In Hyde's own words:
The (first) 1988 CDC definition did several things, all of which caused immeasurable confusion.
Why did the 1988 CDC definition damage our knowledge and understanding of
this epidemic and endemic disease?
Remember in describing the Lake Tahoe epidemic this committee were describing a typical Myalgic Encephalomyelitis (ME) 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 inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. It is (a) 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. Let us try to decipher this definition.
1. The principal author: Dr Gary Holmes is one of those men who it is
difficult not to like. From my limited knowledge of Dr Holmes it is my
opinion that he is well organized, brilliant, a kind man and the sort of
person any university would want to have on staff. To my knowledge he never
continued to show any interest in this disease process and Pub Med and
Google searches fail to reveal any subsequent scientific papers concerning
M.E. or CFS.
2. The other authors: So curious was the 1988 CDC definition that if you
review the authors, you will find that the majority had never published on
M.E. or CFS either before or after this definitional publication and the majority had never ever to my knowledge ever before or since examined or investigated any serious number of CFS patients. In fact, I would estimate that the majority had never actually examined and investigated a single M.E. patient.
3. The curious name: The authors named the disease Chronic Fatigue
Syndrome: Fatigue is a totally undefinable concept. Fatigue is impossible
to measure or quantify. Fatigue is so non-specific that it can be a common
element in any acute or chronic disease and many psychiatric diseases.
Worse, it redirects the medical and public attention to the totally
undefinable fatigue and away from the obvious Central Nervous System changes in these patients. Much worse, it makes fun of a serious illness since most people and most physicians tend to equate fatigue with
laziness, work avoidance, something that a bit of effort will chase away. It
has turned out to be a damning indictment to all M.E. patients.
4. The first Major Criteria: This 1988 CDC definition contains (a) two
major criteria, (b) 11 Minor Criteria, (c) three physical criteria.
Let us start with the first major criteria:
"A new onset of persistent or relapsing, debilitating fatigue or easy
fatigability in a person who has no previous history of similar
symptoms, that does not resolve with bed rest, and is severe enough to
reduce or impair average daily activity below 50% of the patients
premorbid activity level for a period of at least 6 months."
This major criterion does not clearly distinguish between acute or gradual
onset diseases. In all M.E. epidemic or endemic patients the patients
represent acute onset illnesses. The fatigue criteria listed here can be
found in hundreds of chronic illnesses and clearly defines nothing.
5. The second Major Criteria: This makes the illness CFS a disease of
exclusion. The definitional statement is:
"Exclude all other disease processes. "
Any disease process that has major criteria, of excluding all other disease
processes, is simply not a disease at all; it doesn't exist. In effect, by either
the first or second major criteria this is nor a measurable illness and a
disease that is not measurable or testable simply does not exist. What did Dr Holmes and his colleagues miss? They missed the fact that M.E. is (a) an acute onset illness, (b) the fact that M.E. is a measurable diffuse brain injury, (c) in a complete form, M.E. has a dual inception, an infectious illness followed by the diffuse neurological aspects of this disease.
6. The Minor Criteria are consistent with M.E. but unfortunately for the
greater part, are also consistent with Infectious Mononucleosis that I
believe the authors of these diagnostic criteria thought they were
describing.
7. The Three Physical Criteria of the CDC 1988 Definition: These
findings are totallyrelated to infectious mononucleosis and not to
the normal or average Myalgic Encephalomyelitis. The criteria fail
to distinguish the biphasic nature of M.E. as mentioned before, the
initial infectious illness that often resembles the minor infection that
heralds another biphasic disease, paralytical poliomyelitis. The infectious
disease process varies but is usually minor and after three or four days is
usually unverifiable so that any researcher who quotes the patient as having
the three physical criteria when he or she examines the patient probably
at the very least can be accused of being very imaginative. First it is
not possible to examine any patient in the first days of illness unless it
is an epidemic situation. In several chronic thousand patients I have
examined the three physical criteria simply do not exist in more than 1%
of the patients examined.
What are the CDC Physical Criteria?
a. Low-grade fever with an oral temperature between 37.6 and 38.6
centigrade,
b. Non-exudative pharyngitis (without any pus or discharge),
c. Palpable or tender anterior or posterior cervical or axillary lymph nodes
less than 2 cm in diameter.
In the chronic patients the temperature tends to be normal or subnormal.
Most chronic patients have no pharyngitis, they may have a dry pharynx,
they may have an injected pharyngeal area around the tonsilar pillars,
(Anne Mildon effect) but generally they don't have a classical pharyngitis
as seen in any acute infectious disease. As to the palpable lymph nodes, all
healthy patients well or otherwise unless they are severely obese have
palpable lymph nodes. Since many M.E. patients have hypersensitive
skin or fibromyalgia-like pains of course they have tenderness. But painful
lymph nodes scarcely are different from what is found in any acute upper
respiratory tract infection. If you are going to list physical findings then
you have to first specify whether this is in the first few days of the illness or
in the chronic phase and as mentioned almost no physician will ever see
acute onset illness unless in an epidemic. In other words these physical
criteria are at best of no diagnostic importance and in general, useless.
8. The Insurance Company - psychological bias: the direction given in
the name Chronic Fatigue Syndrome has opened the door for insurance
companies to invent and support a pseudo-psychological treatment of
physical and cognitive therapy that in my view has been used to push the
patients so far that they then quit the program and this allows the
insurance company to define the disabled patient as non-compliant and
allows the insurance company to stop insurance payments. Since many
if not most insurance policies also cut the patient off after two years
of disability, this psychological interpretation has been destructive to the
many patients disabled by M.E.
9. The pharmaceutical companies bias: These companies have also
jumped into the door opened by this name of chronic fatigue - depression
association in recommending a non stop series of "new and better"
antidepressive medications that not only have added little if anything to the
patients recovery but in many cases have caused suicides and even
greater fatigue. Since many of these medications have a side effect of
causing obesity, the patient's self worth is often further deteriorated.
http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
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