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NOTE: This web page does not support forms. You must obtain a copy of this questionnaire and send your responses by e-mail to CFS-NEWS@MAELSTROM.STJOHNS.EDU. If you have any difficult in making a copy of this page, you can obtain a copy via e-mail by creating a message which says GET CFS SURVEY and sending to LISTSERV@MAELSTROM.STJOHNS.EDU .
Personal information (Note: All personal data will be kept confidential.) 1) Name: __________________________________________ Address: __________________________________________ __________________________________________ City: ______________________________________________ State/Zip code: _____________________________________ Country: __________________________________________ Telephone: _________________________________________ 2) Are you a medical doctor? Yes or No: _______________ Are you a medical scientist? Yes or No: _______________ If either, then please provide the following: Institution or clinic: _________________________________ Office telephone number: ____________________________ 3) Have you carefully read the article above about changing the name? (It is very important to do so before filling out this survey.) Yes or No: _______ Alternative Name 4) Please respond to the following alternatives for names which the patient community might promote for common usage (that is, for all uses outside of the scientific literature). Choices were drawn from alternatives that were solicited in The CFIDS Chronicle and elsewhere. Place a number next to each choice below to indicate your preference. That is, place a "1" next to your preferred choice, a "2" next to your second choice, etc. The choices: ______ Chronic fatigue syndrome ______ Myalgic encephalomyelitis ______ Myalgic encephalopathy ______ CFIDS ______ Ramsay's ______ Osler's ______ Peterson-Cheney ______ Cheney-Peterson ______ Nightingale's ______ Darwin's ______ other: _______________________________________ 5) If you support the use of an eponym, would it be wiser to promote it with "syndrome" or "disease" as part of the name? Considerations: Many patients wish to avoid further problems which result from the 'fuzzy' term "syndrome." However, scientists object to the term "disease" because CFS fails to meet standard criteria for a disease. I prefer: Syndrome ______ Disease ______ Scientific Name 6) When scientists consider changing the name as it appears in the scientific literature, what characteristics should they avoid in the new name? ("yes" or "no") ______ avoid the word "fatigue" ______ avoid the word "chronic" ______ avoid the word "syndrome" ______ avoid the word "somatic" ______ avoid the word "benign" ______ avoid the term "neurasthenia" ______ avoid any term that tends to psychiatrize or psychologize the disease ______ other words to avoid (fill in) __________________ Questions for Doctors and Scientists If you are a doctor or a scientist, please answer the following four questions. 7) What characteristics for an alternative to the name CFS should patient groups avoid when they choose another name to promote for public usage? __________________________________________________ 8) Should scientists pick a new pathology-based name for CFS at this time? Yes or No: ___ 9) Should scientists pick a new descriptive name for CFS at this time (i.e., descriptive of the impact of the illness)? Yes or No: ___ 10) Should scientists choose an eponym for CFS at this time (regardless of whether, or when, the scientific name might be changed)? Yes or No: ___ Questions for All 11) What new scientific names would you recommend be considered by scientists? (Suggestions made by doctors will be reported separately from those made by others.) __________________________________________________ 12) Please add any additional comments that you may wish to include about any of the issues covered in this survey. ____________________________________________ 13) Would you permit your name and your responses to be quoted in public? Those who give such permission might have their comments appear in public reports which describe the results of this survey. Yes or No: ___ -------------------------------------------------------Current updates on the results of the survey can be found on the Internet at web address:
An on-line copy of the survey questionnaire, and other information on this topic, can also be found at that web address. The same information can be found by creating an e-mail message which says GET CFS NAME and sending to address LISTSERV@MAELSTROM.STJOHNS.EDU .
Please send your survey responses by e-mail to CFS-NEWS@MAELSTROM.STJOHNS.EDU or by postal mail to
c/o Roger Burns
2800 Quebec St. NW, Suite 1242
Washington, DC 20008-1240
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This page is maintained by Roger Burns of Washington, D.C.