Tuesday, November 30, 2010

Applying for a grant into CFS research is a career killer

By: Clinical Psychologist M.S. Allen, phd

I'm a clinical psychologist who's been disabled for 17 years with this disease. Your story is essentially the once a decade regurgitation of "is it or isn't it real" As a clinician I quite well know when I'm sick and this disease is harrowing.

The questions you should be asking are:

1. Why is it called Chronic Fatigue Syndrome when the symptoms are in no way comparable to 'chronic fatigue'? If I had the latter I'd take more naps.

2. Why has the NIH never funded a single substantive study into CFS in 27 years? I've been told by several HIV researchers in the past that the word is out that even applying for a grant into CFS research is a "career killer".

3. Media stories are rare and when they occur it's almost never noted that there are about 4-5 clinical case definitions of CFS and the different definitions are reflected in the study outcomes.

In the UK, They use the "Oxford criteria" which is so vague that anyone with any kind of longstanding fatigue, including people with clinical depression can get a CFS dix. Our CDC's #### criteria is a little more specific but in the past 3-4 years the CDC as created its own new "Empirical Criteria" which is as vague as the Oxford's and which the CDC created without consulting any outside experts into CFS.

4. why has no one looked into the NIH's CFS research grant approval panel. Until last month, it had NO experts into CFS and included many dentists. I'm am not joking. Imagine a panel of dentists ruling on cancer or M.S. grant proposals.

The panel membership has been largely replaced in the past month with many CFS experts, but the chair of the panel is still a dentist!!

As a clinical psychologist I am never surprised at how little psychiatry and abnormal psychology most doctors have a command of. And when faced with a disease that doesn't show up on their tests, the default is always to depression or anxiety.

But there are 1000s of studies showing immune, CNS, and endocrine abnormalities in CFS patients.

Clinical Psychologist M.S. Allen, phd

(comments from michaelallen999 1:14 AM)

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