Results for 1997 CFS Name Survey

Many thanks go to Carolyn Viviani, who developed and regularly updated the spreadsheet which tabulated the results of the 1997 CFS-NEWS Change-the-Name survey. To see the original survey questionnaire and background article, click here .

There were 668 patient responses as of May 27, 1997. The following results were patients' recommendations to scientists as they might go about selecting a new name:

    Terms that patients prefer to be avoided (shown in percentages)

                         Avoid  Don't avoid  No opinion
                         -----  -----------  ----------
 any term that tends to
 'psychiatrize' CFS       96.3       0.9         2.8
 "fatigue"                90.0       4.6         5.4
 "benign"                 85.5       5.2         9.3
 "somatic"                78.7       6.9        14.4
 "neurasthenia"           68.7      11.8        19.5
 "syndrome"               56.3      24.4        19.3
 "chronic"                48.2      31.6        20.2

The following answers were in response to questions about a patient- based campaign to promote a change of name for public usage:

    Preferred names

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

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

As can be seen by the last figures above, only 9 percent of respondents marked CFS among their top five choices. One might therefore deduce that all but 9 percent, i.e. 91 percent, have indicated a preference for "anything but CFS". The most popular choice of all was "myalgic encephalopathy", a term which has already appeared in the scientific literature, cf. see

Chronic Fatigue Syndrome (Myalgic Encephalopathy). Plioplys S, Plioplys, A. Southern Medical Journal, October 1995 88(10);993-1000.

Among eponyms -- Ramsay, Cheney-Peterson and Nightingale each got more than twice the response than "CFS".

On the question of whether to use "disease" vs. "syndrome" for a patient-based campaign to promote a change of name for public usage, the results by percentage were:

     Disease:  55.5     Syndrome:  28.1      no opinion:   16.3

---