bones history of how CFS came to be. The full story of Chronic Fatigue Syndrome is beautifully
chronicled in Hillary Johsons's brilliant book, "Osler's Web - Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic".
In 1983, Dr. Dan Peterson and Dr. Paul Cheney had a small medical practice in Incline Village, Nevada. Unbeknownst to them, their
lives and the lives of millions of people were about to change forever. Patients started straggling in with a strange flu-like illness,
unusually severe and debilitating in nature. The original patients worsened over time, and new patients continued to find their way to
the clinic daily. All of these patients had the same complaints - memory loss, headaches, muscle aches, exacerbation of symptoms
after exercise, and a deathly depletion that could only be described as crushing fatigue for lack of better words.
This illness had been manifesting in recognizable clusters for a long time, each one earning a local name and a flash of fame, soon
to be followed by oblivion. Other doctors across the country had been calling the CDC for help. During the same time period, Dr.
David Bell in Lyndonville, NY, was experiencing a similar outbreak amongst his patients. So was Dr. Tony Komaroff in Boston. But
the CDC was operating on the working hypothesis that these outbreaks were prolonged cases of Epstein-Barr Virus, most likely
enabled by the overburdened immune systems of people who needed to take better care of themselves. Enter the "allostatic-load"
theory.
Myalgic Encephalomyelitis-literate doctors had seen this before....and so had the CDC. But somehow the CDC doesn't access
historical information, and investigations consisted mostly of assuring the concerned doctors that their fears were groundless, and
that the illness would most likely resolve itself.
Drs. Peterson and Cheney became alarmed as more and more people came down with this strange illness, and didn't get better.
Alarmed, Dr. Peterson made a call to a personal friend inside the CDC. The investigation into the "Tahoe Mystery Illness" almost
didn't happen, but Jon Kaplan and Gary Holmes probably saw a nice, easy suppression of an EBV outbreak combined with a little
hysteria, and a paid vacation to a charming ski resort.
Dr. Steven Straus of the National Institutes of Health, and virologist James Jones of the CDC, were both publishing papers detailing
their theories of Chronic Epstein Barr-Virus Syndrome. Dr. Straus in particular was anxious to prove that the Incline cluster, along
with the other clustered outbreaks, were cases of CEBV. But in 1986, Dr. Cheney was rounding up patients to participate in the
1987 CDC Holmes Definition Study Group, a group formed to determine a definition for the disease. Among Cheney's Tahoe Study
partipants were 19 patients who were EBV-negative.
The evidence that Drs. Cheney and Peterson had was compelling, and extremely adverse to anything Dr. Straus wanted to hear.
But the fact that EBV did not have to be present in this disease was enough to prevent it from being named "CEBV". However, the
Holmes committee collaborators seemed very reluctant to assign the illness a name with any connotations of a viral component.
The chore of the Holmes Committee was to set down an operational concept - a list of symptoms belonging to a disease that was not
yet in literature. The name "Chronic Fatigue Syndrome" was chosen, making one of the most ineptly described symptoms of the
disease a central part of its name. The label was intended to indicate the symptoms, until such a time as the etiology of the disease
could be uncovered.
But almost from that moment forward, the illness became a symptom of the description, and the very people for whom the
"operational concept" were named, were disenfranchised from having the disease, as they did not exactly fit the description. Over
time, as the CDC-s "conceptualization" of the definition of CFS grew and expanded, and simultaneously narrowed in scope, almost
any undiagnosed illness could fit into the CFS structure while at the same time, any illness with real biomarkers would be disqualified
from the diagnosis.
CFS became the unattainable chimera of modern medicine, a disease that describes the masses and at the same time, since there is
no known etiology, doesn't exist.
email us at khaly@cfsuntied.com
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