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C F S
- Information International
CFS - The Name ?
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Efforts to find a New Name
It is generally agreed that the name
CFS is absurd. Fatigue is but one of many symptoms - and for most
patients not even the most debilitating symptom. Dr. Jason's team studied the impact of the
name on the attitude of undergraduates,
Jason et al., 2001. This research
group published the results from two polls, investigating patients and health
care providers’ response to suggested name changes, jason.etal04.txt,
jason.etal04.pdf. Comparing ‘CFS’ and chronic neuroendocrineimmune
dysfunction syndrome, ‘CNDS’, the latter name suggested a more serious
disease to health practitioners, jason.etal.04.txt,
jason.etal.04.pdf. In other words: The name CFS
trivializes the disease. A Name Change Workgroup (NCW) was
appointed by the CFSCC (CFS Coordinating Committee, under the NHHS) in
1992. This workgroup, later to
be replaced by the CFS Advisory Committee (CFSAC) by the present US
government, at its Sep, 2003 meeting worked out a proposal for an umbrella
term: NDS, Neuroendocrineimmune
Dysfunction Syndrome, Name Change Draft, 2003. The 4
subtypes covered by the umbrella :
ME CFS (Fukuda et al.,
1994) Canadian clinical criteria GWS. Preceeding the 8 Dec, 2003 meeting of
the CFSAC, the Name Change Workgroup send a letter to Dr. Bell, appointed
chair of the CFSAC, urging implementation of their suggested name change, letter.NCW03.txt. As
listed, signing the letter, were prominent CFS researchers Drs. L Jason, N
Klimas and S Levine. The CFS Advisory Committee’s
(CFSAC) members are listed here, cfsac.members03.txt. A website was launced in Feb 2004 for
this committee, CFSAC Web site.txt.
At their Dec 8, 2003 meeting chairman of the committee, Dr. Bell
stated its position on the name change issue, dhha.cfsac.position03.txt. The CAA
stated that its board of directors supports the position of the committee, caa.statement03.txt. The NCF has summed up its postion in a review of the
events of the Dec 8 meeting, cfsac.meeting.ncf03.txt. At the meeting, Mar 22, 2004,
the name change issue was brought up once more, as reviewed by the CAA, cfsaa.meeting.mar22.04.txt. A more detailed review of the
meeting’s debate on the name change issue, name.change22.3.04.txt. Preceding this meeting, members of
the Name Change Workgroup wrote a letter to CFSAC to push forward the name issue, letter.NCW04.txt. At the CFSAC meeting, June 21,
2004, recommendations on CFS research and education in the US was discussed, meeting.cfsaa.jun21.04.txt. No discussion on the name,
apparently. The CFSAC held its 5th meeting
Sep 27, 2004 in Washington DC. A
month before this, David S. Bell, CFSAC Chairman sent a letter of eleven
"Recommendations of the Chronic Fatigue Syndrome Advisory
Committee" to the Secretary of Health and Human Services (HHS) Tommy
Thompson on August 23, 2004, letter.name.bell04.txt. This position does not favour an
immediate name change. Name Suggestion : ME
Among patient organizations,
especially in Britain, the term ME has long been preferred. ME is
short for Myalgic Encephalomyelitis -- or more recently, Myalgic
Encephalopathy. The difference
between –itis and –pathy explained, murphy04.txt. A summary of the history behind the name ME, cfs-news.burns99.txt. A letter from English Dr.
Shepherd in the name debate, letter.shepherd02.txt. Name Suggestion : CFIDS In the US the term CFIDS
(Chronic Fatigue and Immune Deficiency Syndrome) is also used. This name was proposed by the
founder of the CAA, short for CFIDSAA.
A short statement from Mr. Iverson in connection with his resignation,
caa.iverson04.txt. History of CFS - and its Names
An overview of the history of
CFS - its events and people,
CFS, Names, Events, 1999, and the names held for similar
diseases in history,
Albert Donnay, list, 2001. |
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