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C F S
- Information International Welcome
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Welcome to CFS - Information International
(CFS-II). I hope you'll find the information on ME/CFS, FM and related
syndromes you are looking for - I do my best to keep up with new research and
take down outdated information. The Struggle over CFS
Here, at the beginning of the
new millenium, the "struggle over CFS" has crystallized into a
harsh battle over the place for classification of CFS in the ICD
[International Classification of Diseases], edited by the WHO. Strong forces
within psychiatric circles, primarily in England/ Australia, but with
fractions also in the USA and other countries, aim to have CFS transferred
from the neurological diseases' list [the present G93.3 list] to
the psychiatric list [the F48 list]. These forces lean on the
classical argument that there is still "no convincing laboratory
test for CFS", but they race against time. Research has now
grown beyond the dualistic mind/body views held earlier, with the recognition
of the complex role of interaction between the mind and body in terms of
brain mediators, cytokines, mental and physical stressors, viral and other
infections - all interacting extensively with each other - the field of
psycho-neuro-immunology has emerged. An interesting 2001-debate took
place in BMJ, 'Time to abandon the term mental illness' Baker & Menken, 2001. A pamphlet on mental health published on-line Sep
2001 by the London psychiatric office, Kings College, a WHO-associated
office, illustrates the ongoing struggle. In the pamphlet ME/CFS
was included, but with the diagnostic code for CFS stated as F48.0
[mental illness]. This of course was quite provocative, and
resulted in protests from the CAA,
letter, CAA, WHO, 2001, letter, CAA, WHO UK, 2001, and MEA, letter, Shepherd, WHO UK, 2001, and
activists, letter, Harrison, 2001. Some WHO responses to
activists: letter, Connie, WHO, 2001, letter, reply, WHO, 2001, and letter, response, WHO, 2001. Protests were
also addressed at the Chief Medical Officer's office UK [CMO], here the
response to these protests,
letter, reply, CMO, 2001. In 2002, a second edition of the pamphlet was
provided, but has not completely solved the problem, WHO-guide, UK, 2002. The position
of Australian psychiatry, and its use of biased questionnaires for
CFS-diagnosis, was presented at the Sydney 2001-conference, Phillips, 2001 and Stein 2001. In Br J Psych
is also a debate on the position of CFS in relation to WHO diagnostics, letter, Bailly, 2002. The Stigma resulting from the Unknown
The stigma resulting from a
disease not fully accepted has been studied by Dr. Natelson's group in New
Jersey, Green et al., 1999. This research
group also questioned the psychiatric disease model for CFS, because of its
seasonally debut,
Zhang et al., 2000. Dr. Jason and co-workers from DePaul
University, US has studied the effect of the name on the perception of the
disease, press, CFS name, 1999, and Jason & Taylor, 2001. The research
team tested a 13-step 'CFS-attitude' scale, Shlaes et al., 1999, and the
position of attendants at the 2001-AACFS meeting, Jason et al., 2001. Jason also tested the CFS name in front of
medical trainees,
Jason et al., 2002, and theorized on the effect of science and
advocacy, Jason et al., 2002. New Name for CFS - When ?
On the name question,
former U.S. Assistant Secretary of Health Philip Lee, in Oct, 1998
said, 'the name trivialized the
disease' . At the CFSCC-meeting in
Washington, April 1999, a governmental committee for a name change was
appointed. Dr. Donna Dean published, on behalf of the committee, their
suggestion for a new name, Oct. 2001: CNDS, Chronic Neuroendocrineimmune Dysfunction
Syndrome, new
name, CNDS, 2001. August 2002 the name committee became regulated by a
new so-called CFS advisory committee (CFSAA), has been surprisingly
quiet. This situation has been the cause of worry to the CAA, advocacy, CAA, 2002, and news, HHS, CAA, 2002, but with
hopes for improvement,
letter, CFSCC, 2002, and
charter, CFSCC, 2002. Also the NCF is worried, announcement, NCF, 2002, letter of
reply,
letter, CFSCC, NCA, 2002, and CFSCC, NCF, 2002. In August, 2002, the Name Committee published their
FAQ on the name issue. Interestingly, their final proposal was an umbrella
term, covering various subgroups and with the name : NDS,
Neuroendocrineimmune Dysfunction Syndrome, FAQ, NDS, 2002. At their 8 Dec 2003-meeting, the CFSAA however did
not find the time right for a name change (see ..\CFS.name\cfs.name.html
on this website). Canadian Clinical Criteria for CFS in 2003
A Canadian committee has
finished its work on a new set of clinical criteria for CFS/ME, Canadian Panel, ME/CFS, 2002. |
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