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Summer 1997
Name-Change Survey Results
In the summer of 1997,
The CFIDS Association of America conducted a survey of its members to determine
their opinion about changing the name "chronic fatigue syndrome."
The
Summary
The Association survey represents responses from 120 members selected at random from the
membership rolls. The survey was conducted by telephone by volunteers and staff of the Association. All
but two of the respondents were persons with CFIDS (PWCs); the other two were parents of PWCs. Ninety
percent were women, 80% had completed at least some college and 18% had advanced degrees. Only 22% were
employed, and half of those were employed only part time. About half were receiving disability benefits,
and a handful were retired. The respondents ranged in age from under 20 to over 70 and have been ill with
CFIDS symptoms for from a few months to 59 years. The typical lag time between becoming ill and being
diagnosed with CFIDS was several years.
Among the results:
- 85% want the name changed. Of those, 70% said change it immediately, 15% said wait for a marker and
15% said wait for a determination of cause or full understanding of the illness.
- Half of the respondents want a new name to reflect the scientific understanding of the illness, while
30% want the name to be descriptive of the symptoms (though several specified "not fatigue"). Only 12%
liked the idea of using an eponym.
- More than three-quarters feel somewhat or very negative about the name CFS, while 13% feel favorable
toward it.
- 80% believe CFIDS is a better name than CFS.
- By a 2-1 margin, respondents say the term "chronic" is acceptable in a name.
- 86% said patients, doctors and scientists should choose a name together.
- Alternative names fared poorly. These are the percentage of respondents who gave the following names
a favorable rating: neuromyasthenia, 30%; M.E., 40%; myalgic encephalopathy, 39%; Ramsay’s or Osler’s
syndrome, 11%; Peterson-Cheney Syndrome, 22%; Nightingale's Syndrome, 14%.
- The following names were given most frequently as the respondent's personal choice: M.E. (either form),
14; CFIDS, seven; CFS, three; and CIDS (dropping fatigue), three.
- The most practical suggestion: "multi-something."
By the Numbers
Following
are the responses received to the survey questions:
Age:
|
Under 20: |
2 |
|
21-30: |
6 |
|
31-40: |
17 |
|
41-50: |
42 |
|
Over 50: |
37 |
Sex:
Highest attained educational level:
|
Completed high school: |
18 |
|
Some college: |
24 |
|
Completed college: |
42 |
|
Post-graduate degree: |
19 |
Employment (of person with CFIDS):
|
Employed full time: |
11 |
|
Employed part time: |
12 |
|
On Social Security disability: |
25 |
|
On private long-term disability: |
5 |
|
On both SSDI and LTD: |
10 |
|
Retired: |
10 |
Do you have any other related diagnoses?
|
Fibromyalgia: |
51 |
|
Multiple Chemical Sensitivities: |
19 |
|
Allergies: |
33 |
|
Other: |
18 |
Do you think CFIDS and fibromyalgia are the
same illness?
|
Same illness: |
17 |
|
Closely related illnesses: |
64 |
|
Not related: |
10 |
|
Don't know: |
14 |
Do you think CFIDS is closely related to multiple
chemical sensitivity syndrome (MCS) or Gulf War Syndrome (GWS)?
|
Closely related to MCS: |
48 |
|
Closely related to GWS: |
54 |
|
Not related to either: |
8 |
|
Don't know: |
37 |
Should the name of the disease (CFS) be changed?
|
Yes: |
88 |
|
No: |
10 |
|
Don't care: |
7 |
If yes, when do you feel the name should be
changed?
|
Immediately: |
62 |
|
As soon as a diagnostic marker or test for the illness is found: |
12 |
|
As soon as a cause for the illness is found: |
3 |
|
Only after there is broad agreement among scientists about how the illness works: |
7 |
Who should choose a new name?
|
Doctors: |
4 |
|
Scientific researchers: |
1 |
|
A patient group (such as The CFIDS Association of America): |
5 |
|
A committee of all three groups: |
89 |
Should the new name:
|
Be descriptive of the symptoms of the illness: |
24 |
|
Reflect the scientific understanding of the illness: |
44 |
|
Both of the above: |
7 |
|
Use the name of a person who is closely and publicly associated with the illness: |
13 |
Public relations professionals and government
researchers have said the name should not be changed more than once because of the difficulty and expense
involved in re-educating the public, physicians and the government. Does that advice make you more willing
to wait for scientific developments before changing the name?
|
Yes, wait: |
47 |
|
No, change it now anyway: |
50 |
How do you feel about the name "chronic fatigue
syndrome"?
|
Very favorable: |
4 |
|
Somewhat favorable: |
11 |
|
Indifferent: |
10 |
|
Somewhat negative: |
26 |
|
Very negative: |
51 |
Do the words "immune dysfunction" in
the name "CFIDS" make it a better name?
|
Yes: |
79 |
|
No difference: |
19 |
|
Worse: |
5 |
Please rate the following suggested alternative
names as Favorable, Indifferent or Unfavorable:
|
|
Favorable |
Indifferent |
Unfavorable |
|
Neuromyasthenia:* |
30 |
30 |
40 |
|
Myalgic Encephalomyelitis:* |
40 |
28 |
32 |
|
Myalgic Encephalopathy:* |
39 |
30 |
31 |
|
Ramsay’s: |
11 |
21 |
68 |
|
Osler’s: |
11 |
18 |
71 |
|
Peterson-Cheney or Cheney-Peterson: |
22 |
22 |
56 |
|
Nightingale's: |
14 |
11 |
75 |
* Definitions: Neuromyasthenia - muscle
weakness with a neurological component; Myalgic Encephalomyelitis- muscle pain caused by inflammation
of the brain or spinal cord; Myalgic Encephalopathy - muscle pain caused by brain dysfunction.
Should
the term "chronic" be used in the name?
If the name of the illness is changed, should
The CFIDS Association change its name to match?
If the name of the illness is not changed, should
The CFIDS Association change its name to "The CFS Association"?
|
Yes: |
20 |
|
No: |
72 |
|
Don't care: |
13 |
|
