#56: Call for conference abstracts / New book "Osler's Web" (fwd)
CFS-NEWS Electronic Newsletter
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 56 March 27, 1996 Washington DC
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OCTOBER CFS CONFERENCE: CALL FOR ABSTRACTS /
NEW BOOK: "OSLER'S WEB"
CONTENTS
>>>1. October CFS conference: Call for abstracts
>>>2. New book "Osler's Web" chronicles and condemns slow response
to the challenge of CFS
>>>3. Outcome and prognosis of chronic fatigue vs. CFS
>>>4. Immunologic research
>>>5. Assessing somatization disorder in CFS
>>>6. Cognitive function and mood
>>>7. NMH research discussed in letters in JAMA
>>>8. Research reviews
>>>9. Treatment reviews
[The author of "Osler's Web", Hillary Johnson, will appear this
evening on ABC Television's Prime Time Live, and tomorow morning on
that network's Good Morning America program. See details in article
number 2 below. -- Editor]
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>>>1. October CFS conference: Call for abstracts
The American Association for Chronic Fatigue Syndrome (AACFS) will
hold a major medical conference on CFS research and clinical issues
during October 13-16, 1996 in San Francisco. AACFS has issued a call
for abstracts from those who wish to make a presentation (either
clinical or basic science) at the conference. All abstracts will be
peer reviewed and the authors should be informed of the results of
the review by July 1. To obtain the abstract application materials,
send a request to AACFS by any of the following means (and be sure to
include your postal address):
E-mail: LBA...@aol.com
Voicemail/Fax: 1-800-232-8710 (USA)
1-518-435-1765 (non-USA)
Postal mail: AACFS
Box 249
900 Central Avenue
Albany, NY 12206
Abstracts should be received by AACFS by April 19. Those arriving
later will have a lower priority than those received before this
deadline.
General information about AACFS can be obtained by visiting its web
page at:
http://weber.u.washington.edu/~dedra/aacfs1.html
[Thanks to Leslie Boyer and Doctors Paul Levine and Michael McGoodwin
of AACFS for assistance with the information in this article.]
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>>>2. New book "Osler's Web" chronicles and condemns slow response
to the challenge of CFS
A new book by journalist/patient Hillary Johnson chronicles the
actions of public health officials and scientists in dealing with
CFS, and finds great fault with the slowness of meeting this
challenge. This epic account is now available for purchase, and an
audio version will soon be accessible on the Internet. Author
Hillary Johnson will be appearing on many television and radio shows
to discuss the book (beginning this evening, Wednesday, March 27 --
see below), and she will be touring many cities in North America in
the weeks to come.
About the book
Johnson's weighty 736-page book is titled "Osler's Web: Inside the
Labyrinth of the Chronic Fatigue Syndrome Epidemic". Its tone and
format have been compared by many reviewers to "And the Band Played
On", the narrative by the late journalist Randy Shilts which
chronicled the checkered response of public health officials to the
AIDS crisis.
Johnson has written what appears to be a comprehensive history of how
government officials and scientists in the USA have dealt CFS in the
late 1980s through the early 1990s. Among its many claims, the
author makes the case that CFS is an organic and contagious illness,
and yet despite evidence supporting this *and* specific directives
from Congress, government scientists tacitly but firmly put this
challenge aside, effectively refusing for many years to research this
illness. Johnson argues that promising research such as that by Paul
Cheney and Elaine DeFreitas has been set aside and opposed by medical
officials.
"Osler's Web" also documents the seriousness and severity of CFS, and
how the current name "chronic fatigue syndrome" blocks progress
towards legitimizing this illness among medical professionals and the
public. The book in named after Sir William Osler MD who promoted
the notion that good medical science follows from gathering evidence
by directly observing patients.
Hillary Johnson is a professional journalist who has been published
in many periodicals including Life, Vanity Fair, The Wall Street
Journal, and Rolling Stone magazine. She fell ill with CFS in 1986.
Further information about the book from the publisher, including an
interview with the author, was distributed yesterday through the CFS
Newswire service. To obtain a copy of that material, send the
command GET CFSOSLER TXT as an e-mail message to the address
LIST...@SJUVM.STJOHNS.EDU.
Media coverage / author on tour
Hillary Johnson will be discussing her book on ABC television's Prime
Time Live program this evening, Wednesday, March 27 (broadcast at 10
PM, 9 PM Central). She will also be appearing on ABC's Good Morning
America program tomorrow morning, Thursday March 28. Johnson will be
traveling on a book tour in North America and her current itinerary
is as follows:
New York City Thu. March 28
Washington DC Mon. April 1
San Francisco Wed. April 3
Los Angeles Thu. April 4
Minneapolis Mon, Tue April 8, 9
Toronto Fri. April 12
Boston Thu. April 18
How to obtain the book
The list price for "Osler's Web" is $30. Phone orders can be placed
directly with Crown Publishing Group by calling 1-800-793-2665. It
can also be purchased from the CFIDS Association of America at
telephone 1-704-365-2343. Taylor Communications will be making the
book available as an audio file in early April, for a fee the same as
the price of the book ($30). For information about this service,
phone 1-800-558-6432.
[Thanks to Crown Publishing Group and Taylor Communications for the
information provided in this report. To get on the mailing list for
the CFS Newswire service, send a command in the form of SUB CFS-WIRE
YourFirstName YourLastName as an e-mail message to
LIST...@SJUVM.STJOHNS.EDU .]
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>>>3. Outcome and prognosis of chronic fatigue vs. CFS
A large study of chronic fatigue and CFS patients conducted at the
University of Washington School of Medicine (Seattle) provides much
data about illness outcome, and medical, psychiatric and demographic
characteristics. The study shows that CFS patients are generally
more ill than those with merely chronic fatigue, and that the only
factor found have a correlation to outcome for CFS subjects was
dysthymia (mood disorder). Poor outcomes for non-CFS chronic fatigue
subjects, however, were correlated with age, length of illness, as
well as dysthymia.
The study involved 445 subjects with chronic fatigue, among which 51
percent met the CDC definition of CFS. The authors caution that
their subjects were drawn "from a specialized referral clinic and had
a relatively long pre-existing duration of illness. Therefore, the
sample is likely to be biased toward individuals with more severe or
refractory illness." With this caveat in mind then, note the
following reported results. For the combined sample in this study,
64 percent showed improvement over time, but only 2 percent showed
complete remission of fatigue-related symptoms. Fibromyalgia was
found in 30 percent of CFS subjects, and in 14 percent of non-CFS
subjects. The CFS patients were 84 percent female, vs. 65 percent
for non-CFS. When all subjects were asked about treatments that
appeared to be beneficial for their illness, common responses
included: antidepressant medication, rest, hydrotherapy, vitamins and
minerals, and stress reduction.
The journal citation for this paper is:
Bombardier C, Buchwald D. Outcome and Prognosis of Patients With
Chronic Fatigue vs Chronic Fatigue Syndrome. Arch Intern Med
Oct 23, 1995 155:2105-2110.
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>>>4. Immunologic research
A Dutch research team has examined immunologic abnormalities in CFS
patients and have found differences from healthy controls in some
cases, but not significant and specific enough in any case for these
differences to be used as a diagnostic marker or as an indicator of
severity of illness. The study compared 76 CFS patients with 69
matched controls and found decreased IL-1b and TNF-a production, and
decreased expression of CD11b on CD8 cells. However, no significant
differences were found for expression of CD38 and HLA-DR, and in a
smaller subset of subjects and controls no apoptosis was found.
These several findings confirm some previous research and contradict
others. This study was published as:
Swanink C, Vercoulen J, Galama J, Roos M, Meyaard L, Ven-
Jongekrijg J, Nijs R, Bleijenberg G, Fennis J, Miedema F, Meer J.
Lymphocyte Subsets, Apoptosis, and Cytokines in Patients with
Chronic Fatigue Syndrome. Journal of Infectious Diseases
1996;173:460-3.
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>>>5. Assessing somatization disorder in CFS
A New Jersey research team has attempted to assess the prevalence of
somatization disorder (SD) in CFS. Among their many conclusions are:
results of SD assessment are dramatically affected by whether the
examiner judges the observed CFS symptoms as having a physical or
psychiatric origin; results are very different if different SD
criteria are used, and in particular, CFS patients usually do not
match the strict definition of SD which requires a lifetime history
indicating SD; SD is generally difficult to assess in a controversial
illness such as CFS; if CFS is considered an organic disease, then
CFS patients cannot have SD; nonetheless, some CFS patients may be
somatizing to some degree. The authors compare their results to
other similar research, and discuss the similarities (inconsistent
findings) and differences (lifetime history vs. later onset) between
SD and CFS. They state that it is unhelpful to maintain the
traditional physical/psychiatric dichotomy in viewing these
conditions, and they call for future CFS research to examine
heterogeneous subgroups to better explore these issues. The authors
recommend that "treatment for patients with controversial illness
involving many medically unexplained symptoms should be conservative
because 'overinvestigation' consumes health care resources without
benefiting the patient." They also suggest that the CDC criteria for
CFS be expanded to include other symptoms commonly observed.
The report's analysis was helped by formally comparing 42 CFS
patients to 18 subjects with multiple sclerosis, 21 who had
depression, and 32 healthy controls. See:
Johnson S, DeLuca J, Natelson B. Assessing Somatization Disorder
in Chronic Fatigue Syndrome. Psychosomatic Medicine 1996;58:50-57.
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>>>6. Cognitive function and mood
A Minnesota study found that CFS patients differed markedly from
depressed subjects by showing normal levels of negative affect (a
mood indicator). They also differed by showing normal results for
sustained attention to verbal vs. figural stimuli. The CFS patients
differed from healthy subjects by showing slower cognitive processing
and motor speed, and lower positive affect. The study compared data
on 27 CFS patients to data on healthy subjects and depressed subjects
from other studies. The authors cite several limitations in their
study and recommend further investigations. See:
Marshall P, Watson D, Steinberg P, Cornblatt B, Peterson P,
Callies A, Schenck C. An Assessment of Cognitive Function and Mood
in Chronic Fatigue Syndrome. Biol Psychiatry 1996;39:199-206
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>>>7. NMH research discussed in letters in JAMA
A discussion of last September's research from Johns Hopkins
University linking CFS to neurally mediated hypotension (NMH) has
appeared in the letters column of the Journal of the American Medical
Association (JAMA). Trevor Beard expressed concern that it is unwise
to generally recommend higher salt intake, but Hopkins' Dr. Rowe
responded that it is called for among those who have NMH. Riccardo
Baschetti suggested that certain adrenal insufficiency treatments
should be considered. such as combining hydrocortisone with
fludrocortisone, or using licorice. Rowe welcomed the suggestion,
and pointed out the cautions about all of the medications. David
Klonoff expressed several concerns about the study, and concludes
that a link between NMH and CFS has not been established. Rowe
addressed the several points, and reaffirmed that this is a
preliminary study, and that his team is developing a randomized
trial. These letters appeared in JAMA, February 7, 1996
275(5):359-360.
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>>>8. Research reviews
Plioplys and Plioplys have written a brief, broad and clear summary
of CFS research in an eight-page article. The article discusses
viral, immunologic, psychiatric, and neurologic hypotheses. The
paper contains 81 references. The article also mentions some of
their own work, in which they find contradicting results about
psychiatric diagnosis rates as reported by Manu et al., and about
muscle mitochondria abnormalities as reported by Behan et al., but
they do confirm low serum L-carnitine levels as reported by
Kuratsune, et al. They report positive results in using L-carnitine
as a treatment. See: Plioplys S, Plioplys A. Chronic Fatigue
Syndrome (Myalgic Encephalopathy). Southern Medical Journal, October
1995 88(10):993-1000.
Farrar, Locke and Kantrowitz have written a more comprehensive review
of CFS research. Their 12-page paper contains sections on clinical
features, case definition (the paper was written before the 1994
revision of the CDC definition), epidemiology, historical
perspective, etiologic theories, persistent viral infection, primary
muscle disorder, chronic immune dysfunction, neuroendocrine disorder,
primary sleep disorder, neuropsychiatric disorder (with sub-sections
on primary depression, somatization, and stress), and social
perspectives. The paper cites 133 references. It is accompanied by a
second article which reviews treatments (described in the next item).
See: Farrar D, Locke S, Kantrowitz F. Chronic Fatigue Syndrome 1:
Etiology and Pathogenesis. Behavioral Medicine, Spring 1995 21:5-16.
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>>>9. Treatment reviews
Kantrowitz, Farrar and Locke review available treatments. It
contains sections on patient education, rest and lifestyle
adjustments, sleep restoration, exercise / physical therapy / and
massage therapy, medications, psychiatric management, psychological
treatment, alternative or complementary therapies, and future
research. There are 32 references. See Kantrowitz F, Farrar D,
Locke S. Chronic Fatigue Syndrome 2: Treatment and Future Research.
Behavioral Medicine, Spring 1995 21:17-24.
Hickie, Lloyd and Wakefield discuss assessment and management of CFS,
including the definition, clinical evaluation and laboratory tests,
psychiatric co-morbidity, etiological hypotheses, predicting outcome,
and treatment studies in patients with CFS (medical and psychological
interventions). There are 48 references. See: Hickie I, Lloyd A,
Wakefield D. Chronic fatigue syndrome: current perspectives on
evaluation and management. Medical Journal of Australia, 18 September
1995 163:314-318.
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