Journal of IiME Volume 5 Issue 1 (May 2011) Letter from America The CFS Patient Advocate and their effort to find a cause for ME/CFS. The publication in October 2009 of an association of the retrovirus XMRV with ME/CFS ignited a broad and increased interest in this illness. The publication of this fine study stirred great interest, one that went way beyond the particulars of XMRV. The paper was a real jolt - and with ongoing repercussions. In the past year, Amy Marcus of the Wall Street Journal and David Tuller of the NY Times each have written a series of articles on ME/CFS and on the scientific struggles that surround the association of a retrovirus (or virus) with this illness. In doing this both of them have painted a broader picture of the devastation of this illness. These articles have had nationwide coverage in the United States, and have brought ME/CFS to a higher consciousness for many people. These articles and this coverage of ME/CFS can also be directly attributed to the efforts of the Whittemore Peterson Institute. The October paper has fueled a discussion on the cause or potential cause of CFS/ME that has never been seen before at this level. Lombardi and Mikovits raised the stakes. Meanwhile the battle over XMRV continues. In the larger picture, XMRV is a detail. The battle really is about another issue - and it is a furious fight to the death. The issue centers on whether ME/CFS is either directly virally induced or an immunological problem that is virally induced. For 25 years there have been great efforts to sink any association of ME/CFS with viruses, (or bacteria, for that matter). Very few people have been looking for such a cause, but very many people have made great efforts to squash any viral cause association. One would have to wonder why? What is the real issue here? It is difficult to comprehend. Do these people just have an individual stake or are there larger forces at work? Why is there so much hostility towards this disease and the patients who suffer Invest in ME (Charity Nr. 1114035) from it? Why is there so little research into the illness and into potential treatments, some of which are currently available? The recent NIH State of Knowledge conference did very little to advance anything meaningful. A number of government and academic scientists did meet in the same room and exchange ideas - which is always a good idea. However, the NIH meeting itself came to no conclusions, no attempt was made to put the pieces together, no plan was made for future research to address gaps in our knowledge (as promised in the introduction to the meeting) and most importantly, no funding for research was proposed. All of this has to be seen as "by design" - or incompetence. More can be read about this on my blog, cfspatientadvocate.blogspot.com, with particular attention to the longer report that was actually not written by me. One recent positive sign involving the government was the presentation of Dr. A. Martin Lerner at the October 2010 CFSAC Science Day meeting. Dr. Martin Lerner was invited to make a presentation on his treatment data involving antivirals in selected ME/CFS patients. I believe this was the first time that the government sponsored a talk on a potential treatment for a subset of ME/CFS patients. However, neither the HHS nor the CDC has recommended Dr. Lerner's treatment for any patients, continuing their position that there is no known cause for this illness and no known treatments. While it is clear that the surge in articulating the seriousness of this illness can be attributed to the WPI, Judy Mikovits, Vincent Lombardi, Annette Whittemore and others, this is not to say that important research and treatment are not ongoing in other areas of the United States. Various long-term ME/CFS clinicians have www.investinme.org Continued page 20 Page 19/58
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