CFS-NEWS: #69 -- Psychiatric bias, Congress listens
CFS-NEWS Electronic Newsletter
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 69 January 31, 1998 Washington DC
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PSYCHIATRIC BIAS IN CFS RESEARCH /
CONGRESS HEARS ABOUT CFS, NAME-CHANGE
>>>1. Review article says psychiatric view of CFS based on bias
>>>2. U.S. Congress hears about CFS and name change
>>>3. Brain test anomalies found by Harvard researcher
>>>4. Australian report on CFS
>>>5. Call for abstracts: AACFS conference in Boston, Oct. 1998
>>>6. Osteopathic treatment found helpful, reports U.K. researchers
>>>7. Treatment of medically unexplained symptoms discussed in BMJ
>>>8. CFS medical conference in Sydney, Feb. 12 and 13
>>>9. EDITORIAL: Change the Name -- Update
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>>>1. Review article says psychiatric view of CFS based on bias
A review article by several psychologists claims that flaws in the
case definition of CFS and in the design of early epidemiological
studies have "led to inaccurate and biased characterizations of CFS"
which incorrectly favor a psychiatric view of the illness.
The literature citation for the article is:
Jason LA, Richman J, Friedberg F, Wagner L, Taylor R, Jordan KM.
Politics, Science, and the Emergence of a New Disease: The Case of
Chronic Fatigue Syndrome. American Psychologist, Sept. 1997
52(9):973-983.
The following summary appeared in the Fall '97 edition of the CFIDS
Chronicle, and is copyrighted (c) 1997 by the CFIDS Association of
America, Inc., PO Box 220398, Charlotte NC 28222-0398, U.S.A. (Their
toll-free number is 1-800-44-CFIDS and their web page is at
http://www.cfids.org ).
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This article examines the mind/body controversy by "exploring how the
establishment of diagnostic criteria and the design of early
epidemiological studies led to inaccurate and biased
characterizations of CFS." Dr. Leonard Jason of DePaul University
and his colleagues examine a broad range of research and the factors
that contributed to a bias toward psychiatric diagnoses. These
factors include the case definitions, limitations in the design of
the frequently used Diagnostic Interview Schedule (DIS, a tool for
diagnosing psychiatric disorders), and flaws in early epidemiological
studies. In combination, those factors led to an underestimation of
the prevalence of CFS and an overestimation of co-existing or
pre-existing psychiatric disorders in patients.
The Australian and British case definitions and the revised 1994 U.S.
definition do not consider pre-existing depression or other
psychiatric disorders and exclusionary for CFS. Jason and his
colleagues believe that has contributed to the controversy. They
write:
Fatigue, sleep disturbances and poor concentration occur in both
depression and CFS. It is important to differentiate those with
a principal diagnosis of major depressive disorder from CFS.
This is particularly important because it is possible that some
patients with major depressive disorder also have chronic fatigue
and four minor symptoms that can occur with depression (e.g.,
unrefreshing sleep, joint pain, muscle pain, impairment in
concentration). Fatigue and these four minor symptoms are also
defining criteria for CFS. Is it possible that some patients
with a primary affective disorder could be misdiagnosed as
having CFS? Some CFS investigators would not see this as a
confounding problem because they believe that high rates of
psychiatric comorbidity indicate that CFS is mainly a psychiatric
disorder.
However, several studies have clearly differentiated CFS from
depression, the writers state, and they argue that "the erroneous
inclusion of people with primary psychiatric conditions in CFS
samples will have detrimental consequences for the interpretation of
both epidemiologic and treatment efficacy findings."
This paper also considers contradictions in recommendations for
treatment. Where one study reported that cognitive behavioral
intervention reduced depression with no resulting decrease in
fatigue, another study found that similar therapy combined with
increased activity led to reduced fatigue. The former study
recommended limiting activity to avoid a relapse, while the latter
suggested that rest contributed to prolonged illness. Jason and his
colleagues examined the patient populations selected for the two
studies and found that those in the latter study were much less
impaired to begin with, yet were maintaining lower activity levels.
Most also had a psychiatric diagnosis. In contrast, the relatively
high-functioning but severely ill patients in the former study may
already have achieved the benefits of activity.
The article also examines the definition of fatigue and chronic
fatigue, the historical context for illnesses assumed to be
psychiatric, the clinical distinctions between depression and CFS,
and the conflicting prevalence figures found in various
epidemiological studies.
In calling for CFS research to delineate "precise criteria for
diagnosing pure CFS," the authors write:
A significant complicating factor in understanding the dynamics
of this illness is that there are probably different types of
illnesses now contained with the CFS construct. ... Even the
construct of fatigue needs to be better differentiated into
various dimensions. ... Until more differentiated subgroups are
developed, it will be exceedingly difficult to identify
characteristics that are common for all people with the diagnosis
of CFS.
[Thanks to Ray Colliton for assistance with this report.]
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>>>2. U.S. Congress hears about CFS and name change
The U.S. Congress received mixed testimony from patient advocates on
January 28 about the government's response to CFS. Roger Burns, the
publisher of the CFS-NEWS Electronic Newsletter, testified about the
government's failure to move forward on changing the name of the
illness in a timely fashion, despite Congress's request that this be
done. Mr. Burns cited the stigma of the name and of the illness for
disrupting family life, and for obstructing the delivery of needed
medical care and disability benefits.
He criticized the government's CFS Coordinating Committee for not
examining all aspects of the issue when it decided to suspend active
work on choosing a new name, and he stated that CFS is too
politicized of an issue for that government committee to take
leadership on changing the name, since it is comprised of bureaucrats
and scientists who are too vulnerable to criticism from professional
colleagues. Burns called for the creation of a special committee or
a forum or workshop to pursue the name-change issue.
Later that day, Kim Kenney of the CFIDS Association of America
praised the government for its satellite teleconference of Sept. 18
which aimed at educating health care workers about CFS. However, Ms.
Kenney criticized the Centers for Disease Control for not being
completely forthcoming with a full accounting of its CFS funds. She
also cited a recent decrease in NIH funding for CFS despite an
overall increase of the NIH budget, and she requested an additional
$10 million be allocated for outside grants. Lastly, Ms. Kenney
reported that the Social Security Administration has apparently lost
interest in reforms that would enable CFS sufferers to obtain due
disability benefits. She asked for Congress's assistance with all of
these items.
The testimony by these two advocates was received with great interest
by Congressman John Porter (R-IL), the chairman of the Appropriations
Subcommittee on government health agencies. Mr. Porter has had a
substantial interest in CFS issues for many years, and he has often
been cited for his support of the CFS community. His powerful
position within the Congress's Appropriations Committee gives him
much influence over government health matters. Mr. Porter said that
he would definitely look into all of these matters that were brought
to his attention.
The full text of Mr. Burns' testimony is available at
http://www.cais.net/cfs-news/name-98.htm
Also see the editorial by Mr. Burns further below in this newsletter.
Ms. Kenney's testimony is available at
http://www.cfids.org/news/lhhs98.html
For a further background on this issue, see Change-the-Name web page
at
http://www.cais.net/cfs-news/name.htm
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>>>3. Brain test anomalies found by Harvard researcher
Prof. Frank Duffy reports that quantitative EEG tests on CFS patients
show very high amplitude alpha rhythm, and epilepsy-like discharges
in the temporal lobes. Duffy, a neurophysiologist at Harvard Medical
School, found different results when comparing 25 CFS patients to
healthy controls and subjects with depression. The work was reported
in an interview on an Australian radio network. Duffy did not mention
when the study would be published in a medical journal. The
transcript of the interview can be seen at
http://www.abc.net.au/rn/talks/8.30/helthrpt/hstories/hr151297.htm
Similar work was reported by Myra Preston, Ph.D., in the Winter 1996
edition of the CFIDS Chronicle.
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>>>4. Australian report on CFS
A committee of scientists has developed a draft set of clinical
guidelines for the treatment of CFS to be used by doctors in
Australia, similar to the 1996 British Royal Colleges report. The
initial draft report of the Australian committee can be seen at
http://www.mja.com.au/public/guides/cfs/cfs1.html
The committee requests that comments on the draft be sent in by
February 18.
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>>>5. Call for abstracts: AACFS conference in Boston, Oct. 1998
[The following text was provided by Dr. Paul Levine of the AACFS.]
Abstracts are now being accepted for presentation at the next
meeting of the American Association for Chronic Fatigue Syndrome,
which will be held at the Hyatt Regency Hotel in Cambridge,
Mass Oct. 12-14, 1998. The deadline is May 1. Abstracts should
be mailed to:
AACFS, Abstract Selection Committee
c/o Harborview Medical Center
325 Ninth Ave.
Box 359780,
Seattle, WA 98104
USA
Abstract forms and information are in the AACFS Newsletter and
can also be obtained by contacting nic...@u.washington.edu (Ms.
Debra Pralle). Please pass this information on to your colleagues
and other CFS-related WEB sites. Details will also be available
on the AACFS WEB site at
http://weber.u.washington.edu/~dedra/aacfs1.html
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>>>6. Osteopathic treatment found helpful, reports U.K. researchers
[The following news release was issued by the University of Salford,
U.K., about a paper just published in the Journal of Medical
Engineering and Technology. The editor of CFS-NEWS has not seen the
original paper.]
ME Treatment - A New Breakthrough
An important breakthrough into the treatment of ME has been made by
researchers at Salford University. A revolutionary osteopathic
technique, developed by well known practitioner Raymond Perrin,
has demonstrated up to a 40% improvement in the very severe symptoms.
And it could offer new hope to Britain's 150,000 sufferers of the
debilitating condition who include the Duchess of Kent, Yachtswoman
Clare Francis and Esther Rantzen's daughter.
A year long clinical trial carried out at Salford's Department of
Orthopaedics, has concluded that osteopathic treatment reduces the
major symptoms of the illness now known as Chronic
Fatigue Syndrome. Two groups took part in the tests. One group of
patients received no other treatment than osteopathy for the 12
months while a control group was allowed any therapy of their
choosing with the exception of osteopathy.
A 40% improvement in all symptoms - severe depression, chronic
fatigue, back pain, headaches and sleeplessness - in the patient
group was registered by the end of the year. Nine patients recorded
an improvement of over 50% while two felt completely symptom free. It
is also significant that only seven members of the patient group
improved by less than the 23% improvement scored by the best result
of the control group. The control group's mean result was 1% worse
after the 12 months with one sufferer worsening by 36%.
Details of the important breakthrough are published today [January
27, 1998] in the Journal of Medical Engineering and Technology. A
chance discovery in 1989 by Mr Perrin revealed a plausible
correlation between the spine and the incidence of ME with a cause of
the disease being an irritation of the nervous system and a build up
of toxins in the lymphatic system. He took his findings to Salford
University where they were taken up by eminent bioengineer Professor
Jack Edwards and clinical psychologist Dr Pat Hartley. Further
research is to be carried out to discover the exact processes
involved in the body that cause the disease.
[Thanks to Dr. Marsha Wallace for alerting CFS-NEWS to this report.]
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>>>7. Treatment of medically unexplained symptoms discussed in BMJ
An editorial titled "Treating medically unexplained physical
symptoms: Effective interventions are available" appeared in the
British Medical Journal on Saturday, 6 September 1997. It makes
specific reference to CFS and other conditions and it discusses the
value of cognitive behavioral therapy and the disadvantage of mind
vs. body dualistic view. The editorial was written by Richard Mayou
and Michael Sharpe. The full text of the editorial can be seen at
http://www.bmj.com/bmj/archive/7108/7108e5.htm
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>>>8. CFS medical conference in Sydney, Feb. 12 and 13
There will be an international CFS medical conference in Sydney,
Australia February 12 and 13. Speakers will include Peter Rowe,
Garth Nicolson, David Bell, Carl Gottfries, B. Regland, Hugh Dunstan,
Andrew Lloyd, Robert Loblay, Neil McGregor, Timothy Roberts, and
Denis Wakefield. For more information, see
http://www.networx.com.au/mall/cfs/meeting/
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>>>9. EDITORIAL: Change the Name -- Update
by Roger Burns, publisher of the CFS-NEWS Electronic Newsletter
I am heartened by the response of Chairman Porter to my request that
Congress should stand by its policy of demanding that the name of
this illness be changed as soon as possible. I will continue to work
closely with government officials on this issue to press for
continuous and deliberate progress. I'll report on the latest
progress at least once each month, here in this newsletter.
Since CFS patients have such limited energy, I think it will be best
to hold off on any lobbying or letter-writing campaign until we may
come across the next major obstacle. The name-change issue will be
coming to the attention of government officials in the coming months,
and we will be able to gauge our progress on this issue.
Please note, in my view the U.S. CFS Coordinating Committee was not
entirely wrong in its decision at its last meeting in October '97.
If the sole option available to them was to create a wholly new
physiologic-based name, then the decision they made would have been
correct -- there is in fact not enough scientific evidence at this
time to create a new name that describes what is the exact disease
process of CFS.
However, choosing an entirely new physiologic-based name was not the
only option available to that government committee. They could have
given more serious consideration to one of the alternative names that
has already appeared in the scientific literature (that is, one of
the variants of "M.E.") Or they could have given a more substantial
look at creating an eponym, that is, naming the illness after a
doctor or patient associated with the disease.
The real error of the government committee at its October meeting was
that it failed to look at WHY the patients are demanding a change of
name. The illegitimacy of this disease, its social stigma and its
lack of acceptance by most doctors, contribute very greatly to the
tragedy of CFS. I reminded the government CFS committee at its
previous meeting in May that the oldest code of medical ethics
declares "First, do no harm". And that this should apply to the
harmful name with which the patients have been saddled. This was not
taken to heart, or was forgotten, at the October meeting where the
decision was made to suspend the name-change effort.
It is probably too much to ask of this particular government
committee to take a bold stand on changing the name. Neither
bureaucrats nor private scientists whose careers depend upon the
acceptance and praise by their professional peers can afford to
become conspicuous in calling for striking changes in any aspect of
this controversial field. Government bureaucrats are not in a
position to promote revolutionary changes, or what might be viewed as
such. Private researchers who study CFS are already putting their
careers at risk by focusing on this disease. And bureaucrats and
researchers constitute the overwhelming majority of the government
CFS Coordinating Committee.
So I am calling on higher-level government officials to find other
ways to use their great influence to lead the change-of-name and to
diminish the stigma of CFS as soon as possible. Such a project
should be developed by soliciting the joint cooperation of scientists
and general practitioners of medicine, and patients who are pushing
for a change. It will be important to include all three groups in a
project to design and implement a plan to end the stigma and change
the name. At a minimum, scientists and clinicians and patients need
to strive to understand each other's point of view on this issue that
troubles us all.
Note: the text of my testimony before Congress can be seen at
http://www.cais.net/cfs-news/name-98.htm
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