published April 16, 1998
THIS SURVEY IS NOW CLOSED
See the editorial that was published with this survey
See also the results page for this survey
Those who advocate changing the name "chronic fatigue syndrome" see several ways in which their goal may be achieved. One of those ways is to influence the upcoming meeting of the U.S. CFS Coordinating Committee (CFSCC), scheduled for April 29. That committee may have some misimpressions about patients' views on name-change issues. Therefore, readers are asked to respond to the survey shown below, and the results will be presented to the CFSCC at its April 29 meeting.
The government committee
The CFSCC is comprised of government officials, scientists and patient advocates. It has a responsibility to address the name-change issue, as requested by the U.S. Congress. At their last semi-annual meeting on October 22, the CFSCC discussed the possibility of a new physiologic-based name for the illness, and they decided that there is not yet enough evidence to support any specific new name at this time. There was also criticism of the term "myalgic encephalomyelitis". However, there was little discussion of the eponym option (that is, naming the disease after a scientist, doctor or patient who is associated with this illness -- like "Parkinson's Disease"), and no discussion of the new variant of "M.E.", specifically "myalgic encephalopathy".When should the name be changed?
Also, many CFSCC members have an impression that while patients want the current name changed, they nonetheless clearly prefer for a name-change to wait until scientists may find a fully accepted disease marker, or some other evidence that clearly shows how this disease works.Last year's survey on name-change issues showed that about 90 percent of patients want the name "chronic fatigue syndrome" changed to some other name that will be much less vulnerable to being stigmatized. But those results didn't make clear how long patients were willing to wait for the most scientific name to be chosen, or whether an eponym should be pressed for much sooner.
Who will choose?
The basic questions of "WHAT is the best new name that should be chosen?" and "WHEN should the name be changed?" might be answered very differently depending on whether a scientists' group was moving to make a change, or whether patient groups might be promoting an independent awareness campaign.There are too many issues in these scenarios to be covered in one survey. Therefore the survey that appears below will focus on WHAT SHOULD BE RECOMMENDED TO THE GOVERNMENT COMMITTEE that is meeting on April 29. After news about that meeting's actions have been reported, this newsletter will then issue a another survey to ask patients and their organizations HOW THEY WISH TO PROCEED FROM THERE.
The new survey
Below is the new survey that attempts to clarify for the CFSCC government committee the current controversies about what patients may be demanding about this issue. This survey is in two parts. The first part contains ten questions, the second contains eleven.Please, at a bare minimum, fill out your responses to the first part of the survey. And if you have the additional energy and stamina, please also respond to the second part of the survey.
Personal information
(All personal data will be kept confidential.)
1) Name: __________________________________________
Address: __________________________________________
__________________________________________
City: ______________________________________________
State/Zip code: _____________________________________
Country: __________________________________________
Telephone: _________________________________________
(Note: Your street address and telephone number will be kept
confidential in all circumstances. And unless you give
permission in Question 20 to release your name and the city where
you live, those will be kept confidential also.)
2) Please indicate those that apply to you:
A. I am a patient who has CFS
B. I have a family member or friend who has CFS
C. I am a health care professional who is concerned about CFS
D. other (FILL IN THE BLANK): ______________________________
Choose any or all that apply (A, B, C and/or D): ___________
3) Do you want the name "chronic fatigue syndrome" to be changed?
Choose Yes or No: _____
If you answer "No" to this question, then please SKIP DOWN TO
QUESTION 18 IN PART TWO OF THIS SURVEY (IN THE NEXT ARTICLE). DO NOT
ANSWER QUESTIONS 4 THROUGH 17 IMMEDIATELY BELOW.
4) How important is it that any announcement of a new name be
accompanied by a strong educational campaign about the illness?
A. Not important, a new name is all that is needed.
B. A good idea, but is not vital.
C. Very important. Without such an educational campaign, the new
name may not receive any better treatment than the current name.
Choose only one (A, B or C): ______
5) How important is it that any announcement of a new name, and any
associated educational campaign, be made through a high profile press
conference on television, radio, newspapers that will reach most
average citizens as well as doctors, employers, etc.?
A. Not important.
B. A good idea, but is not vital.
C. Very important. This is the best way to quickly educate most
elements of society.
Choose only one (A, B or C): ______
6) A new physiologic-based name for the illness would sound the most
scientific. But scientists have stated publicly that they want to
wait until there is more evidence before choosing the most proper new
physiologic name, and they do not know how long the wait for more
evidence will be.
On the other hand, an eponym might be chosen right now (that is,
naming the disease after a scientist, doctor or patient who is
associated with this illness). Yet an eponym might sound less
scientific.
Which of the following views do you think should be presented to the
U.S. CFS Coordinating Committee??
A. Do not choose an eponym now -- rather, wait for further evidence
to get the most scientific-sounding name
B. Choose an eponym now, and also press later for the most
scientific name to be chosen when more evidence may support that
C. Just press for an eponym now, do not also try to change the name
again after an eponym has been adopted
Choose only one (A or B or C): ______
7) Should the name "myalgic encephalopathy" be recommended to the
government committee?
While many scientists have said that the time is not right to create
an entirely new physiologic name for CFS, and several scientists have
also criticized the old name "myalgic encephalomyelitis", there has
not been much discussion by scientists of a revised variant of M.E.,
that is, "myalgic encephalopathy". This name has appeared in
scientific literature and many patients look favorably on it. But
since scientists have not discussed it yet, it is not known whether
they believe there is a good case for or against this alternative.
What do you think of recommending this name to the government
committee?
A. Better to wait for a more justified scientific name
B. Acceptable (myalgic encephalopathy)
C. Strongly recommend "myalgic encephalopathy"
Choose only one (A, B or C): ______
8) Some government officials claim that CFS patients have such widely
differing opinions and are all insisting that different new names be
chosen, that therefore the government must not favor any specific new
name since the patients are so divided.
Are the patients really as divided as the government claims? This
survey asks -- if you couldn't get your own favorite choice of a new
name selected, would you then want to keep the old name "chronic
fatigue syndrome"?
A. I strongly urge that we adopt (FILL IN THE BLANK)
__________________________________ as the new name, and if we don't
get that name then it would be better to keep the name as CFS.
B. Even if I don't get my own exact preference for a new name, I
want the name CFS changed, as long as the new choice helps to end
the stigma of the current name.
Choose only one (A or B): ______
(Note: the government committee has already ruled out physiologic
names until more evidence appears. And eponyms are asked about in
Part Two of this survey, question 11.)
9) Do you believe that the following is true?
"If too many patients insist on having only
their own favorite choice of new name selected,
we might not get the name changed at all."
Choose True or False: ____________________
10) Scientists and name-change advocates have never formally
discussed name-change issues together. How important do you think it
is that there be a panel of both scientists and name-change advocates
to discuss WHEN and HOW SOON a change of name should be made, as well
as other name-change issues?
A. Not important
B. Somewhat important
C. Very important
Choose one (A, B or C): ______
----------------------------------------------------------
Thank you for your participation in this survey. If you are able to,
please also answer the questions in the next segment as well.
Send all of your survey answers to any of the following addresses.
However, since timely responses are critical to getting these results
to the government CFS Coordinating Committee, it is best to send in
your responses by Internet e-mail, if possible.
SEND BY E-MAIL TO: cfs-news@cais.com
OR SEND BY POSTAL MAIL TO:
Change the Name Survey Two
c/o Roger Burns
2800 Quebec St. NW Suite 1242
Washington, DC 20008-1240
USA
OR SEND BY FAX TO: 1-317-899-6033
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
Change the Name survey -- optional portion
The purpose of this survey has been explained in the article above.
Please be sure that you have filled out the main survey above before
you may respond to the questions in this optional portion below.
11) EPONYMS. People may feel differently about the eponym option
depending on which eponym might be chosen. Please show your
preferences for the specific alternatives shown below.
Also note: if an eponym is considered it may likely be for a deceased
scientist, such as the first three choices below. Living people
could generate too much politics in the name-selection process. As
for a patient-based eponym, since there is no biological marker in
hand, the choice of any specific patient could always be undermined
by later research. Therefore many scientists may oppose the
selection of a patient before a marker has been established.
Nevertheless, to make a broad survey of sentiments, the choices below
do include some living scientists and one possible CFS patient. The
questions below assume that each alternative might either be used
alone or within some multi-named eponym, e.g. "Ramsay-Gilliam-Osler
Syndrome".
Specific names that might be included within an eponym
------------------------------------------------------
Melvin Ramsay (scientist, deceased) -- a British physician who
specialized in infectious diseases. He lectured in that field at the
University of London and served as President of the Association for
the Study of Infectious Diseases. He also served as a consultant to
the British Ministry of Health regarding smallpox. Ramsay
investigated some 300 cases of CFS/M.E. in the London Royal Free
Hospital outbreak of 1955. Since that time he had been active in
publishing research papers and making conference presentations about
CFS/M.E. Ramsay coined the term "myalgic encephalomyelitis" which
first appeared in the medical journal Lancet in 1956.
A. Strongly recommend Ramsay as the eponym, or as part of a
multi-named eponym
B. Acceptable
C. Better to wait for a new scientific name
Choose one (A, B or C): ______
Alexander Gilliam (scientist, deceased) -- a U.S. Public Health
Service officer for 25 years who focused on infectious diseases and
cancer epidemiology. His work included poliomyelitis, typhus and
malaria, and as an NIH scientist he did work specifically on
leukemia, cervical carcinoma, and lung and breast cancer. He later
became a professor of epidemiology at his alma mater, Johns Hopkins
University. Gilliam researched 198 cases of a CFS outbreak at the
Los Angeles County General Hospital in 1934 and he published his
findings on that outbreak in a 90-page book.
A. Strongly recommend Gilliam as the eponym, or as part of a
multi-named eponym
B. Acceptable
C. Better to wait for a new scientific name
Choose one (A, B or C): ______
Sir William Osler (scientist, deceased) -- a Canadian physician who
in his day had been described as the "most influential physician in
history". He wrote the authoritative textbook "The Principles and
Practice of Medicine". Osler was a professor at several medical
schools including Oxford, Johns Hopkins, and the University of
Pennsylvania. Although Osler was not known for research about CFS,
he was renowned for tackling the general problems of diagnosis, a
challenge by no means foreign to CFS issues.
A. Strongly recommend Osler as the eponym, or as part of a
multi-named eponym
B. Acceptable
C. Better to wait for a new scientific name
Choose one (A, B or C): ______
Daniel Peterson (scientist, living) -- an American doctor of Incline
Village, Nevada who investigated the 1984 outbreak there, and who has
conducted FDA-approved trials of the drug Ampligen for treatment of
CFS.
A. Strongly recommend Peterson as the eponym, or as part of a
multi-named eponym
B. Acceptable
C. Better to wait for a new scientific name
Choose one (A, B or C): ______
David Bell (scientist, living) -- an American pediatrician who
investigated the 1985 CFS outbreak in Lyndonville, New York and who
helped to research the Defreitas virus in the late 1980s. Bell has
published research about low blood volume anomalies in CFS, and he
recently served on the faculty of Harvard Medical School.
A. Strongly recommend Bell as the eponym, or as part of a
multi-named eponym
B. Acceptable
C. Better to wait for a new scientific name
Choose one (A, B or C): ______
Paul Cheney (scientist, living) -- an American doctor who with Dan
Peterson investigated the 1984 Nevada outbreak, and who also helped
to research the Defreitas virus in the late 1980s.
A. Strongly recommend Cheney as the eponym, or as part of a
multi-named eponym
B. Acceptable
C. Better to wait for a new scientific name
Choose one (A, B or C): ______
Florence Nightingale (patient, deceased) -- A British nurse who
founded the first formal school for nursing and who inspired the
creation of the International Red Cross. For decades she had an
undiagnosed, severely debilitating illness whose symptoms were
similar to CFS. Patient groups have widely promoted Nightingale's
birthday, May 12, as International CFIDS/M.E. Awareness Day
A. Strongly recommend Nightingale as the eponym, or as part of a
multi-named eponym
B. Acceptable
C. Better to wait for a new scientific name
Choose one (A, B or C): ______
12) Most people agree that a new physiologic-based name for the
illness would sound the most scientific. But scientists have said
publicly that they don't wish to choose such a new name until there
is an accepted biological marker or other evidence that clearly
indicates the disease process. Yet it is not clear when such
evidence may become available and be accepted by scientists. One
alternative is to press for an eponym to be adopted now.
How long should patients wait for a biological marker of other
scientific evidence before demanding that an eponym be chosen?
Choose only one of the following:
A. Wait no matter how many years it takes. An eponym is not a good
idea.
B. Wait 10 years for more evidence, then press for an eponym
C. Wait 5 years for more evidence, then press for an eponym
D. Wait 2 years for more evidence, then press for an eponym
E. Wait 1 year for more evidence, then press for an eponym
F. Wait 6 months for more evidence, then press for an eponym
G. Wait 3 months for more evidence, then press for an eponym
H. Do not wait any longer, press for an eponym right now.
Choose only one (A, B, C, D, E, F, G or H): ______
13) What are the main reasons that the name should be changed?
A. will help end the rejection of CFS patients by doctors,
friends, family, employers, disability insurers, etc.
B. may help get more medical research
C. other reasons (FILL IN THE BLANK): ______________________
_________________________________________________________
Choose any of A, B or C (can choose more than one): __________
14) Have you personally experienced prejudice against you, or have
you been rejected by a doctor, or family, friends, employers,
insurers, or anyone else, because you have this illness?
Choose Yes or No: __________
15) Are you aware of other CFS patients who have experienced such
prejudice or rejection?
Choose Yes or No: __________
16) Do you think that the stigma of this illness has changed in
recent years?
A. Stigma has increased
B. Stigma has stayed the same
C. Stigma has become less
D. Don't know whether there had been any change
Choose only one (A, B, C or D): ______
17) Some people say that it will be so difficult to get scientists
to agree to a name-change that patients may not be able to get BOTH
an eponym now AND the most scientific name later. That is, patients
may have to settle for having either one or the other.
This might not turn out to be true, but if it does prove accurate,
and if, regardless, there were an educational campaign to accompany
the announcement of a new name in any case, then which of the
following would you prefer:
A. If we can only have one, then press for an eponym now -- forgo
a more scientific name later
B. If we can only have one, then wait for the most scientific name
-- do not press for an eponym now
Choose only one (A or B): ______
18) IF YOU STATED AT THE BEGINNING OF THIS SURVEY THAT YOU DO NOT
WANT THE NAME "CFS" CHANGED, THEN PLEASE ANSWER THIS QUESTION AND
THOSE THAT FOLLOW. (Those who do want the name "CFS" changed should
skip to the next question.)
According to previous surveys, most patients want the current name
changed. Do you believe that
A. The name "chronic fatigue syndrome" has gained so much
acceptance in recent years that to change the name now would
lead to confusion and a loss of whatever acceptance we have
gained so far.
Do you agree, choose Yes or No: _______
B. The reason(s) that I want to keep the name "chronic fatigue
syndrome" in place is (FILL IN THE BLANK):
___________________________________________________________
___________________________________________________________
___________________________________________________________
C. If I knew that many patients other than myself were still
experiencing prejudice and rejection about this illness from
doctors, friends, families, employers, etc., then I would want
the name "chronic fatigue syndrome" changed.
Do you agree, choose Yes or No: _______
19) EVERYONE PLEASE ANSWER THIS QUESTION AND THE REST THAT FOLLOW.
Do you believe that the scientific community will soon accept a
biological marker or other evidence that clearly indicates the
specific disease process for CFS? (If that will happen soon, it
might be best for name-change proponents to drop the eponym option
and just press for a new physiologic-based name.)
How soon do you think full acceptance by scientists of a marker or
other evidence is very likely to occur?
A. full acceptance very likely within 3 months
B. full acceptance very likely within 6 months
C. full acceptance very likely within 1 year
D. full acceptance very likely within 2 years
E. full acceptance very likely within 5 years
F. full acceptance very likely within 10 years
G. I have no idea when scientific evidence may be fully accepted
Choose only one (A, B, C, D, E, F or G): ______
20) Please add any additional comments that you may wish to include
about any of the issues covered in this survey.
_____________________________________________________________
_____________________________________________________________
_____________________________________________________________
21) CONFIDENTIALITY. Would you permit your name, your general
location (not your street address or phone number) 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. These reports might appear: in the CFS-NEWS newsletter;
on the Change the Name web site; in reports to policy makers in the
U.S. government, or to scientific groups.
I will allow my responses and my name and general location to be
quoted in public, but not my street address or phone number.
Choose Yes or No: _____
(Your personal information will remain confidential if you do not
answer this question.)
[CFS / M.E. Information page] [CFS Frequently Asked Questions] [CFS Quick Index]
Again, thank you for your participation in this survey. Send all of your survey answers to any of the following addresses. However, since timely responses are critical to getting these results to the government CFS Coordinating Committee, it is best to send in your responses by Internet e-mail if possible.
SEND BY E-MAIL TO: cfs-news@cais.comSEND BY POSTAL MAIL TO:
Change the Name Survey 2SEND BY FAX TO: 1-317-899-6033
c/o Roger Burns
2800 Quebec St. NW Suite 1242
Washington, DC 20008-1240
USA
RESOURCES
To keep up to date on this issue via the Internet, follow the on-going discussion in the CFS-L / alt.med.cfs group, and check out the Change-the-Name web page often.The main Change-the-Name web page is at
http://www.cfs-news.org/name.htm The results of this survey will be posted as often as possible to
http://www.cfs-news.org/results2.htm The discussion group can be followed through the mailing list CFS-L or through the newsgroup alt.med.cfs. For assistance in joining either, write to CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU .
Acknowledgments
Thanks to the 50-odd people on the CFS-L and CFIDS-L discussion groups who helped to develop this survey, and in particular to John Baldwin, Harry Jerolleman and Linda Moon.
Also note these other important CFS information resources:
This page is maintained by Roger Burns of Washington, D.C.
E-mail: cfs-news-request@maelstrom.stjohns.edu