CFIDS News

Monitoring disability research
The 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 determinations.

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 functional impairment.
• It involves a single site with a geographically limited patient draw.
• It is being done by a single investigator with no means of assessing inter-investigator reliability.
• 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 stable patients.
• 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.

Thank you to Jon Sterling, president of NJCFSA, for helping to compile this report.

British CFS/ME Working Group update
The 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 commissioners."

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 concern
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.

Of 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."
 --Rebecca C. Moore

New Jersey establishes CFS program
New Jersey CFIDS advocates are celebrating victory in their quest to gain approval and funding for a state program to educate physicians about CFIDS.

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
The Social Security 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
Floyd 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
Jim 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."