One of the original Incline Village patients wrote: We didn't know that doctors would so completely fixate upon "fatigue" that they would become entirely blinded and oblivious to the neurocognitive complaints and neurological inflammation.
Angela Kennedy, founder of One Click Group responded:
Yes, I think this is a key issue. And I think the words fixated on fatigue and oblivious to the neurology APTLY describes many doctors approach to ME/CFS/LYME etc patients. How indeed were patients to know this would happen?
Excerpts from Angela’s personal site http://health.groups.yahoo.com/group/APK-PAPERS:
"5. Fatigue as a trivialising term
... `fatigue' (which might mean tiredness, drowsiness, exhaustion, disturbed level of consciousness, weakness, paralysis, or feelings of malaise, depending on how certain illnesses are experienced or linguistically constructed by individuals) is present in MOST organic illnesses, acute and chronic.
Proponents of the psychiatric paradigm, in their literature, tend to associate `fatigue' with a psychological state, ignoring the physiological reasons that may contribute to the bodily symptoms in ME/CFS ... This logistical flaw results in only the most limited investigation being encouraged for ME/CFS patients, and NOT in areas that might yield definitive results, such as certain brain scans (as discussed and referenced in Hyde et al, 1992, Marshall et al, 2001, Carruthers et al, 2003).
Particularly relevant to ME/CFS sufferers also is the problem also identified by Hyde (1992: 11-12): `……taking the fatigue as the flagship symptom of a disease not only bestows the disease with a certain Rip Van Winkle humour, but removes the urgency of the fact that most ME/CFS symptoms are in effect CNS symptoms.'
This incorrect practice of using the terms `chronic fatigue' and `chronic fatigue syndrome' interchangeably and confusingly has a direct relationship to the research design flaws delineated in point 4 of this document, and the actions described in point 1."
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Patients did not know that this would happen, but in writing "Osler’s Web", Hillary Johnson made a FOIA request for government documents, and found the smoking gun government memos in which it was discussed that calling this Encephalomyelitis-type virus "Chronic Fatigue Syndrome" would make it easier to portray patients as lazy/crazy and thus limit access to disability benefits.
And, sure enough, the medical community which shortens "Asperger’s Syndrome" to "Asperger’s" did the same thing with CFS, dropping the word which is of such importance to differentiation and began referring to "chronic fatigue syndrome" as "chronic fatigue", which opened the door to the psychiatric proponents using the two interchangeably and blurring the lines between post-viral CFS and psychiatric problems and just generalized fatigue from overwork/undersleep. Exactly as those who bestowed the new name intended to occur.
CDC did update their website last year to indicate that there’s a physical component to CFS, but, one step forward, two steps back, states that the tests that we know to provide objective proof of the biological illness ME/CFS are unnecessary. Without objective evidence, it’s difficult to win a case for disability benefits, so if your doctor is taking all his guidance from the CDC’s website, the government’s own misinformation from one agency is saving money for another agency, just as planned in 1988 when the name was coined.
And without objective evidence that you have neurological CFS versus psychosomatic fatigue, it allows the psychiatric community to continue lining their pockets both with research dollars that allow them to "prove" that CFS is depression or stress or unwillingness to work, and, in the UK, with NHS funds for ongoing CBT treatment, even though it’s obvious to anyone with half a brain that talk therapy cannot cure a virus. CFS patients who don’t improve simply from talking about their symptoms are branded "uncooperative" and ordered to continue CBT if they want to continue their government benefits; no effort is made to determine if a different therapy (such as anti-viral medication) would be more effective.