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LATEST NEWS on Changing the Name

Updated: February 13, 2001

2001 January --

The American name change workgroup held a public forum at the AACFS conference in Seattle

The U.S. CFS Coorinating Committee has decided to hold a name-change workshop at its next meeting in July in Washington, DC. They have also issued a questionnaire for the public which can be seen here.

Many American patient groups are promoting M.E. as a new name for CFS.

An editorial on M.E. and the CFS name change is circulated by Roger Burns, publisher of CFS-NEWS (see those comments here.)

2000 September -- Report by U.S. Name Change Workgroup

2000 June -- U.S. Name Change Workgroup is chosen

2000 April -- CFS-NEWS publisher Roger Burns says scientists oppose change of name and therefore change will not come about (see statement here)

2000 February -- U.S. CFS Coordinating Committee proceeds to form a new name change working group

1999 November -- U.S. Dept. of HHS says name-change won't happen quickly and should wait for additional scientific evidence

1999 October -- CDC announces that the illness will be re-defined. This creates a further opportunity for a name-change.

Brussels forum on name change, Sept. '99

U.S. Government to create Name Change Working Group, April '99

Boston forum on name change, Oct. '98

CFS-NEWS NAME SURVEY TWO:

The results of the second CFS-NEWS Name-Change Survey can be seen at http://www.cfs-news.org/survey-2.htm

Also see the general Surveys information page that has reports on 7 completed surveys of patients, doctors and researchers on the name-change issue conducted by various organizations and on the Internet. The Surveys page is at http://www.cfs-news.org/surveys.htm .

1997 CFS-NEWS SURVEY ONE RESULTS SUMMARY:

Results as of Tuesday, May 27, 1997, 2:00 AM EDT. Number of patients reporting: 668. The following figures are percentages.

Votes for first place (sums to 100 percent):

  ME-2  ME-1  other  Ramsay  CFIDS  Flo  C-P  CFS  Osler  P-C  Darwin
  ----  ----  -----  ------  -----  ---  ---  ---  -----  ---  ------
  46.6  19.8   13.2    6.7    3.3   3.3  1.7  1.2   1.1   0.7   0.4

Votes for any placement within top five:

  ME-2  ME-1  Ramsay  CFIDS  C-P  other  P-C  Flo  Osler  CFS  Darwin
  ----  ----  ------  -----  ---  -----  ---  ---  -----  ---  ------
  73.2  57.2   29.8    26.7  24.7  22.7  21.1 18.7  15.6  9.0   3.6

(Notes: ME-2 = Myalgic Encephalopathy, ME-1 = Myalgic Encephalomyelitis, P-C = Peterson-Cheney, C-P = Cheney-Peterson, Flo = Florence Nightingale)

For further details on the latest results, click here.

Congressional testimony on the name-change was given by CFS-NEWS publisher Roger Burns on Jan. 28, 1998 (see further details here).

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Acknowledgements

Thanks are owed to many who have helped to explore the issue of changing the name. Hundreds, if not thousands, of CFS patients have pressed public health and government officials to help clear the way for legitimacy by taking the vital step of changing the name of this illness.

I would also like to give particular thanks to the following leaders: Gail Kanksy of the National CFIDS Foundation (USA); Ellen Piro, Norwegian M.E. Assoc.; Kristin Thorson, Fibromyalgia Network (USA); Dr. Philip R. Lee, U.S. Ass't Sec'y. for Health (retired); Prof. Alexis Shelokov; Dr. Nancy Klimas; Tom Hennessy; Kim Kenney, president of CFIDS Assoc. of America; Vicki C. Walker; other staff members of the CFIDS Assoc. of America; Mavis Moore and the staff of the UK M.E. Association; Marion Lescrauweat, president of the European M.E. Assoc. Alliance; Christine Hunter; Lydia Nielsen; Sharon Kautto; Helen Tucker; Leslie Boyer; the various national-level organizations that supported the 1999 joint-panel project, including the National CFIDS Foundation (USA), Medical PWCs (USA), RESCIND, the MEdium Editorial Board (Netherlands), the Belgium M.E. Assoc., the Norwegian M.E. Assoc., the Denmark M.E. Assoc., the Alison Hunter Memorial Foundation (Australia), and Canada's ME/FM Action Network; the members of the 1996 San Francisco name-change discussion panel including Bonnie Gorman, Katrina Berne, Gail Dahlen, Lea Rhodes, Sarah Bass, Gretchen Mason and Jon Sterling; and the participants of Internet CFS discussion group.

Roger Burns is solely responsible for this document and its future revisions.

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