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) 
Concern 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 newspaper.
 
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 CFSCC meetings.
 
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) 
As 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 research.
 
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 CFS.

Centers for Disease Control and Prevention (CDC)
If 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 priorities.
 
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 (HRSA) 
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 Committee (CFSCC) 
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 1997.
 
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 meeting.
 
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.

Insurance Reform 
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 benefits.
 
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.

Lobby Day 
Don't forget to circle May 11-12 on your calendar for CFIDS Lobby Day in Washington.

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 public.

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 in April.

We’ve been busy! Here’s what we’ve done so far this year.

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 (NIAID).
Feb. 11: Met with Center for Scientific Review.
Feb. 11: Met with National Institute of Mental Health.
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 and Stroke.

Chronic Fatigue Syndrome Coordinating Committee:
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:
Feb. 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 Services:
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.
Feb. 25: Surgeon General David Satcher held closed federal agency briefing on CFS.

Misuse of CFS funds at CDC:
Feb. 2: Met with staff from offices of Senator Harry Reid (Nev.) and Representative John Porter (Ill.) to update them on CDC investigation progress.
Feb. 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 are accurate.
Feb. 11: Met with staff from Rep. John Porter’s office.
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:
Jan. 25: Met with Health Resources and Services Administration (HRSA) regarding primary care provider education project.
Feb. 3: 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.

Insurance reform:
Jan. 20: 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.

Upcoming events
March: Inspector 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 policy.
April 9-10: Health Resources and Services Administration meeting of CFS health care provider training program advisory committee.
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.
May 12: International CFIDS/ME Awareness Day and Washington D.C. Lobby Day (see the article in this issue for more information).
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 exhibit.
September: Name-change forum at CFS conference in Brussels, Belgium; goal is to build an international consensus on renaming CFS.