Journal of IiME Volume 5 Issue 1 (May 2011) Letter from America The CFS Patient Advocate continued the struggle to understand this illness and what might work as treatments. Their good work has continued. This includes the practice of Dr. Dan Peterson, who recently made a presentation in Calgary. Dr. Peterson continues to work with some success with the drug Ampligen, as do Dr. Charles Lapp and Dr. Lucinda Bateman. Hemispherx sponsored an important conference on Ampligen in ME/CFS, detailing new studies and attempts to increase efficacy of the drug. Dr. Paul Cheney continues to work on his own treatment protocol, sharing treatment and research ideas with other clinician/researchers, including Dr. Kenny de Meirleir - and also the WPI. Dr. Cheney is doing experimental work with GcMAF and also with Stem Cells. Dr. Joseph Brewer has been working with HIV, ME/CFS and Lyme patients for many years and is interested in new treatment protocols, examining in particular biological associations between CFS and HIV patients, looking for commonalities. Dr. Brewer, too, is interacting with others. Dr. Patricia Salvato has also worked extensively with ME/CFS patients and HIV patients. She, too, is examining a broad treatment protocol based on emerging ideas combined with her vast clinical experience. There certainly are those in the ME/CFS field, including myself, who believe ME/CFS is best characterized or described as "non-HIV AIDS". Dr. Derek Enlander who also has his eyes and ears open to new treatment protocols, is perhaps starting his own Ampligen trial. Dr. Enlander worked closely with Dr. Kerr, until Dr. Kerr was stripped of his academic job and was forced to end his very promising ME/CFS research. Dr. John Chia continues to work with enteroviral involvement in ME/CFS, building his research - with possible new treatments coming in the next couple of years. Several researcher/clinicians have opened their own ME/CFS clinical/research operations. The first is Dr. Jose Montoya at Stanford who runs the Stanford CFS clinic. Dr. Montoya is working on a large study ferreting out the relationship of a host Invest in ME (Charity Nr. 1114035) of pathogens associated with ME/CFS. He is working with Ian Lipkin on this study. Another is Dr. Andreas Kogelnik of Mountain View CA. Dr. Kogelnik will be speaking at the 2011 Invest in ME conference. The third is Nancy Klimas in Miami FL who combines a clinical practice with a research effort that she shares with Mary Ann Fletcher and Broderick Gordon. No systematic framework is in place for these clinician/researchers to work together. No one, except for the WPI, even seems to think about this. For instance the WPI, Dr. Klimas and Dr. Montoya are all working on a cytokine array to identify patients with this illness. No one seems to have an interest in or even an awareness of, what the other is doing. As my daughter characterizes it, ME/CFS is the Wild West of illnesses. Sparked by this Invest in ME conference, more researchers and clinicians are talking to each other - and exchanging research and treatment possibilities. The positive that can be taken away is that there are many very smart and dedicated people working on this illness - additional candidates to get involved emerged at the NIH State of Knowledge conference, particularly Dr. Michael Dean, and Dr. Theoharis C. Theoharides. We do not want to forget the contributions made by Rich van Konynenburg and his ideas about methylation blockage/glutathione depletion, Dr. Kenny de Meirlier's work with GcMAF, Marian Lemle's hypothesis of H2S involvement in ME/CFS, and Jill Belch‟s important research at the University of Dundee and the important work being done with Rituxamab in Norway - to mention a few. I apologize to those whom I might have left out. The biggest problem in ME/CFS is the public and "behind the scenes" working of what I would call the "dark force". These are the many people with "black haloes" who want to submerge these ME/CFS patients for the next 25 years - as they have done for the last 25 years. Who are these Continued page 21 www.investinme.org Page 20/58
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