GAO study outlined
On October 1, Janet Heinrich of the GAO sent Senator Harry
Reid an outline
of its investigation of the CDC and National Institutes of Health (NIH) CFIDS research programs. The objectives
of the study are to determine: 1. What CFS research activities on CFS CDC and NIH support and whether
those activities are consistent with what would be expected; 2. What funds and resources (e.g., staff)
CDC and NIH devote to CFS research and the procedures and timing for allocating those funds; and 3. How
CDC and NIH collaborate and communicate with each other, patient organizations and non-governmental researchers
and to what extent those activities facilitate an overall coordinated effort. The study, which will review
records as far back as 1988 (when CFS was first mentioned in Congressional bills), is targeted for completion
by May 25.
Although the federal fiscal year ended on September
30, Congress has
not yet passed all of its annual appropriations bills. The Labor/Health and Human Services bill, which
contains CFIDS legislation, is among the stalled bills. However, preliminary language mandates restoration
of the full $12.9 million the IG found the CDC had misused to the agency's CFS research program. Congress
has asked that the restored funds be used to reinvigorate CFIDS research and education efforts.
CFIDS community received distressing news on October 12, when Representative John Porter announced that
he will not seek re-election next year. Rep. Porter, chairman of the Labor/HHS committee, has been a strong
advocate for biomedical research, and for CFIDS research in particular. His influential voice in Congress
on behalf of persons with CFIDS will be sadly missed.
C-ACT members* were asked in late September
to write to members of the Senate Health, Education, Labor and Pensions (HELP) Committee asking for a
hearing on the government's response to CFIDS. Staff for Senators Frist and Jeffords said that a full
legislative calendar and a move away from single disease hearings make it difficult to grant the hearing
request this fall. We continue to pursue alternate means of holding a Congressional hearing on CFIDS.
Moore, founder of the Association's youth program, submitted testimony on behalf of The CFIDS Association
to the Senate HELP Committee's hearing on children's health issues. She asked for increased federal attention
to and research on young people with CFIDS.
NIH workshop, grants set
NIH has postponed
its CFS State of the Science workshop scheduled for November 1. Dr. David Morens, the new NIH staff member
who coordinates CFIDS research, found that several prominent researchers would be unable to attend that
day when he began issuing invitations in September. As a result, NIH will move the workshop to January
or February to accommodate the scientists.
NIH announced October 20 that it will fund three CFS
Cooperative Research Centers. Dr. Dedra Buchwald of the University of Washington, Dr. Benjamin Natelson
of the University of Medicine and Dentistry of New Jersey and Dr. Nancy Klimas of the University of Miami
will receive $1.9 million in the first year of the four-year grants.
SSA education continues
Seminars are scheduled to help attorneys and Social
(SSA) staff understand the recent Social Security ruling on CFIDS (the ruling is posted on the web at
www. cfids.org/advocacy/ssr99-2p.htm). On November 4, the National Organization of Social Security Claimants
Representatives (NOSSCR) will hear from attorney Peter McKee about the new ruling. Dr. Marsha Wallace
and CFIDS Association Executive Director Kim Kenney will give a presentation on CFIDS to SSA's Professional
Relations staff on December 16.
In addition, The CFIDS Association has commented on a proposed
SSA ruling dealing with age as a factor in disability claims. The proposed ruling does not explicitly
state that people under 50 can qualify for disability benefits. This was an important component of the
CFS ruling and one the Association felt should be expanded to include all disabled people.
HRSA, AHEC help promote CFIDS
The CFIDS Association was awarded a grant from
the Health Resources
and Services Administration (HRSA) and the Illinois Area Health Education Center this year to display
information about CFIDS at medical meetings. The Association plans to host booths at the American Medical
Women's Association meeting November 10-14, the American College of Physicians/American Society of Internal
Medicine meeting April 13-16 and the American Academy of Physician Assistants meeting May 27-June 1. We
hope to display at additional meetings as funds permit.
CFSCC nominees named, solicited
Three new members will participate in the
Department of Health
and Human Services (DHHS) Chronic Fatigue Syndrome Coordinating Committee (CFSCC) meeting on November
Jan Montgomery will serve as Disability/Health Care Services Expert, the position previously
held by Jerry Crum. Ms. Montgomery is a person with CFIDS and co-founder of the San Francisco CFIDS Foundation,
where she worked closely with many public health officials, including former U.S. Assistant Secretary
for Health Dr. Philip Lee. She also established a CFIDS clinic at the University of California at San
Dr. Peter Rowe will hold the position of Biomedical Researcher previously held by Dr.
Dedra Buchwald. Dr. Rowe is director of the Diagnostic Referral Center at Johns Hopkins University Hospital.
He is a member of the research team that first published evidence of neurally mediated hypotension (NMH),
an autonomic nervous system abnormality, in CFIDS patients. He is currently working on an NIH-funded grant
to measure prevalence of NMH and the efficacy of treatment for it in the overall CFIDS population.
Jonathan Sterling will hold the position of Representative of a Voluntary
CFS Organization formerly held by Ms. Kristin Thorson. He is a PWC and immediate past president of the
New Jersey CFS Association. Under his leadership, NJCFSA passed a bill in the New Jersey state assembly
to make $95,000 available to establish a CFS physician education program for New
These three advocates were nominated by The CFIDS Association of America. Early next year,
the terms of Dr. Nancy Klimas (Biomedical Researcher) and attorney Aba Heiman (Health Care Services/Disability/Insurance
Expert) will expire and the CFSCC has already solicited nominations for their replacements.
Name change workgroup delayed
The CFSCC's proposal (approved at its April
meeting) to form
a workgroup by August on changing the name "chronic fatigue syndrome" has not yet been implemented. Concerned
about the delay on this important project, Kim Kenney asked Dr. Lurie for a status report. Dr. Lurie replied
that DHHS has been attempting to identify a chairperson for the workgroup. She also said that DHHS will
propose an alternate structure for the workgroup at the November 2 meeting.
Vicki Walker is Research and Public Policy Project Manager for The CFIDS Association