Results for CFS Name Survey Two


See the full text of Survey Two
and the complete list of responses
(only a summary appears below).

The results will be posted here and updated as often as possible. Responses are coming in much faster than for the 1997 survey. It took us three months to get this many e-mail responses last year, now we have received that many in just over three days.

SURVEY OF CFS PATIENTS ON NAME-CHANGE
EXECUTIVE SUMMARY -- APRIL 27, 1998

Out of 250 respondents, analysis of results was limited 182 who reported (1) verifiable identification, (2) they are patients, (3) they are in the USA. American patients were selected for results to be presented to U.S. government's CFS Coordinating Committee because the motivating issue for changing the name is the stigma of the illness, and the stigma may be different in various countries.

For many answers, totals do not always sum to 100 percent because some respondents skipped some questions, and also those who expressed a desire for no change of name were excluded from questions that presumed that a change was desirable. Survey published in CFS-NEWS Electronic Newsletter.

A. Do you want the name "chronic fatigue syndrome" to be changed? (was Question 3) 
                  Yes  91.8%      No  8.2%
B. Eponym issue (was Question 6) 
Eponym support (combined preference):             72.0%
Don't choose eponym, wait for scientific name     15.4%

[ "Eponym support" was summed from two separate responses:

press for eponym now, AND a scientific name later      50.0%
press only for an eponym now, forgo scientific name    22.0% ]
C. Stigma issues 
Is stigma a main reason to change the name? (Qs. 13)      80.2%
Have you experienced stigma? (Qs. 14)                Yes  80.8%   No  3.8%
Know others who have experienced stigma? (Qs. 15)    Yes  81.7%   No  2.7%

Has stigma changed recently? (Qs. 16)

  Increased  14.3%    Same 26.9%    Less  21.4%    Don't know  22.0%
D. Name announcement needs press conference (was Question 5): 
      Combined preference    89.6%
      Not important           1.1%
E. Name announcement needs strong educational campaign (was Question 4): 
      Combined preference    87.9%
      Not important           1.1%
F. On proposed joint panel of scientists and advocates (was Question 10): 
      Combined preference    87.4%
      Not important           2.7%
G. Patients' consensus vs. disparity (was Question 8): 
  Want the name changed, need not be my favorite choice    83.0%
  Want my favorite choice only                              7.1%
H. Should recommend "myalgic encephalopathy" to CFSCC? (was Question 7) 
      No, wait for a more scientific name  30.2%
      Acceptable                           38.5%
      Strongly recommend                   21.4%
      [ Combined acceptability             59.9% ]
I. If must choose between an eponym now VS. more scientific name later: (was Question 17) 
      Eponym now -- forgo scientific name later    59.3%
      Wait for scientific name, nix eponym         23.1%
J. Specific eponyms (was Question 11) 
                   Ramsay  Gilliam  Osler   DP     DB     PC    Flo
                   ------  -------  -----  -----  ----   ----   ----

 Combined           61.0%   54.4%   44.5%  51.7%  50.5%  48.9%  45.0%
 acceptability

 Not acceptable     18.7%   23.1%   33.0$  28.0%  28.0%  30.2%  33.0%

   [ "combined acceptability" was summed from two separate responses:

   strongly         15.9%    7.7%    5.5%   8.8%  12.6%  13.2%  15.9%
   recomended

   basic            45.1%   46.7%   39.0%  42.9%  37.9%  35.7%  29.1%
   acceptance ]
Notes: question was framed that names might stand alone or be part of multi- name eponym. Specific names drawn from earlier surveys. DP = Dan Peterson, DB = David Bell, PC = Paul Cheney, Flo = Florence Nightingale.

K. How long to wait for evidence supportive of a more scientific name before pressing for an eponym? (was Question 12) 

     Eponym is a bad idea     4.9%        Wait 1 year              5.5%
     Wait 10 years            2.2%        Wait 6 months            2.7%
     Wait 5 years             3.8%        Wait 3 months            0.5%
     Wait 2 years             4.9%        Eponym right now        59.3%

 

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This page is maintained by Roger Burns of Washington, D.C.
E-mail: cfs-news-request@maelstrom.stjohns.edu