By Vicki C. Walker

Congress passes health bills
At the end of 1999, Congress issued its annual instructions to the federal health and human services agencies, including directives on how to address the needs of CFIDS patients. A summary of all of the CFIDS-related language in the fiscal year 2000 appropriations bill is on the Association's web site. Following are some of the key points of interest to CFIDS advocates:

• The House and Senate both censured the Centers for Disease Control and Prevention (CDC) for diverting $12.9 million in CFIDS research funds into other research programs and mandated that the agency restore 100% of the misspent funds and reinvigorate its CFS research program.
• The Department of Health and Human Services (DHHS) was told to "take a leadership role in informing health care professionals and the general public about CFS, focusing on the prevalent and serious nature" of the illness.
• The National Institutes of Health (NIH) was put on notice that Congress expects that the overall funding increases given to NIH should be used, in part, to find "better treatments and a cure" for CFIDS.
• The 1999 CFS ruling by the Social Security Administration (SSA) was praised, but the House noted the "the long history of difficulty" CFIDS patients have had applying for disability benefits and told SSA to "undertake an aggressive training program" to make sure the ruling would be "understood and implemented."

CDC investigations continue
Senator Harry Reid, who in September 1998 first asked the General Accounting Office (GAO) to investigate the ramifications of the CDC's lack of support for CFIDS research (as demonstrated by their diversion of CFIDS research funds), has now asked Attorney General Janet Reno to conduct a criminal investigation. Outraged over the fact that CDC management lied to Congress about the amount of CFIDS research it conducted from 1995-98, and fortified with a copy of the "Lying to Congress Act" provided to him by The CFIDS Association, on November 8 Senator Reid sent Ms. Reno a letter asking the Department of Justice to investigate whether criminal conduct occurred.

On November 9 The CFIDS Association asked its C-ACT members to contact their Senators to ask for additional support for Senator Reid's call for a Justice investigation. Although a number of Senators, notably John Kyl of Arizona and Rick Santorum of Pennsylvania, have expressed their support for the investigation, Ms. Reno has not yet responded.

As reported in the past several issues of the Chronicle, the General Accounting Office (GAO) study of CDC and NIH is underway. The GAO investigator has paid several visits to both CDC and NIH over the last six months. Throughout January the lead investigator, Carolyn Feis, interviewed current and former members of the CFS Coordinating Committee, including CFIDS Association president/CEO Kim Kenney. The investigators were told of our serious and long-held concerns about the usefulness, effectiveness and responsiveness of NIH, CDC and the CFS Coordinating Committee (CFSCC). Documents supporting our claims were given to the GAO investigators.

For late-breaking news on the CDC investigations, see article this issue.

CFSCC meets
The Department of Health and Human Services' CFS Coordinating Committee (CFSCC) met on November 2, 1999. Among the reports at the meeting was one from Dr. Stephen Straus, who has been NIH's lead in-house CFIDS researcher and was appointed director of NIH's National Center for Complementary and Alternative Medicine (NCCAM) late last year.

Dr. Straus indicated that his interest in CFIDS had abated and, in light of his new responsibilities at NCCAM, he would have little involvement in conducting CFIDS research. He also reviewed the status of the CFIDS intramural program at NIH and welcomed the involvement of the NIH Office of the Director and its representative, Dr. Donna Dean, who is working to develop cross-NIH interest in CFIDS research.

Dr. David Morens of NIH reported on two upcoming projects: a "State of the Science" consultation on February 6-7 (see story in this issue for details) and a collaboration with the Agency for Health Care Policy and Research (AHCPR) to do an analysis of existing CFIDS knowledge. The focus of the AHCPR "evidence-based" study has not yet been determined, but members of the CFSCC were invited to make recommendations. Dr. Douglas Kamerow of AHCPR told the CFSCC that it would draw from many sources when evaluating the available information about CFIDS, including unpublished and foreign-language data.

CDC's Dr. Joe McDade gave a presentation on the October 13 meeting with CFIDS patient advocates, which was covered in the Nov/Dec 99 issue of the Chronicle. The report on that meeting has been posted on CDC's website.  He also stated that CDC would be hosting an independent "peer-review" of its CFS research program on November 15-16, and that the recommendations made by participants at both of these meetings would help shape CDC's "reinvigorated" CFIDS research plan, which would be presented to the CFSCC on February 8.

DHHS also offered its response to the name-change workgroup plan endorsed by the CFSCC in April 1999. Dr. Art Lawrence reported that the agency accepted most of the original plan, but said that the workgroup was legally prohibited from making decisions---it could only collect information and report it to the CFSCC, which could only make decisions in its public meetings.

The workgroup will be composed of CFIDS researchers, clinicians and patients---so far Dr. Lawrence, Kim Kenney and Dr. Nancy Klimas have been named to the workgroup. Overall, Dr. Lawrence stated, DHHS agrees that a name change needs to be pursued, but believes any new name must be supported by science. See story in this issue for a report on the February 8 CFSCC meeting, including the CDC's plans for reinvigorating its CFIDS research program.

In October, a call for nominations was issued for new CFSCC members to replace Dr. Nancy Klimas and attorney Aba Heiman, whose terms are expiring. For the position of biomedical researcher, The CFIDS Association re-nominated Dr. Klimas and also recommended Dr. Leonard Jason. For the position of health care or disability services expert, The CFIDS Association nominated Dr. David Bell and attorney Mitchell Lambros. The new committee members have not yet been chosen.

Social Security news
Disabled Americans should have an easier time returning to work under a new federal law. The "Ticket to Work" program will let people with disabilities who get a job keep their federal health insurance and, if their disability forces them to quit their jobs, get back on Social Security disability benefits more easily. The law also states that work activity can't be used as evidence to show that a person is not disabled. The Chronicle will continue to follow and report on this new law as it is implemented.

Social Security Administration (SSA) personnel received yet another opportunity to learn about the April 1999 SSA ruling on CFS (SSR 99-2p). Dr. Marsha Wallace and CFIDS Association president/CEO Kim Kenney presented information about CFS and the ruling to SSA's Professional Relations staff on December 16. The training session was videotaped and will be used in SSA's continuing education efforts.

Vicki Walker is Research and Public Policy Project Manager for The CFIDS Association of America.

Lobby Day planning underway
May 12th will mark the eighth annual International CFIDS/ME Awareness Day.

The CFIDS Association will be holding its annual Lobby Day this year--help bring our message to Capitol Hill. CFIDS is serious, complex and prevalent and its devastating impact on over 800,000 American lives warrants increased attention from federal health and human services agencies. For information write us at: The CFIDS Association of America, Attn: Lobby Day, PO Box 220398, Charlotte NC 28222-0398, call us at: 704/365-2343, or send an e-mail to: c-act@cfids.org.

Even if you can’t join us in person, we need your help sending our message to Congress through your letters, faxes and phone calls. A sample letter, mailing list and other information will be provided to C-ACT members and other advocates who request it. To obtain your copy, write us at: The CFIDS Association of America, Attn: May 12, PO Box 220398, Charlotte NC 28222-0398, call us at: 704/365-2343, or send an e-mail to: c-act@cfids.org. The information is also available on the Association’s website at www.cfids.org/advocacy/default.asp.