By Vicki C. Walker
As you will be able to see
from the list on the following pages, the Association's CFIDS advocacy program
is off to a vigorous start this year. Following are brief reports on the many
activities of the first two months of 1999.
Social Security Administration (SSA)
over the Dec. 23rd Wall Street Journal editorial thrashing out at SSA's
ruling on CFS and the lack of an official SSA response to the Journal
led CFIDS Association Executive Director Kim Kenney and The Sheridan Group to
meet with SSA Associate Commissioner Ken Nibali on Feb. 1. He assured Kim that
he would personally look into the Wall Street Journal situation in an
effort to identify the SSA "leak" who spoke to the
Although work on the ruling began over a year ago, it
has not yet been published and, therefore, is not official SSA policy. Nibali
said that he would push SSA staff to complete the remaining levels of review and
get it published by mid-April. In addition, he committed to initiate training of
SSA personnel shortly after the publication of the ruling and to involve The
CFIDS Association of America in the preparation of the training materials.
Soon after the Feb. 1st meeting, Bill Anderson, Director of the
Division of Medical and Vocational Policy at SSA, called Kim to tell her he
would be taking a more active role in CFS policy and would participate at the
On a more positive note, a New Jersey
Administrative Law Judge recently decided that a CFS claimant met the SSA
listing for multiple sclerosis (MS). SSA policy allows an adjudicator to grant
disability benefits based on "medical equivalence," meaning that the symptoms of
one illness fit the description of another "listed" impairment. The judge
decided that the claimant's (and her doctors') reports of neurological
dysfunction, muscle weakness and extreme fatigue were similar enough to the
symptoms of MS that they were, effectively, "equivalent" to MS. For a copy of
the ruling, send a SASE with 55¢ postage to the Association with a request for
the "NJ Ruling."
National Institutes of Health (NIH)
mentioned in the Jan./Feb. '99 Chronicle, we are continuing to meet
with various NIH institutes in an active effort to expand the number of
researchers studying CFIDS. These meetings have confirmed our suspicions that
the National Institute of Allergy and Infectious Diseases (NIAID)-the lead CFS
institute-is not effectively generating cross-institute interest in CFS
In a Feb. 17 meeting with the Office of Research on
Women's Health (ORWH), Director Vivian Pinn told us she hadn't heard anything
about NIH's CFS program since she was briefed by NIAID Director Anthony Fauci in
1994, so she assumed the research effort was on track. The ORWH hadn't been
participating in the NIH's CFS Coordinating Committee because Dr. Pinn was
unaware of the Committee's existence, which is overseen by NIAID. Upon learning
of its existence, she immediately assigned Dr. Marietta Anthony to represent the
ORWH on the NIH committee.
This is but one example of a common
refrain we heard from many different institutes. It appears that our recent
meetings have shed light onto this difficult problem and some solutions have
been proposed, including an NIH workshop on the "state of the science" in
Centers for Disease Control and Prevention (CDC)
rumors are true, the Inspector General's (IG) investigation of the reported
misspending of CFS research funds at CDC may be out by the time you read this.
As soon as it is published, we'll move into high gear visiting members of
Congress and garnering support for Senator Harry Reid's request for a General
Accounting Office (GAO) investigation that goes beyond the dollars spent and
evaluates how the federal CFS research effort is conducted. In a meeting on Feb.
12, GAO staff said that their agenda is very full and interest from members of
Congress might elevate the CFS investigation of CDC on their
C-ACT (CFIDS Activist) members will be notified once
the IG report is published, and likely will be asked to write letters to their
members of Congress asking for support of Senator Reid's GAO request. Earlier
correspondence from the IG indicated that the report would be available on the
Internet after it is released.
If you are not a C-ACT member and
would like to be notified once the report is out, please send your name and
address or, preferably, your E-mail address to the Association with a request
for "IG Report." (To join C-ACT, send your name and mailing address to the
Association with a request to join C-ACT.)
On Feb. 11, CDC
Director Jeffery Koplan testified before Representative John Porter's House
Labor, Health and Human Services, Education and Related Agencies (Labor/HHS)
Appropriations Subcommittee about CDC's recent activities and Fiscal Year 2000
needs. Of only three questions asked by Rep. Porter, one was about the reported
misspending of CFS funds at CDC. Dr. Koplan responded that CDC had taken
measures to ensure that this situation never happens again, which is seemingly
an admission from the CDC director that Dr. William Reeves' allegations are true
and CDC has inflated its past CFS spending to Congress.
Health Resources and Services Administration
Physician education is a primary topic for the Department of
Health and Human Services' CFS Coordinating Committee (CFSCC) meeting on April
21-22 in Washington. Kim Kenney has been working with HRSA staff to line up a
stimulating panel of experts. So far representatives from the American Medical
Association, American Association of Family Practitioners and the American
Association of Medical Colleges have agreed to speak to the CFSCC about
opportunities for educating physicians about CFIDS.
Progress on the
Association's health care provider education project with HRSA is being made. On
April 9-10, the project's advisory committee will meet in Charlotte. Members of
the committee are Sheryl Autrey, RN (Dr. Paul Cheney's former head nurse), Dr.
David Bell, Dr. Katrina Berne, Kim Kenney, Dr. Nancy Klimas and staff from the
Illinois Area Health Education Center.
Department of Health and Human Services CFS Coordinating
Although their terms have technically expired,
CFSCC members Gerald Crum and Dr. Dedra Buchwald are expected to participate in
the Committee's April 21-22 meeting. Nominations for new members to the CFSCC
were due in January but the process for evaluating potential members is lengthy.
Dr. Art Lawrence of DHHS informed us that two persons with CFIDS will be on the
nominee review panel, as was the case when the committee was first formed in
The CFIDS Association of America nominated four people for
the two openings on the CFSCC. Research scientist nominees are Leonard Jason,
PhD, and Peter Rowe, MD; health-care expert nominees are Mitchell Lambros, JD,
and Jan Montgomery.
At the October CFSCC meeting, three work groups
were formed to address renaming CFS, determining a proper ICD-10 diagnostic code
for CFS and evaluating the government's response to CFS. All of these work
groups are moving forward and will make progress reports at the April
On Feb. 19, The Sheridan Group and I met with Principal
Deputy Assistant Secretary for Health Dr. Nicole Lurie, who will chair the CFSCC
on behalf of Surgeon General Dr. David Satcher. We brought our concerns about
various agencies' CFS programs to her attention in advance of the Surgeon
General's Briefing on CFS on Feb. 25. Since the briefing is closed to the
public, we had hoped that Dr. Lurie would present our questions and concerns to
the agencies on our behalf.
We also impressed upon Dr. Lurie the
need for the federal government to join the growing movement to rename CFS. The
poor response from government representatives on the CFSCC indicates that they
are not taking this issue seriously, even though most patients, doctors and
advocates agree that the name needs to be changed, and support from the medical
establishment and government will contribute to the effectiveness of any change.
Dr. Lurie said she would try to find an unbiased expert to look at the situation
and determine the logistics and timing of changing the name.
The Employee Retirement
Income Security Act (ERISA) was passed in 1974 to "protect" employees' access to
benefits provided by their employers. The law is full of loopholes which allow
insurance companies to unfairly delay or deny benefits to claimants. This is
especially true with long-term disability and health insurance
With the assistance of volunteers, The CFIDS Association
of America submitted testimony to two federal committees looking carefully at
these problems. On Jan. 20, the Senate Health, Labor, Education and Pensions
(HELP) Committee held a hearing on the ERISA claims procedures. Although we
didn't have enough advance notice to appear at the hearing, we were permitted to
submit written testimony afterward. On Feb. 17-19, the Department of Labor held
public hearings on its proposal to rewrite the claims procedures in a manner
that closes many of those loopholes. I testified before that body on Feb. 18 in
support of the Department's proposal.
forget to circle May 11-12 on your calendar for CFIDS Lobby Day in
If you can't come to Lobby Day, we still need your help!
Letters from constituents about CFIDS are an essential component of our
grassroots advocacy campaign. Not only do they pave the way for Lobby Day
participants to meet with more members of Congress, but they also demonstrate
the widespread support for increased CFIDS research among the American
See the article in this issue for
more information about Lobby Day 1999 and details about how to write to your
members of Congress.
Vicki Walker, Public Policy and Youth Outreach
Coordinator, marks her sixth anniversary with The CFIDS Association of America
We’ve been busy! Here’s what we’ve done so far this
Efforts to increase the amount of research funded by the
National Institutes of Health:
Jan. 21: Conference call
with National Heart, Lung and Blood Institute.
Feb. 2: Met
with National Institute of Allergy and Infectious Diseases
Feb. 11: Met with Center for Scientific
Feb. 11: Met with National Institute of Mental
Feb. 17: Met with Office of Women’s Health; NIAID;
National Institute of Arthritis, Musculoskeletal and Skin Diseases; National
Center for Research Resources; and National Institute of Neurological Diseases
Chronic Fatigue Syndrome Coordinating
Jan. 21: The CFIDS Association of America
nominated Leonard Jason, PhD, Mitchell Lambros, JD, Jan Montgomery and Peter
Rowe, MD for two openings on the CFSCC.
Social Security Administration:
1: Met with Associate Commissioner for Disability Ken Nibali about Dec.
23 Wall Street Journal editorial highly critical of SSA’s CFS ruling.
Department of Health and Human
Feb. 11: Met with Dr. Art Lawrence, Deputy
Assistant Secretary for Health.
Feb. 19: Met with Principal
Deputy Assistant Secretary of Health Dr. Nicole Lurie.
25: Surgeon General David Satcher held closed federal agency briefing
Misuse of CFS funds at CDC:
Met with staff from offices of Senator Harry Reid (Nev.) and Representative John
Porter (Ill.) to update them on CDC investigation progress.
11: CDC Director Jeffery Koplan testified before House Labor/HHS
subcommittee; tells subcommittee chair John Porter (Ill.) that measures have
been taken to ensure that the misuse of CFS funds "doesn’t happen again,"
seemingly an admission by CDC that the allegations made by Dr. William Reeves
Feb. 11: Met with staff from Rep. John
Feb. 12: Met with General Accounting Office
staff; although no start-date has been set, an investigation seems likely based
on significant Congressional interest.
Feb. 17: Met with
staff of newly elected members of Congress Michael Capuano (Mass.), Rush Holt
(N.J.), Robin Hayes (N.C.), and Judy Biggert, (Ill.) to inform them about CFIDS
and the Inspector General’s investigation.
Health-care provider education:
25: Met with Health Resources and Services Administration (HRSA)
regarding primary care provider education project.
Conference call with HRSA and American Association of Medical Colleges regarding
the April 21st Chronic Fatigue Syndrome Coordinating Committee (CFSCC) meeting
focusing on provider education.
Feb. 5: Conference call with
HRSA regarding distribution of information about CFIDS to over 1,000 community
and migrant health centers and related field offices.
Testimony submitted to Senate Health, Education, Labor and Pensions Committee
supporting Department of Labor’s proposed changes to ERISA which will result in
a more consumer-friendly law.
Feb. 18: Testimony presented
at Department of Labor Hearing on proposed changes to ERISA.
General’s report expected to be released supporting allegations of misspending
of CFS funds at CDC.
April: Social Security Ruling on CFS
expected to be published in Federal Register, becoming official SSA
April 9-10: Health Resources and Services
Administration meeting of CFS health care provider training program advisory
April 21-22: Chronic Fatigue Syndrome
Coordinating Committee meets in Washington; topics on the agenda include
physician education, measuring the effectiveness of the government’s response to
CFS, renaming CFS, and diagnostic codes for CFS.
International CFIDS/ME Awareness Day and Washington D.C. Lobby Day (see the
article in this issue for more
July & August: Social Security
Administration Professional Relations and Medical Policy Forum Staff conferences
will include presentations on CFS.
August: The National Area
Health Education Centers meeting in Louisville will feature a CFS
September: Name-change forum at CFS conference in
Brussels, Belgium; goal is to build an international consensus on renaming