The week of May 12 through May 16 marked a week of comprehensive CFIDS advocacy efforts in Washington, D.C. Along with staffers of the CFIDS Association of America, CFIDS patients from all over the USA, including Alaska, discussed CFIDS with senate and congressional representatives and their staff members, lobbying them to continue funding research into the illness.
Events began on May 12, national CFIDS Awareness Day, when about seventy-five people with CFIDS rallied on the lawn of the Capitol building to publicize CFIDS and announce their week-long presence in Washington. According to Frank Wrenn, Director of Communications and Development for the CFIDS Association of America, “This rally was organized by Mary Schweitzer of WECAN, which is an e-mail, internet support group for people with CFIDS. The event made an impact because people with CFIDS spoke about how the disease damages lives. Their speeches, combined with graphic banners and representations of what they’d lost due to the illness, provided eloquent testimony of how committed the CFIDS community is to triumphing over the illness- and finding a cure.’ Speakers such as Mary Schweitzer commented on various articles displayed at the site: for instance, a former nurse brought her cap to show how she’d been a high-achieving medical professional before CFIDS altered the course of her life. CFIDS Association of America staff member Viki Carpman also addressed the rally about the advances the CFIDS community has made, and must continue to make, to find a cure to the disease.
“This year, we had seventy patient advocates working in Washington,” says Wrenn. “This unprecedented turnout enabled us to reach hundreds of legislators and their key staff members with our message.’ On May 14th, the CFIDS association trained the patient advocates in how to present their two main “talking points” to the legislators and their aides. (These two “talking points” were the necessity of continuing government funding to the Centers For Disease Control (CDC) and the National Institute of Health (NIH) for CFIDS research.) Lobbying took place on May 15 throughout the day; the lobbyists also underlined the importance of strengthening CFIDS-related provisions in the NIH Revitalization Act of 1993.
“It was a pleasant surprise to learn that so many congressional and senate staffers understand what CFIDS is and what the issues are,” says Wrenn. “As recently as two years ago, we’d have to spend a great deal of time explaining the facts of CFIDS to government people. They’re far more receptive now and much better informed. So it appears we’re making substantial progress.” Wrenn even met with a congressional staffer who told him that he had been able to self-diagnose for CFIDS as a result of having been lobbied by the CFTDS Association over the years. ‘He found treatment promptly and he’s coping well under the circumstances,’ Wrenn says.
On Friday, May 16th, the CFIDS Association sponsored senate and congressional briefings, each of which lasted one hour These sessions were moderated by CFIDS Association Executive Director Kim Kenney and shared the same theme: the need to help persons with CFIDS from under-served populations. Government medical officials such as Dr. John LaMontaigne sat on the panel; he is the Director of the Division of Microbiology and Infectious Diseases at the National Institute of Allergy and Infectious Diseases. Dr. LaMontaigne was joined by leading CFIDS researchers such as Dr. Robert Suhadolnik of Temple University and Dr. Karen Jordan. Iris Ramer, an Hispanic American CFIDS patient, and Karen Lang, a CFIDS patient and mother of a child with CFIDS, also presented vital testimony and answered questions from legislative staff members. “These sessions were very well-attended,” Wrenn reports, “especially the senate briefing, indicating that legislators take CFIDS seriously”
Following the briefings, the CFIDS Association held an honorary luncheon for two highly-placed advocates for the CFIDS community: Philip R. Lee, M.D., who recently retired from his post as U.S. assistant secretary of health, and John Porter, an Illinois congressman who is chair of the subcommittee which deals with NIH and CDC funding. “The luncheon was made possible by an anonymous donation,” says Wrenn. “About sixty people attended and there was a big turnout of people with CFIDS and legislative staff members. This allowed for more informal lobbying and brought the week’s events to a gracious close.”