AACFS Medical Conference

The following is a summary of a few of the over 90 presentations given at the biannual AACFS scientific conference held on October 10-12 in Cambridge, Massachusetts. Many thanks to Prof. Anthony Komaroff whose comments on these presentations were very helpful.

Dr. Robert Suhadolnik presented much more extensive work on his possible biological marker for CFS. The damaged protein is showing up significantly more often within a subset of CFS patients than in healthy controls. Very similar findings have now been shown by two other studies. Prof. Komaroff commented that this is not yet proven as a diagnostic marker for CFS, and there needs to be more studies, and in particular studies that make comparisons to patients who have other illnesses.

Regarding epidemiology, Prof. Komaroff commented that recent CFS prevalence studies seem to be converging on a consistent range of 1 to 4 adults per thousand, a markedly higher range than older studies had shown. Two major studies are currently being conducted, by the CDC and by Leonard Jason's Chicago group. In Komaroff's summary he mentioned that CFS seems to be less prevalent in youths than in adults, perhaps one quarter as common in children and one half as common in teenagers.

A study by Dr. Nancy Klimas shows low-level immune activation in CFS, and in particular that the level of activation of cytotoxic T-cells seems to correlate well with patients' reports of how severe their illness feels. Dr. Wilhemina Behan presented a study showing that CFS may share a common mechanism with an ion channel disorder, and she suggested that CFS patients may be leaking potassium from their cells, corresponding to a noted energy loss. Two separate studies (by Konstance Knox et al. and Dharam Ablashi et al.) found HHV-6 activation present in CFS patients more so than in healthy controls. Several studies seemed to confirm the results of the Johns Hopkins research relating CFS and neurally mediated hypotension.

A study by D. Fairhurst of the University of Leeds showed slowed mental processing by CFS patients when compared to matched controls. H. Moldofsky presented a study showing altered circadian sleep/wake neuroendocrine and immune functions in CFS patients when compared to two kinds of healthy control groups. Lorna Paul discussed a controlled study of how gait appears altered in CFS patients.

Borna virus was the subject of two reports. B. Evengard of Sweden described a controlled study of CFS patients which showed no evidence in blood of Borna virus infection. A similar study by S. Levine of New York showed mixed results indicating a possible connection to Borna virus. Prof. Komaroff commented that this area of research is very speculative, but that a connection between CFS and Borna virus is not impossible.

Dr. J.A. Bellanti conducted a randomized placebo-controlled study of NADH treatment. His results seemed to show a correlation with some improved health. Dr. Greta Moorkens found mixed results in the use of growth hormone as a treatment, which had previously been studied in fibromyalgia. Moorkens' CFS study seemed inconclusive with standard measures showing no significant improvement, yet some patients were able to return to work and one reported a recovery. Prof. Komaroff commented that these studies need further research.

Ampligen trials were reported by Dr. David Strayer, the Medical Director of Hemispherx Biopharma, Inc., the drug's manufacturer. Strayer reported improvements for a large number of patients, especially those that tested positive for the RNase L marker being developed by Robert Suhadolnik. The report on Ampligen trials was not among those that were commented on in Prof. Komaroff's summary of the conference.

In a separate session later in the conference there was a presentation by several patients who are enrolled in current trials of Ampligen. They reported health improvements with the drug, with no long-term side effects. The session was enlivened by the presence of Manuel Asensio, the Wall Street stock trader who is in a pitched financial and legal battle with the drug's manufacturer over the merit of its main product, Ampligen. Asensio claims that the drug is ineffective and unsafe. He did make clear that he is openly short-selling the manufacturer's stock sand that he will profit from a downturn of the company. In contrast, Dr. Daniel Peterson stated at the session that his 12 years of experience with 70 patients in Ampligen trials shows the drug to be safe and effective, but that good responses are seen only in selected patients and it is very important to select the right patients.

The AACFS Governor Perpich Award was given to Dr. Philip R. Lee, who recently served as the U.S. Assistant Secretary for Health. In Dr. Lee's acceptance speech he recounted the steady accumulation of evidence that legitimizes CFS. Lee further said that the time is overdue to change the name of the illness from the current "chronic fatigue syndrome".

This article is from the CFS-NEWS (ISSN 1066-8152), an international newsletter published and edited by Roger Burns in Washington D.C.

Copyright (c) 1998 by Roger Burns. Permission is granted to excerpt this document if the source (CFS-NEWS Electronic Newsletter) is cited. This notice does not diminish the rights of others whose copyrighted material as so noted may be quoted herein. All trademarks, both marked and not marked, are the property of their respective owners.

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