#73 Muscle studies, CFS tests, Name-change update
CFS-NEWS Electronic Newsletter
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 73 June 30, 1998 Washington DC
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MUSCLE STUDIES / CFS TESTS
NAME-CHANGE UPDATE
>>>1. Muscle study show dysfunction, and possible CFS subgroups
>>>2. Australian researchers seek to develop CFS test
>>>3. Possible CFS test prompts award for young scientist
>>>4. EDITORIAL: Change-the-name update
>>>5. U.S. Government coordinating committee meeting of April 29
>>>6. Awareness Day activities
>>>7. Canadian court accepts CFS
>>>8. NEWS BYTES: medical conference, American media, new books
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>>>1. Muscle study show dysfunction, and possible CFS subgroups
Two studies in Britain have shown muscle abnormalities in CFS
patients, and the results further suggest that there are different
subgroups within CFS.
Lane and colleagues from Charing Cross Hospital in London found that
while the CFS patients in their study generally showed various kinds
of muscle anomalies, not all the anomalies were found in all of the
patients, but rather different subgroups of patients had different
kinds of anomalies.
In the first study of the two studies, the authors found that CFS
patients responded differently to various tests than do sedentary
healthy controls. The researchers examined muscle biopsies from 105
CFS patients by histochemical preparations, and some biopsies were
examined by electron microscopy. In general, following exercise CFS
patients showed more type 1 muscle fibre predominance and infrequent
fibre atrophy, unlike what is expected in sedentary healthy people.
However, when the CFS patients were separated by their SATET
(sub-anaerobic threshold exercise test) responses, those showing a
positive response did not generally show the type 1 muscle fibre
predominance.
This study was published as
Lane RJ, Barrett MC, Woodrow D, Moss J, Fletcher R, Archard LC,
Muscle fibre characteristics and lactate responses to exercise in
chronic fatigue syndrome. J Neurol Neurosurg Psychiatry 1998 Mar;
64(3):362-367
The second study further explored the differences between CFS
patients who were SATET positive and SATET negative. The researchers
compared 10 SATET positive patients, 9 SATET negative patients, and
13 sedentary controls. Phosphorus magnetic resonance spectroscopy
was used to examine forearm muscle fibres.
The results showed that the positive patients had lower intracellular
pH, and lower ATP synthesis rate during recovery, compared to the
negative patients and the healthy controls. The authors stated that
these results support the view that CFS is likely not a single
disorder.
This study was published as:
Lane RJ, Barrett MC, Taylor DJ, Kemp GJ, Lodi R. Heterogeneity in
chronic fatigue syndrome: evidence from magnetic resonance
spectroscopy of muscle. Neuromuscul Disord 1998 May;
8(3-4):204-209
[Thanks to Ted Shaw for alerting CFS-NEWS to these studies.]
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>>>2. Australian researchers seek to develop CFS test
Ongoing research in Australia shows that exercised muscles generate
clearly abnormal responses in CFS patients, significantly more so
than expected for sedentary controls. This work had been reported at
the CFS medical conference in Sydney in February 1998, and more
recently in the May 29 edition of the Medical Observer. The lead
researcher has also appeared in a television news interview where he
stated that the test in development will help legitimize the plight
of CFS patients, and he cautioned against exercise as a treatment for
CFS, despite such a recommendation in the Australian draft guidelines
on managing CFS.
Medical conference report
Prof. Garry Scroop of the University of Adelaide reports that his
research team's studies show that CFS patients have significantly
different responses in exercise tests than do sedentary healthy
controls. Scroop and colleagues originally reported their work at
the February 1998 Sydney CFS Medical Conference.
That report described how five CFS patients were compared to five
sedentary controls, matched for gender, age, height and mass. The
patients tested significantly lower for length of exercise, peak work
load, and amount of work. Results that were not significant were
found for peak VO2, peak heart rates, VO2 levels at lactate threshold
(LT), and blood lactate concentration and VO2 at exhaustion.
The research team concluded that "while the work capacity of patients
with CFS is significantly less than sedentary controls, aerobic
capacity and the LT are not, suggesting that factors other than
so-called 'deconditioning' are responsible for the earlier fatigue
during exercise."
The conference abstract can be seen on the Internet at
http://www.networx.com.au/mall/cfs/meeting/researc2.htm#aerobic
Television news interview
On Australia's "Current Affair" news program, Prof. Scroop stated
that the lactic acid response to exercise by CFS patients was twice
that of healthy people, and that this clearly shows that these
patients have an illness that is not all in the mind. Furthermore,
Scroop stated, exercise is potentially damaging for these patients,
and he criticized the Draft Australian CFS Management Guidelines for
recommending exercise as a treatment for CFS patients. (The
Guidelines, originally scheduled for publication in May, have been
delayed due to revisions of the final draft.)
For further information about this story, see Moira Smith's special
web page at
http://www.spirit.net.au/~masmith/aus_info/scroop.htm
[This article was drawn largely from a report by Moira Smith, and
from the medical conference abstracts made available by Ted Shaw.
Thanks to Elizabeth Rechniewski for alerting CFS-NEWS to this story.]
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>>>3. Possible CFS test prompts award for young scientist
A national science award has been given to a young Canadienne who,
while working with a local panel of doctors, has found unusually low
levels of a certain blood enzyme in CFS patients.
Sixteen-year-old Dilnaz Panjwani of Toronto, daughter of psychiatrist
Dilkush Panjwani who helped with the research, found a highly
significant correlation between low blood levels of 2,3
diphosoglycerate (2,3-DPG) and patients with CFS. This enzyme plays
an important role in enabling blood to release oxygen in the human
body.
Panjwani was prompted to explore this avenue of research by a comment
in a 1971 paper by scientist William Oski. Panjwani first noted the
pattern in a group of 13 CFS patients she had assembled, and she then
duplicated the work in a second group of 18 patients. She is now
seeking a pharmaceutical company that will develop this research
further.
Panjwani won $4,500 from the Ernest C. Manning Awards Foundation for
this work. She has been the recipient of several other science
awards.
An article about this work appeared in the daily Toronto Star on May
22 and can be found on the Internet at
http://www.thestar.com/back_issues/ED19980522/
toronto/980522NEW01b_CI-GENIUS22.html
[Thanks to J.C. Olsen for assistance, and to Judith Lewis and Linda
Zimmerman for alerting CFS-NEWS to this story.]
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>>>4. EDITORIAL: Change-the-Name update
by Roger Burns
The results of CFS-NEWS Survey Two on the name-change shows strong
support among patients for any option that may result in an immediate
change of name, including the eponym option. The U.S. government CFS
Coordinating Committee was asked at its April 29 meeting to take
several steps on the name-change and stigma issues, but the
committee's official response was partial and indefinite.
The results of Survey Two can be seen at
http://www.cais.net/cfs-news/results-2.htm
Report on the April 29 government meeting
With the valued assistance of Congressman John Porter, I was able to
arrange to make a special presentation before the U.S. government's
CFS Coordinating Committee at its public meeting of April 29.
The meeting was chaired by Dr. Brian Mahy of the CDC.
In his own remarks preceding my presentation on these issues, Dr.
Mahy stated that the name of the illness was an international matter
which should not be decided by a national group such as the present
government Committee.
Kim Kenney, the representative of the CFIDS Association of America
who is on the government Committee, referred to her organization's
policy statement that welcomes a change of name when medical science
warrants such a change or when the public may become aware of an
individual of impeccable reputation who is associated with the
illness, for whom the illness might be named. Ms. Kenney stated that
there is no consensus among patients and scientists as to what
specific new name should be chosen.
In my own presentation before the government Committee, I described
the results of the new name-change survey issued in April, which
garnered some 250 responses by the time of the meeting. I quoted
several responses sent in by patients who described their desperation
about societal rejection -- friends, family and doctors -- and about
the stigma of the illness which is so strongly associated with the
current name.
I pointed out that the conflict over the name-change issue might
appear much more tractable if we remember that the essential interest
of the patients is about the stigma associated with the name, rather
than about any preference for a specific new name. One compromise
solution might be to choose an eponym, i.e to name the illness after
someone who is associated with the disease. And an eponym might be
used in tandem with the current name CFS rather than entirely
replacing the current name right away. Such a plan would minimally
interfere with the scientific aspects of choosing a new name.
I posed a series of related questions about name-change and stigma
issues which needed to be answered. I stated that it was very
important that the Committee's response to these issues be made in a
clear manner that will speak to the patients' experiences.
Since these numerous important questions likely could not all be
answered by the Committee that day, and since the Committee would
itself not meet for another six months, I proposed that an ongoing
panel be created to deal with these questions and to further develop
the name-change and stigma issues. The panel, as proposed, would be
comprised of scientists, patient advocates, and the U.S.
Surgeon-General, Dr. David Satcher, who nominally chairs the
government CFS Coordinating Committee.
Lastly, I asked the Committee to recommend that the U.S. Surgeon-
General, a very well known U.S. public health official, should make a
dramatic public announcement in high-profile manner, i.e. on the
television news, to help legitimize CFS and to hopefully announce any
change of name for the illness.
The Committee's members discussed the value of developing a public
announcement that would help legitimize CFS, to be issued at the time
of the upcoming AACFS medical conference in October. They seemed to
have a positive consensus to move forward with that point.
However, the Committee's acting chairman, Dr. Brian Mahy of the CDC,
cut short the Committee's discussion about these issues before any
decisions could be made during that portion of the meeting.
Sometimes, though, the Committee has saved some of its decision-
making for the end of its meetings.
At day's end, as the meeting's actions were being summarized before
adjournment, I was going to press the chairman to give the
Committee's members an opportunity to make decisions on the requests
I had outlined. But before I could do so, Committee member Kim
Kenney of the CFIDS Association of America announced that she would
draft a statement that the Committee would issue next October which
would help to legitimize CFS.
I pointed out that any public statement issued in the name of the
Committee -- a group which is, quite frankly, unknown to the public
-- would be relatively ineffective. It was important, I emphasized,
that such a statement be made in a high-profile manner by the U.S.
Surgeon-General. Dr. Mahy said that the Committee's statement would
be sent to the U.S. Surgeon-General. The meeting was then adjourned.
Commentary
Where are we now? Well, it seems that those who are pressing for a
name-change have been given half of half of half a loaf.
The government Committee did not get to comment on -- much less
decide on -- the proposal for an ongoing panel to further develop
these issues. They did not get to comment on why an eponym might be
a good or a bad idea. The government Committee did make some kind of
recommendation about a public statement to help legitimize the
illness. But the nature of this statement, and how and by whom it
will be publicized, is not at all clear.
Several questions remain outstanding.
Can CFS be given the legitimacy it deserves, based on current
scientific evidence, without also changing the name of the illness?
That would be extremely difficult.
Will the U.S. Surgeon-General soon make a highly publicized statement
on television that will go far to strongly legitimize CFS? I pray
that this will happen. But I have not (yet) seen anything from the
government's official CFS Committee that actively urges the Surgeon-
General in particular to do so.
And, where is the CFIDS Association of America (C.A.A.) in all this?
I had hoped that their policy statement of last March meant that they
were finally stepping up to the plate on the name-change/stigma
issue. But apparently, they have no intention of taking a lead.
Their stance seems to be: "If a change of name should somehow fall
from the skies -- we won't oppose it. Until then, you are all on
your own."
Rather than publicly opine, as C.A.A. has done, that there is no
consensus among scientists and patients on an appropriate new name,
why don't they take positive action to help to develop such a
consensus? Why not foster an exchange of ideas between scientists
and patients to explore this issue, and to encourage each side to
understand the other's viewpoint?
The CFIDS Association of America has quite apparently written off the
name-change issue, despite how much the name and the stigma of the
illness disrupts the lives of the many patients that that
organization represents.
If the CFIDS Association of America will not champion an issue that
is vital to the patients that it purports to represent, then who
shall do so?
These are tough questions. And it is sad that they must be asked.
I do hope something good *will* come from the Surgeon-General's
office about all of this. And it may -- IF influential leaders such
as the CFIDS Association of America will urge him, and the government
CFS Committee, to do so. But the current broad-based effort to get a
positive response about the name-change/stigma issue is getting long
in the tooth. And most reasonable people would expect that some
clear response would have been seen by now.
Until then, any effort to dramatically change the image of this
illness, despite the fact that the science to do so is already in
hand, will be very, very difficult.
I look forward to discussing next steps with those who are concerned
about these issues.
Roger Burns
Publisher, CFS-NEWS Electronic Newsletter
Promoter, Change the Name campaign
E-mail: CFS-...@MAELSTROM.STJOHNS.EDU
Postal: 2800 Quebec St. NW, Suite 1242
Washington, DC 20008-1240
USA
[Thanks to Linda Clement for assistance in distributing the Change
the Name Survey Two. Ms. Clement has a free CFS news service that is
available by e-mail. For further information, see
http://home.earthlink.net/~cfsmail .]
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>>>5. U.S. Government coordinating committee meeting of April 29
The U.S. CFS Coordinating Committee held a "Science Day" on April 28,
and conducted government business on April 29. The "Science Day" was
a researchers' workshop where pediatric aspects of CFS were discussed
by a number of scientists who hailed from a variety of disciplines.
On the business day, the government committee decided on a four-point
program for future goals as proposed by the CFIDS Association of
America. The goals that were adopted included: expanding research
(basic, clinical, treatment); adding to physician education;
improving access to Social Security disability benefits; and
providing coordination and ensuring accountability of federal agency
CFS programs. The committee also decided to draft a public statement
to help legitimize CFS (see the article above).
The C.D.C. was questioned by patient representative Kim Kenney of the
CFIDS Association of America about apparent sizable discrepancies in
their budget for CFS research. The CDC representative said that the
matter should be discussed later, but it did not come up again at the
meeting.
Many patient advocates gave public testimony to the committee, mostly
on the topics of CFS in youths and children, and about the need to
change the name of the illness. Many testifiers spoke quite
fervently, and a substantial number of them criticized the government
response to CFS.
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>>>6. Awareness Day activities
There were many CFS Awareness activities during the week of May 12.
In London, the "Blue Ribbon Awareness for M.E." organization
(B.R.A.M.E.) gave a presentation before the U.K. House of Commons
which was attended by 51 Members of Parliament. In Washington, some
100 Members of Congress were visited by volunteer lobbyists, led by
the CFIDS Association of America, who pressed for increased funds for
medical research for the illness.
The text of the presentations before the U.K. Parliament can be seen
at
http://freespace.virgin.net/me.support/Speeches.htm
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>>>7. Canadian court accepts CFS
A Canadian court has ruled that CFS is an acceptable basis for
granting long-term disability benefits. An Alberta judge ruled in
favor of Ms. K. Sharon Baillie who sought disability benefits from
Crown Life Insurance in an eight-year lawsuit.
The court's decision was hailed as ground-breaking by representatives
of the M.E. Association of Canada and the M.E. Society of Edmonton,
and by Ms. Baillie's lawyer. They expressed strong hope that this
ruling will serve as a precedent for other Canadians who deserve
benefits based upon disability due to CFS/M.E.. The legal decision,
made in March of this year, was described in the April 22 edition of
the daily Edmonton Journal.
[Thanks to Sandy Shaw for alerting CFS-NEWS to this story.]
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>>>8. NEWS BYTES
Future editions of CFS-NEWS will feature stories about the following
news items:
Medical conference
The bi-annual AACFS medical conference will be held in Boston on
October 12-14. Sometime in July CFS-NEWS will publish the
registration forms for attending this conference.
American media: CFS on Oprah
CFS will be one of the diseases featured on the widely-viewed Oprah
Winfrey television show to be broadcast on Wednesday, July 29.
New books
The following books are of interest:
Facing and Fighting Fatigue: a practical approach
by Benjamin Natelson, MD
Yale University Press
Chronic Fatigue and its Syndromes
by Simon Wessely, Matthew Hotopf, Michael Sharpe
Oxford University Press
Disability and Chronic Fatigue Syndrome: Clinical, Legal, and
Patient Perspectives
Edited by Nancy Klimas, MD and Roberto Patarca-Montero, MD, PhD
Haworth Press, Inc.
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