#72 -- Cortisol study, Survey on Name-Change
CFS-NEWS Electronic Newsletter
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 72 April 16, 1998 Washington DC
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NEW CORTISOL STUDY /
SURVEY ON CHANGING THE NAME
>>>1. Cortisol found higher in CFS patients
>>>2. CHANGE THE NAME -- NEW SURVEY
>>>3. Change the Name survey -- optional portion
>>>4. EDITORIAL: Changing the Name -- Myths and Realism
>>>5. Official notice of CFSCC meeting, April 28-29
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>>>1. Cortisol found higher in CFS patients
Contrary to a well known study by Demitrack, Straus et al. published
in 1991, a recent study by Wood, Wessely et al. finds that salivary
cortisols are higher in CFS patients than in healthy controls. The
citation for the current paper is:
Wood B, Wessely S, Papadopoulos A, Poon L, Checkley S.
Salivary cortisol profiles in chronic fatigue syndrome.
Neuropsychobiology. 1998; 37(1): 1-4.
The abstract for this paper is as follows:
Salivary cortisol profiles (hourly sampling over a 16-hour
period) of 10 patients with chronic fatigue syndrome (CFS) but
without concurrent depressive disorder were compared with those
of 10 healthy volunteers matched for age, sex and menstrual
cycle. The mean saliva cortisol concentration over the 16-hour
period was slightly but significantly greater in the patients
than the controls (p < 0.05). These findings are at variance with
earlier reports that CFS is a hypocortisolaemic state and suggest
that in CFS the symptom of fatigue is not caused by
hypocortisolaemia.
Dr. Mark Demitrack was recently asked by CFS-NEWS to comment on this
paper. Demitrack et al. published a well known study in 1991 that
indicated that cortisol levels were *lower* in CFS patients, the
opposite of the current Wood et al. findings. Demitrack's remarks
are as follows:
This report is a very interesting and well-done study which
provides data contrasting with several reports (ours included)
that have previously suggested a modest-centrally-mediated
reduction in the tone of the hypothalamic-pituitary-adrenal axis.
Heterogeneity in the biological phenotype of patients with CFS is
not unexpected. We are now well aware that the population of
individuals defined by the traditional criteria used to specify
a case of CFS probably encompasses an etiologically heterogeneous
group of people. Therefore, data with disparate results
underscores the need for more careful description of the methods
used to evaluate cases for study so that subsequent investigators
can be sure that they are actually testing the same types of
patients in their work (i.e., an apples to apples comparison, so
to speak).
In the case of our report, the patients were ill for a longer
duration of time, and in general had a broader mix of clinical
phenomenology than appears in the sample reported by Wood, et al.
Whether this is relevant to the differences in the results is not
clear, and should be considered in future work. Given the
complexity of the physiology of the HPA axis, and its close links
to other biological systems (e.g., the immune system), not to
mention its plasticity relative to other clinical events (e.g.,
the sleep-wake cycle), it is certainly reasonable to assume that
different patterns of dysfunction may be evident depending upon
the testing strategy employed and the particular patient
population studied.
What these results do tell us is that the HPA axis of patients
with CFS is different from what is seen in healthy individuals.
Placing a statement like this in proper context and teasing apart
cause from effect in this complex illness will have to await
further study.
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>>>2. CHANGE THE NAME -- NEW 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.
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CHANGE THE NAME -- SURVEY TWO
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): ______
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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-...@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
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>>>3. 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
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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.)
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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-...@cais.com
SEND BY POSTAL MAIL TO:
Change the Name Survey 2
c/o Roger Burns
2800 Quebec St. NW Suite 1242
Washington, DC 20008-1240
USA
SEND BY FAX TO: 1-317-899-6033
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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.cais.net/cfs-news/name.htm
The results of this survey will be posted as often as possible to
http://www.cais.net/cfs-news/results-2.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-...@MAELSTROM.STJOHNS.EDU .
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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.
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>>>4. EDITORIAL: Changing the Name -- Myths and Realism
by Roger Burns
Publisher, CFS-NEWS Electronic Newsletter
All sides of the change-the-name issue -- patients, scientists and
government officials -- seem to have some mistaken views of those
whose opinions differ from their own. Such misimpressions can
seriously obstruct a good resolution of this important issue.
Regardless of this problem, there *are* effective ways in which
progress can be made.
Below I describe the misunderstandings that I see as impeding
progress on changing the name and ending the stigma of this illness.
I conclude by outlining what next steps may be pursued to promote
progress. After results have come in for the survey shown above, I
will be recommending specific actions to the readers of this
newsletter. Results and some recommendations will appear in the next
CFS-NEWS, which should be published before the meeting of the U.S.
CFS Coordinating Committee on April 29 which will take up the
name-change issue.
Myths within the patient community
Myth #1 -- THERE IS NOTHING TO LOSE BY WAITING FOR THE MOST
SCIENTIFIC NAME. Reality: There may be much to lose. Two points in
particular:
(1) There are many patients for whom each day of continued rejection
by doctors, family, threatened loss of job, etc. is a painful and
severe disruption to their lives, and in some instances can lead to
desperate measures.
(2) Many scientists are now discussing splitting up CFS into
subgroups. This should be done and will make for better science.
But some medical officials will insist that we then name and
characterize each subgroup separately, and not try any further to
legitimize or re-name the over-all category of CFS. Question: Will
each subgroup be fully legitimized by the scientific community?
Isn't it true that the sickest of the CFS patients are the most
difficult to research, and will likely end up in some miscellaneous,
psychiatrized category that will continue the old stigma, if not
worsen it? It may be vital to address the stigma and the name-change
*now*.
Myth #2 -- SCIENTISTS MAY CHOOSE A NEW PHYSIOLOGIC NAME RIGHT AWAY IF
WE PUSH THEM HARD ENOUGH. Reality: Scientists have already stated
that a new physiologic name must not be chosen until we have more
scientific evidence than we have now, and they do not know when that
will be. (See reports about last October's meeting of the U.S. CFS
Coordinating Committee.)
Myth #3 -- RECENT IMPORTANT RESEARCH ABOUT CFS WILL SURELY PROMPT
SCIENTISTS TO RE-NAME THIS ILLNESS VERY SOON. Reality: None of the
recent impressive studies about CFS have been accepted widely enough
to make scientists feel comfortable about moving forward with a name
change in the foreseeable future. Doubts about the Suhadolnik marker
were cast at the October '97 CFSCC meeting. Lerner's work on heart
problems has not been confirmed by other researchers. The
Streeten/Bell research on low blood volume was recently presented to
the staff of the CDC who expressed disinterest in the work.
Myth #4 -- THE NEW VARIANT OF "M.E.", "MYALGIC ENCEPHALOPATHY", COULD
BE WIDELY ADOPTED BY SCIENTISTS VERY SOON. Reality: scientists
generally have not commented yet on "myalgic encephalopathy", so its
prospects for rapid adoption are unknown. On the plus side, that
name has already appeared in the scientific literature. But on the
other hand, the fact that scientists have ruled out any physiologic
name for the foreseeable future is not encouraging.
Myth #5 -- EFFORTS TO PUSH FOR A NAME-CHANGE MIGHT SERIOUSLY DETRACT
FROM GETTING MORE RESEARCH FUNDING. Reality: Those who are the most
involved in funding would play the least additional role in the
name-change issue. There really isn't much competition for attention
between the two efforts.
Funding for U.S. research is allocated by Congress and is spent by a
grants committee within NIH. Congress is already on board with a
name change, thus very little of their additional time need be spent
to assist this effort. The NIH grants committee would play almost no
role in a name change. Name issues are usually in the hands of the
CDC, which itself plays no role in funding.
Myth #6 -- WE DON'T NEED THE COOPERATION OF SCIENTISTS TO GET THE
NAME CHANGED. Reality: If there is to be any high-profile campaign
to promote a new name for this illness, the cooperation of the
scientific community will be absolutely essential. If a group of
patients who have been accused of being psychiatric cases try
en masse to declare their own new name, and then that announcement is
countered by scientists and government officials when they are asked
by the press to comment and they say that there is not enough
evidence about CFS to warrant a new name, then our image could end up
being worse than it was before. Prof. Showalter's disparaging view
of CFS patients would then look quite correct.
Myth #7 -- IF THE PATIENTS CHOOSE THEIR OWN NEW NAME, THEY CAN FORCE
THE SCIENTISTS TO ADOPT IT. Reality: There are two reasons why
this won't work.
(1) Most scientists look down on CFS as a field of research. And
all scientists' careers depend largely on their reputations among
their professional peers. If some scientists are seen as "caving in
to political pressure" about a scientific issue such as the proper
choice of name for a disease, then they may be crippled in their
future careers.
(2) Scientists have a lot of professional pride. If a group of
'civilians' attempts to micro-manage decisions that they should be
making, they will be offended and likely will not cooperate.
I doubt that scientists will give in to a directive from outsiders to
"choose the name that we have selected". Rather than risk their
pride and their careers, they might sooner leave the field of CFS to
study other diseases. The more effective request will be to get
scientists to commit to some kind of name-change soon, and for them
to accept patient input on what is to be avoided in a new name in
order to be sure there won't be further stigmatization.
Myths among medical officials
Myth #1 -- EACH CFS PATIENT INSISTS THAT THERE BE A DIFFERENT NAME
FOR THE ILLNESS, SO NO SOLUTION IS POSSIBLE. Reality: This is by no
means clear, and the survey in this newsletter should go far to
clarify the truth of this matter. The results of last year's
CFS-NEWS survey showed that a great many alternative names were
equally acceptable to the patients, much more so than keeping "CFS"
in place. But those results have been misinterpreted by some to
indicate that patients were each strongly insisting on their own
favorite name, to the exclusion of all other options. The answers
asked for in the current survey are structured so as to minimize that
kind of misinterpretation.
Myth #2 -- EPONYMS HAVE ALMOST NO SUPPORT AMONG PATIENTS. Reality:
A careful reading of last year's survey results shows that while
eponyms were not among the patients highest choices, they were
nonetheless largely preferred over keeping the name "CFS" intact.
The current survey will make this issue more clear.
Myth #3 -- PATIENTS CLEARLY WANT TO WAIT UNTIL SCIENTISTS MAY CHOOSE
A NEW PHYSIOLOGIC NAME FOR THE ILLNESS. Reality: There is no
evidence that makes this clear, and a plethora of anecdotes suggest
otherwise. The current survey should clarify this issue.
What can be done
It will be best to consider specific actions *after* we have seen
what we are all thinking, as revealed in the results of the current
survey.
If scientists and/or government officials will move soon on a program
to change the name of the illness and to develop a campaign to
overcome its stigma, it may be best to focus on drawing them along in
such a program. If they will take no action in the foreseeable
future, it may then be best for patients to develop a program that
will do the most to end the stigma but that will also do the least to
interfere with possible future decisions by scientists to change the
name in a positive way.
The results of the current survey will appear on a web page at
http://www.cais.net/cfs-news/results-2.htm
and will be published in the next editions of this newsletter. Again
I plan to publish initial results before the April 29 meeting of the
U.S. CFS Coordinating Committee.
I will be making a presentation at that meeting and otherwise talking
with government officials about these issues. The points I plan to
raise will include the following:
- There is a possibility for compromise on the name-change since the
most fundamental concern of patients does not really clash with that
of scientists. The essential concern of patients is the stigma of
the illness as it is experienced in society at large and from
clinicians, rather than any preference for any specific new name.
Whereas the scientists' essential need is that any new name that may
be chosen must conform to their professional principles.
-- The U.S. government could help by adopting its own limited policy
on a name-change, which it can do while still respecting the
scientific community's need to choose a name that they use within
their own professional sphere. The advantage of a government-only
name is that it can be used in an educational campaign, and it need
not be chosen through a long process of convening several scientific
meetings. It's choice should, however, be guided by strong input
from both scientists and name-change advocates. (Admittedly, this
recommendation and the next one may be helpful only to patients in
the USA.)
-- The name-change process would benefit greatly by leadership from
an independent official who has the respect of the medical community
but whose career does not depend on getting his/her own research
published, nor upon getting his/her research grant requests approved.
We should look to the U.S. Surgeon-General to play an important role
in this process. (In decades past, the U.S. Surgeon-General took the
lead in announcing that smoking tobacco is bad for one's health -- a
politically courageous action back at that time. This is the kind of
help that the CFS community could use.)
-- The U.S. CFS Coordinating Committee seems to be burdened with many
ongoing projects and may not be able to give the name-change issue
the attention that it deserves. There needs to be a separate process
that can handle this issue, and do so in a timely fashion. There
should be a separate committee or forum that addresses the
name-change, and it needs to include both scientists and name-change
advocates.
For now, please respond to the survey shown above. Again, it will be
best to consider further actions *after* we have seen the results of
the current survey. Interim results will be published before the
April 29 meeting.
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>5. Official notice of CFSCC meeting, April 28-29
The U.S. CFS Coordinating Committee (CFSCC) will hold a business
meeting in Washington, D.C. on Wednesday, April 29. The meeting is
open to the public and anyone can request beforehand to speak,
however only 12 speaking slots are available for 5-minute speeches
and the likelihood is that most requests will need to be turned down.
(Almost all of the slots have already been filled as this newsletter
goes to press.) The name-change issue will be discussed by the
committee for approximately 10 minutes, separate from any comments by
public speakers.
The CFSCC is also holding a "science day" on the previous day,
Tuesday, April 28. The topic will be CFS research in adolescents,
and there will be presentations by scientists from various
disciplines to discuss how this field of research can be developed
further.
--------------------------------------------------------------
Federal Register: April 13, 1998 (Volume 63, Number 70)]
[Notices, Page 18028, DOCID:fr13ap98-65]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
Chronic Fatigue Syndrome Coordinating Committee: Meeting
In accordance with section 10(a)(2) of the Federal Advisory
Committee Act (Pub. L. 92-463), the Centers for Disease Control and
Prevention (CDC) announces the following committee meeting.
Name: Chronic Fatigue Syndrome Coordinating Committee (CFSCC).
Time and Date: 8:30 a.m.-4 p.m., April 28, 1998. 9:30 a.m.-5
p.m., April 29, 1998.
Place: Hubert H. Humphrey Building, Rooms 703A and 800, #200
Independence Avenue, SW, Washington, DC 20201.
Status: Open to the public, limited only by the space available.
The meeting rooms will accommodate approximately 100 people.
Notice: In the interest of security, the Department has
instituted stringent procedures for entrance to the Hubert H.
Humphrey Building by non-government employees. Thus, persons
without a government identification card will need to provide a
photo ID and must know the subject and room number of the meeting
in order to be admitted into the building. Visitors must use the
Independence Avenue entrance.
Purpose: The Committee is charged with providing advice to the
Secretary, the Assistant Secretary for Health, and the
Commissioner, Social Security Administration (SSA), to assure
interagency coordination and communication regarding chronic
fatigue syndrome (CFS) research and other related issues;
facilitating increased Department of Health and Human Services
(HHS) and agency awareness of CFS research and educational needs;
developing complementary research programs that minimize overlap;
identifying opportunities for collaborative and/or coordinated
efforts in research and education; and developing informed
responses to constituency groups regarding HHS and SSA efforts
and progress.
Matters To be Discussed: Agenda items will include the National
Institutes of Health state of the art workshop regarding CFS in
adolescents; updates from HHS agencies; CFS information and
education; and CFSCC discussion of workshop regarding CFS in
adolescents.
Agenda items are subject to change as priorities dictate.
Public comments will be received on the April 29, 1998, meeting
for approximately 60 minutes. Public statements presented at this
meeting should not be repetitive of previously submitted oral or
written statements. Persons wishing to make oral comments should
notify the contact person listed below no later than close of
business on April 24, 1998. All requests to make oral comments
should contain the name, address, telephone number, and
organizational affiliation of the presenter. These comments will
become a part of the official record of the meeting. Due to the time
available, public comments will be limited to five minutes per
person. Copies of any written comments should be provided at the
meeting; please provide at least 100 copies.
Contact Person for More Information: Lisa Blake-DiSpigna,
Executive Secretary, CDC, 1600 Clifton Road, NE, M/S C19,
Atlanta, Georgia 30333, telephone 404/639-3227, fax 404/639-4138.
Dated: April 3, 1998.
Nancy C. Hirsch,
Acting Director, Management Analysis and Services Office,
Centers for Disease Control and Prevention (CDC).
[FR Doc. 98-9618 Filed 4-10-98; 8:45 am]
BILLING CODE 4163-18-P
===================================================================
CFS-NEWS (ISSN 1066-8152) is an international newsletter published
and edited by Roger Burns in Washington D.C. It is distributed:
through the "CFS echo" (discussion group) on the Fidonet volunteer
network of BBSs; via the STJOHNS Listserv on Internet; and a USENET
Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on
the Project ENABLE BBS in West Virginia USA at telephone 1-304-759-
0727 in file area 23, and the valuable patient resource file named
CFS-RES.TXT is available there too. Suggestions and contributions
of news may be sent to Roger Burns by Internet e-mail to
CFS-...@MAELSTROM.STJOHNS.EDU, or at telephone 1-202-966-8738, or
postal address 2800 Quebec St NW, no. 1242, Washington DC 20008 USA,
or post a message to the Internet CFS-L group or to newsgroup
alt.med.cfs.
Copyright (c) 1998 by Roger Burns. Permission is granted to excerpt
this document if the source (CFS-NEWS Electronic Newsletter) is
cited. Permission is also granted to reproduce the entirety of this
document unaltered. This notice does not diminish the rights of
others whose copyrighted material as so noted may be quoted herein.
All trademarks, both marked and not marked, are the property of
their respective owners.
===================================================================
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document at http://www.cais.net/cfs-news/faq.htm . That document
can be retrieved via e-mail by creating a message which says GET CFS
FAQ and send to address LIST...@MAELSTROM.STJOHNS.EDU .
The content of this independent newsletter and the accuracy of the
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To get a free subscription via Internet e-mail, send a message in
the form of SUB CFS-NEWS <your> <name> to
LIST...@MAELSTROM.STJOHNS.EDU . To get back issues, see the
Internet web page at http://www.cais.net/cfs-news/cfs-news.htm or
send an e-mail message which says GET CFS-NEWS INDEX to address
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=====================================================================