Date: Wed, 4 Dec 1996 02:36:37 -0500 From: Helen Tucker Sender: Chronic Fatigue Syndrome discussion CFIDS/ME Subject: NAME: Vote4Name Round 3 Results Hi Everybody, Many, many thanks to everyone who voted through the 3 rounds of the Vote4name survey. Here are the results of Round 3. I got a total of 132 votes for one of the top 5 names (which were determined in Round 2). 1) 73 Myalgic Encephalomyelitis, as used in many countries. 2) 28 Ramsay's Disease 3) 14 Myalgic Encephalopathy 4) 9 Ramsay's Syndrome 5) 8 Chronic Fatigue Syndrome By far, the name most voters chose as the alternate name to Chronic Fatigue Syndrome is Myalgic Encephalomyelitis. Ramsay's Disease is the next most preferred alternative. ------------------------------------------------------------------------------ ------- Discussion: Many people have asked me what the winning name means, if there will be an "official" use for this result. As I described at the outset, this is an informal survey to try to get a consensus on what the online PWC community thinks should replace the name CFS. There is a more formal, comprehensive Change the Name Project that Roger Burns and RESCIND, Inc. are working on, which also will include the opinions of doctors and scientists. (For more information on this, you can write RESCIND, Inc. at .) Although the results are not official, it does give us a lot of information about the name change issue. It can be viewed as a kind of "pilot study," if you will, that can provide information for the Change the Name Project. I have summarized some observations from Round 2 of this survey, as follows. (In Round 2, 117 people voted for their favorite name from a list of 62 possible names.) 1. Currently, the names Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are used in most countries in the world to describe this disorder. Nearly 25% (29/117) of the voters voted for either ME or CFS. This suggests that a significant proportion of PWCs favor the status quo, and no major name change. Any movement to change the name officially will have to address the concerns of this quite vocal group of PWCs. 2. Here are the percentages of the largest name clusters in Round 2. The name change movement should address the issues that divide the the consensus WITHIN the top three clusters: ME, Ramsay's, and Cheney-Bell-Peterson. The issues are: (1) myelitis vs. myelopathy vs. opathy, (2) "disease" vs "syndrome" vs other descriptors, and (3) the order of the names Cheney, Bell, and/or Peterson, and again "disease" vs. "syndrome." a. Nearly 25% (29/117) voted for ME or a variant of ME: Myalgic Encephalopathy or Myalgic Encephalomyelopathy. b. Nearly 25% (29/117) voted for a term with Ramsay's name in it. Nearly 19% (22/117) voted for Ramsay's Disease or Ramsay's Syndrome. c. A little over 10% (12/117) voted for a term with the names Cheney, Bell, and/or Peterson. This name combination is the third highest vote. d. A little over 4% (5/117) voted for Nightingale's Disease. e. About 36% of the voters (42/117) voted for 19 other names. 3. Here are the percentages of names that are scientific or descriptive vs. those that are named after people. a. About 60% of voters (70/117) voted for names of a scientific or descriptive nature. b. About 40% of voters (47/117) voted for names named after people. ----------------------------------------------------------------------- Thanks again for voting. If you have any private comments or questions, you can write me at: . Sincerely, Helen