By Vicki C. Walker

May 12, 1999, was a day for the CFIDS history books. As CFIDS advocates around the country increased awareness of CFIDS with activities ranging from wearing blue ribbons to hosting special events in their communities, 67 of us were paying visits to 84 Congressional offices on Capitol Hill.
 
Our message decrying the federal government's inattention to CFIDS research was hammered home when, at noon, the Department of Health and Human Services (DHHS) Inspector General (IG) released its report finding that the Centers for Disease Control (CDC) had repeatedly diverted CFIDS research funds into other, unrelated programs, and then lied to Congress and the American public about it. The members of Congress and their aides with whom we met were outraged upon learning that, of $23.3 million reportedly spent by CDC on CFIDS research, only $9.8 million actually went to study CFIDS.
 
Despite a clear message from Congress, sent most vocally by Rep. John Porter, chairman of the committee which controls medical research spending, the CDC still has not offered a satisfactory restitution plan. CDC Director Jeffery Koplan plans to implement new accounting controls to prevent further abuse of the system, but he has not disciplined the CDC staff responsible, nor has he offered to restore funds to the CFS research program. Representative Porter told the Washington Post that he is talking with Dr. Koplan about steps to rectify the problem, saying, "We have not agreed and the matter remains open."
 
The Association has spent much of the intervening weeks following up on the release of the IG's report. A copy of the report was sent on May 17 to all the Congressmen we met with on Lobby Day. A press release and personal calls were made to hundreds of media outlets around the country, resulting in coverage by The Washington Post, "Good Morning America," FOX Network News, U.S. News and World Report and other media outlets (see page 5). A C-ACT alert* was mailed to nearly 2,000 CFIDS activists on May 19, resulting in hundreds of letters to Congress asking for compensation for the misspent funds. On June 16, CFIDS Association Chairman Marc Iverson wrote to DHHS Secretary Donna Shalala demanding that the funds be restored, the offenders punished and the CFS Coordinating Committee (CFSCC) permitted to make recommendations about an appropriate restitution plan.
 
The CFSCC will meet on July 26 from 1-5 pm in Washington to hear reports from the Inspector General and the CDC and to discuss restitution. While the meeting will be open to the public, there will be no comment period for the public. The CFSCC's next regularly scheduled meeting, which will include public testimony, will be Nov. 1-2.
 
On June 14, the General Accounting Office (GAO) finally responded affirmatively to Sen. Harry Reid's Sept. 28, 1998, letter asking for a study on the quality of CFIDS research and the impact of the diversion of funds. (The IG only audited CDC's books.) The GAO waited to review the IG's findings before deciding whether to pursue its own, expanded study. Sen. Reid's staff met with the GAO on June 22 to give them his and The CFIDS Association's wish list for the study.

Other advocacy news 
On May 10, CFIDS advocates Karen Lang, Joseph Lane and I met with staff from the Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR). The NIDRR staff brought with them a new grant announcement which included CFIDS as an example of research it would like to fund. This was a direct result of a letter sent by The CFIDS Association to NIDRR, asking the agency to consider funding CFIDS research. News of this new funding opportunity was sent to over 2,600 CFIDS researchers and clinicians in May, and we are hopeful that we can soon add the Department of Education to the list of federal agencies supporting CFIDS research. (We have created a new E-mail list to notify researchers of new funding opportunities. For more information, see the website www.onelist.com/subscribe.cgi/cfsgrant-info or contact me at vwalker@cfids.org.)

Committee nominations 
The CFIDS Association nominated two people to replace former CFSCC member Kristin Thorson, who resigned from the CFSCC in March. They are Jon Sterling, past president of the New Jersey CFS Association, and Jan Montgomery, co-founder of the San Francisco CFIDS Foundation. Secretary Shalala has not yet chosen a replacement for Mrs. Thorson. She also has not replaced Dr. Dedra Buchwald or Jerry Crum, whose terms expired last autumn, but they continue to serve on the committee in the interim.

Physician education

• The planning team for the physician education program co-sponsored by The CFIDS Association and the Illinois Area Health Education Program met in Charlotte May 21-22. The committee will next meet in Chicago in September and expects to complete work this year on a curriculum for training health care practitioners about the diagnosis and management of CFIDS.
  
• Progress is being made on a mailing to the 1,000 Community and Migrant Health Centers across America. Marilyn Gaston, MD, Assistant Surgeon General and Director of the Bureau of Primary Health Care in the Health Resources and Services Administration, will send a letter describing the seriousness and prevalence of CFIDS, along with literature from CDC, NIH and The CFIDS Association of America, to each of these Centers, which primarily serve low-income patients.
  
• The CFIDS Association has submitted a request for the Agency for Health Care Policy and Research (AHCPR) to issue evidence-based guidelines for the diagnosis and management of CFIDS. In addition to asking AHCPR to review current treatment methods, we are also requesting that they offer guidance on the quality of the treatment research and the confidence with which they can recommend a particular treatment, based on variables such as the number of people studied and the outcome measures used.

Disability issues 
The Work Incentives Improvement Act, which may allow disabled Social Security beneficiaries to keep their government health insurance after returning to work, passed the Senate on June 16. A vote on the legislation has not yet been scheduled in the House. This, coupled with SSA's increase in the maximum monthly earnings a disabled beneficiary can earn (from $500 to $700 per month), may help reduce two of the primary barriers that cause disabled people to avoid trying to return to work.

Vicki Walker is Public Policy Coordinator for The CFIDS Association of America. She is in her seventh year of service to the Association.