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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: ___
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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
CHANGE-THE-NAME SURVEY
c/o Roger Burns
2800 Quebec St. NW, Suite 1242
Washington, DC 20008-1240
USA
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This page is maintained by Roger Burns of Washington, D.C.
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