Summary of Issues

Patients need the name CFS changed, but scientists need that name to stay in place until the cause of CFS is found. Both needs may be accomodated if patients promote the adoption of an eponym, or a variant of the already commonly used "M.E.", for purposes of media articles and other common parlance, while scientists retain "CFS" when writing in scientific literature until they may deem a change is warranted.

However, any change is unlikely to occur unless there is a consensus on what the new name should be, and opinions vary widely. Roger Burns, the publisher of the CFS-NEWS electronic newsletter, is calling for a broad discussion of the name issue by the world-wide CFS community, which will be reported in that newsletter and elsewhere. An international conference on this issue was held in San Francisco in October 15, 1996. Everyone is urged to get their organizations to discuss this issue and to participate in the change-the-name project.

About the promoter of the Change-the-Name project: Roger Burns has a graduate degree in economic science, and was a government economist and a neighborhood civic leader before becoming ill with CFS. Now in medical retirement due to the illness, he publishes the CFS-NEWS Electronic Newsletter which has a direct circulation of over 6,000 in some 50 countries, and he also is the moderator of several on-line discussion groups about the illness. Roger can be reached by Internet e-mail at CFS-NEWS@MAELSTROM.STJOHNS.EDU or at the following postal address: 2800 Quebec St. NW, Suite 1242, Washington, DC 20008-1240 USA.

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TIMELINE OF EVENTS

1956 -- the term "myalgic encephalomyelitis" is coined by Dr. Melvin Ramsey and is published in the medical journal Lancet (U.K.)

1984 -- CFS outbreak in Lake Tahoe, Nevada USA brings new attention to the illness

1987 -- Name "Chronic Epstein-Barr Syndrome" is used for a while, based on prelimary scientific studies

1988 -- C.D.C. develops working case definition, chooses the name "chronic fatigue syndrome"

1989 -- Tom Hennessy, patient leader who later founds May 12 Awareness Day, calls for change of name at a San Francisco medical conference on CFS

1994 -- C.D.C. revises research definition, but retains the name "chronic fatigue syndrome"

1996 April -- Roger Burns, publisher of CFS-NEWS, calls for change of name at meeting of U.S. government CFS Interagency Coordinating Committee

1996 May -- U.S. Congress Appropriations subcommittee asks for name-change

1996 October -- Britain's Royal Colleges Report decries name "myalgic encephalomyelitis", recommends "chronic fatigue syndrome"; report is criticized by Lancet

1996 October -- Forum on name-change issues at San Francisco medical conference

1997 March -- Major survey on name-change published jointly by CFS-NEWS and CFIDS Chronicle

1997 May -- new U.S. government CFS Coordinating Committee hears testimony on name change

1997 June -- CFIDS Association of America (C.A.A.) conducts telephone survey on name change

1997 October -- U.S. government CFS Coordinating Committee meets; C.A.A. representative claims patients do not want an eponym; Committee recommends no name change until warranted by further scientific evidence, they disband their name-change working group

1998 January -- U.S. Congress hears testimony on lack of progress on name-change

1998 April -- CFS-NEWS issues 2nd survey, finds eponym option is clearly prefered by patients to keeping name CFS as is

1998 April -- U.S. government CFS Coordinating Committee discussion on name-change is cut off by chairman Brian Mahy; (Mahy is shortly thereafter formally accused of diverting CFS research funds, thus perhaps indicating a policy of generaly obstructing progress on CFS)

1998 Auguest -- Announcement of name-change session to be held at October AACFS medical conference

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