The U.S. CFS Coordinating Committee presented a “State of the
Science” (SOS) conference on Oct. 23-24, 2001. Attendance was over 200.
Frank Albrecht is a psychologist who writes a newsletter on CFS
“SOS” is the international distress code and CFS research is certainly in distress, so these letters make sense for the occasion. And to some extent the call has been answered.
The CFS-SOS conference was organized in a distinctive way, one I’d never seen before but which worked effectively. Each segment started with a presentation by a researcher who had studied and published on CFS. Then there were presentations from other researchers in the same subject matter area (endocrinology, immunology, etc.), who had not studied and published on CFS. What these researchers had done, however, was read the CFS literature relevant to their specialty. So although they were “newbies” to CFS, they were able to make reasonably informed comments.
For instance, on the topic of fatigue we first heard from Dedra
Buchwald, M.D., Director of the Seattle CFS Research Center. Dr. Buchwald is also chair of the upcoming American Association for Chronic Fatigue Syndrome medical conference in January. She was followed by Lauren Krupp, M.D., who talked about fatigue in multiple sclerosis and Seven Passik, Ph.D., who talked about fatigue in cancer patients.
When the topic was sleeping problems, the first presenter was Harvey Moldofsky, MD, who has done extensive research on the “fragmented” and “non-restorative” sleep in CFS. He was followed by Roseanne Armitage, Ph.D., who has studied the effects of anti depressants on sleep, and James Krueger, Ph.D., who told us more than I was able to absorb about hormonal problems related to sleep.
This pattern was followed throughout. Other topics considered were neuroendocrinology, cognition, chronic pain, immunology, orthostatic intolerance/neurally mediated hypotension, and functional status/disability. The overall effect was to produce many new perspectives for CFS experts to consider, and to recruit a variety of respected medical experts to an enlightened interest in CFS.
One goal of the conference was to increase well-informed interest in
CFS among expert researchers. That goal certainly was accomplished.
Another goal was for CFS experts to gain a greater understanding of the pathophysiology of the illness. I can’t speak for the experts. But as an unusually well-informed non-expert, I unfortunately cannot say that I now understand CFS better than I did.
But I can say that I now have an improved appreciation of why the subject is so difficult. CFS involves complex interactions of the endocrine, neurohormonal, immune, and central nervous systems. The basic science of these kinds of interactions is incomplete, murky, and rapidly changing. So the illnesses that arise from them (including Fibromyalgia, Irritable Bowel Syndrome, Multiple Chemical Sensitivity, and perhaps also Gulf War Syndrome, as well as CFS), are not going to be well understood until the basic science underlying them is more advanced.
This may sound discouraging, but I do not see it that way. These are hot research areas that are being clarified pretty quickly. In addition, effective treatments do not have to wait upon full scientific enlightenment. Vaccination against smallpox, after all, was discovered 300 years before the viral understanding of the illness was developed. Current research is already suggesting new ways of looking at treatment and this tendency will certainly intensify.
I noticed, however, only one practical suggestion in the presentations. This was in regard for medications for sleep. Dr. Armitage suggested, based on her sleep studies, that low dose trazadone (Desyrel) or nefazodone (Serzone) tend to produce better quality of sleep for women than SSRIs such as Prozac and Paxil. Between the two, nefazodone produced a more normal sleep pattern.
Men, on the other hand, benefit from trazadone but are more likely to
do better with SSRIs than women.
I didn’t think the conference was perfect. There were presenters I would have preferred to some of those chosen. A few of the outside experts seemed not to have done their CFS assignments, and few if any seemed aware that there is a problem about the name. I very much disagreed with some things said by speakers or discussants. So I could advance many criticisms.
Overall, though, this was a serious, informative, and useful event. It certainly will stimulate productive research, and also will increase the visibility and credibility of CFS within a variety of medical and research communities. For this, and for the smooth functioning of the conference, I extend my thanks and congratulations to the organizer, Donna Dean of the National Institutes of Health.
© 2000 Frank Albrecht.