May - June 1999
Monitoring disability research
New Jersey CFS Association
(NJCFSA) has been closely monitoring the disability study under way in East Orange, N.J., by Dr. Benjamin
Natelson's research group. The study, under contract with the Social Security Administration, is intended
to help develop disability determination guidelines for CFIDS. However, the NJCFSA is concerned that the
study, as presently constructed, could lead to a narrowing of the definition of CFIDS in terms of disability
After the research center was awarded the contract in October 1998, Dr. Lana Tiersky,
who is supervising the study, sought to involve the NJCFSA in recruiting patients. The association asked
to review the details of the study and raised a number of concerns. In particular, the NJCFSA feels that
the study design fails to consider all the factors that could lead to disability in CFIDS. Following several
more meetings that failed to resolve the concerns, preparations were begun for a teleconference involving
Dr. Tiersky, Social Security disability officials in Washington, Kim Kenney of The CFIDS Association of
America, and representatives of NJCFSA.
The NJCFSA and Kim Kenney have raised the following specific
objections to using this study to derive definitive disability markers for CFIDS:
The study sample is too small: 50 patients and 50 controls.
The study is based on neurocognitive measures of disability only,
not pain, flu-like symptoms, orthostatic intolerance or symptom aggregation that constitute or compound
It involves a single site with a geographically limited patient
It is being done by a single investigator with no means of assessing
Patients must be well enough to travel to the center for evaluation
(and must be able to pay for their travel), skewing study results toward more ambulatory and/or more financially
Patients will be evaluated at one point in time only; due to variability
of symptoms and the remitting/relapsing pattern of the illness, it will be difficult to generalize patient's
performance to even their own ability to function over time, let alone generalizing more broadly to the
patient population as a whole.
There is no provision to follow up with patients after the evaluation
to assess the impact on cognitive or physical function the next day after effort is made to travel to
the center, participate in the evaluation and return home.
The interview instrument selected (DIS) will overestimate the presence
of depression among patients.
Investigators may, even inadvertently, give guidance to patients
that leads them to push beyond their everyday limits.
The advocates also are asking that
written acknowledgment of the
study's limitations be issued with the publication of the study and with any subsequent promulgation of
study results within the disability or scientific communities.
to Jon Sterling, president of NJCFSA, for helping
to compile this report.
British CFS/ME Working Group update
Chief Medical Officer’s
Working Group on CFS/ME met for the first time in March and agreed first that their work, expected to
take about 18 months, should be as open as possible. To that end, the group will issue a briefing after
each meeting. The group is diverse, and committed itself to including the widest possible range of views.
Its goal is to produce a "clear, concise, practical and easy to comprehend document -- giving guidance
for diagnosis and management, which will be usable by patients, carers, professionals and health service
Among the issues the group may address are the problems patients experience in
getting a diagnosis, the role of complementary therapies in treatment, the appropriateness of cognitive
behavioral therapy, training and availability of physicians willing to treat the illness, and disability
benefits. (The first briefing is available on the British Department of Health website at www.doh.gov.uk/cfs-me.htm.)
Pediatrics article causes
A new article
about CFS in adolescents has been greeted with concern by many CFS researchers, clinicians and patients.
"Report on a workshop on the epidemiology, natural history, and pathogenesis of chronic fatigue syndrome
in adolescents" by Dr. Gary Marshall, published in the April 1999 issue of Journal of Pediatrics,
reviews the April 1998 "state of the art" workshop on CFS in adolescents sponsored jointly by the CFS
Coordinating Committee, the Centers for Disease Control and the National Institutes of Health.
greatest concern, Dr. Marshall disputes most of the organic CFS research findings presented at the meeting
(including the extensive research on tilt table testing in adolescents with CFS), but he does not seem
to approach the psychological theories with such rigor.
We have asked many of the eminent scientists
studying CFS in children and adolescents to write letters to the editor of the Journal of Pediatrics.
If you would be interested in receiving a copy of this disappointing article, please send a legal-sized
SASE with 55˘ postage to The CFIDS Association with a request for "Marshall Paper."
New Jersey establishes CFS program
Jersey CFIDS advocates
are celebrating victory in their quest to gain approval and funding for a state program to educate physicians
Gov. Cristie Whitman signed Assembly Bill #507 into law on April 16 after it passed
unanimously in both the Assembly and Senate. The bill allocates $95,000 for the program, in which the
state Department of Health will conduct CFIDS awareness programs and medical education programs. The department
also, in consultation with the New Jersey CFS Association (NJCFSA) and others, will create a manual for
physicians on diagnosing, treating and managing the care of CFIDS patients. Based on recent prevalence
studies, an estimated 17,000 New Jersey residents have CFIDS.
Congratulations to NJCFSA President
Jon Sterling and his fellow advocates for their extraordinary efforts and their success!
Post-polio advocacy yields SSA action
Administration has agreed to clarify and strengthen its instructions to claims adjudicators on the late
effects of polio. Dr. Richard Bruno, director of The Post-Polio Institute at Englewood Hospital in New
Jersey, helped organize a letter-writing campaign to bring about the changes. He said the goal was to
make sure that SSA judges take into account all of the potentially disabling features of post-polio. Although
administrative law judges have generally ruled in favor of polio survivors, Dr. Bruno said, the education
that would accompany a Social Security Ruling should educate local adjudicators and prompt them to more
frequently make informed disability determinations earlier in the process. Presently, Dr. Bruno is gathering
information from post-polio patients who were denied Social Security Disability Insurance benefits, in
an effort to assist SSA in reviewing the situation.
CFIDS poet published in JAMA
Skloot, an author and
poet who writes about living with a brain disease and often specifically about CFIDS, has a poem published
in the "Poetry and Medicine" section of the April 14, 1999, issue of the Journal of the American Medical
Association. The poem is titled, "September in Seaview." Skloot also has two poems in the May 1999
issue of the prestigious Poetry magazine. Both of Skloot’s poems, like most of those in Poetry’s
May issue, are about illness. Skloot’s popular book, The Nightside: CFS and the Illness Experience,
is an honest and ultimately hopeful exploration of what it means to have one’s life shattered by disease.
CFIDS and MCS advocate dies
Leroy of suburban Chicago,
an organizer of a large support group for multiple chemical sensitivity patients in northern Illinois,
died in April. During the 16 years he was sick, he used his writing skills to advocate for both MCS and
CFIDS patients and wrote occasionally for the Chronicle. He was also regarded as a compassionate
counselor. Jim took his own life, explaining that his health had deteriorated to the point where he felt
he could no longer "engage the world in any meaningful way."