AACFS Conference 1998: Researchers report progress on many fronts, but puzzles remain unsolved, Putting it all in perspective

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Eight years ago I attended my first CFIDS conference. Held in November of 1990 in Charlotte, the “buzz” of that meeting was Dr. Elaine DeFreitas’ announcement of a novel retrovirus similar to HTLV-II that had been found more often in CFIDS patients than healthy control subjects.

After returning from the AACFS conference in Boston earlier this week, I looked back at the program for the 1990 conference. To my surprise, there were many similarities. On both schedules I found talks about the following subjects: prevalence of the illness, the role of HHV-6 (a common herpesvirus), the 2’5’A synthetase pathway (an intricate anti-viral mechanism of the body’s immune system), immunological markers, treatment with Ampligen, cognitive behavioral therapy, neuropsychological deficits, and sleep abnormalities. Even some of the presenters’ names were the same: Charles Lapp, Paul Cheney, David Bell, Dan Peterson, Nancy Klimas, Robert Suhadolnik, Jan Montgomery, Jay Levy, Andrew Lloyd, Ian Hickie, and Harvey Moldofsky.

But there were differences as well. Aside from obvious differences of length and format (the Boston conference lasted a day longer and included separate research, clinical and patient presentations and a research poster session), the 1998 meeting reflected a much more multi-systemic view of CFIDS and a much broader international research effort. The 90 research papers presented came from investigators in 27 countries. While some of the research topics persisted for eight years, many were new. Here are just a few:

· Potassium deficiencies in the heart muscle (Behan, Scotland);
· Reduced stroke volume and cardiac output (Peckerman, New Jersey);
· Lung function abnormalities (De Becker, Belgium);
·Orthostatic intolerance and heart rate variability abnormalities among teens with CFIDS (Stewart, New York);
· Slowed information processing (Fairhurst, England);
· Treatment with growth hormone (Moorkens, Belgium);
· A trial of expanded lymph node cells as immunomodulatory therapy (Klimas, Florida); and
· Auto-antibody responses to lamin B1 (Tan, California).

Much of the research presented in 1990 was funded by patient organizations, while disclosures for the 1998 conference showed expanded funding sources from government agencies, pharmaceutical companies, and biotechnology firms.

The big research “buzz” in Boston was perhaps the most dramatic sign of progress in both research and advocacy efforts over the last eight years. During the conference’s first session, Michelle Reyes, PhD of the Centers for Disease Control and Prevention (CDC) presented data from the CDC’s latest study of how many people have CFS. Dr. Reyes announced their findings that nearly 2 of every 1,000 persons has CFS, and 3-4 of every 1,000 women have the illness. This is 50 times the rate the CDC reported from a study first described at the 1990 Charlotte conference by CDC’s Dr. Walter Gunn (now retired). CDC’s perception then of CFS as a relatively uncommon, self-limited illness had evolved into an understanding of CFS as a “serious public health concern” that occurs at 25 times the rate of AIDS among women. Improved study design, due in part from the Association’s persistent efforts to hold the CDC accountable for weaknesses in earlier studies, resulted in better estimates of the magnitude of CFIDS.

The meeting of the Department of Health and Human Services CFS Coordinating Committee (CFSCC) held in Boston the day after the conference (Oct. 13) also showed how far we’ve come since 1990. In Charlotte, two presentations about public policy efforts were made by Jan Montgomery and Joan Sutherland. They spoke about the barriers to developing health policy for CFIDS, building relationships with government agencies, and empowering PWCs by giving them a voice in policy decisions that affect them. They also talked about the need to change the name “chronic fatigue syndrome.” But that was the extent of formal communication about policy issues.

In contrast, the CFSCC meeting in Boston brought together officials from the major health agencies of the federal government and seven appointed CFS researchers and patient advocates. In a lively and productive discussion led by the Principal Deputy Assistant Secretary for Health, Dr. Nicole Lurie, committee members openly exchanged views about how to address the allegations about CDC’s misuse of CFS funds (see pages 28–30 for more information), how to measure progress in the response to challenges posed by CFIDS, ways of recruiting new investigators to the study of CFIDS, and, yes, even steps to tackle the name change. A public witness testimony segment provided eight PWCs with an opportunity to share their concerns with the committee, charged with advising the Secretary for Health about CFS policy. A meeting like this one was what Jan and Joan likely envisioned as they prepared their remarks for the 1990 conference.

One constant in both these conferences and the ones held in interceding years was the dogged determination and courage displayed by the PWCs attending the conference. In spite of the enormous physical and economic toll of CFIDS, they attended in large numbers to learn, to question and to teach. For another constant has been that too few health-care providers know how to diagnose and treat CFIDS, so those with the illness have to seek out this information themselves. Their presence at these meetings is also a sobering reminder of the human dimension of this disease—one that’s easy to lose sight of as statistics, scans, gels and electronmicrographs take center stage.

The 450 patients, health-care providers and advocates who gathered in Boston witnessed plenty of reasons to hope that by the time the AACFS convenes its next conference in 2000, there will be even more progress in research, public policy and education to report—and to celebrate.

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