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By Mike Reynolds

From Winter 2013-2014 Forum

There’s a group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy) that wants you and me to believe they’re working to make life better for PWC/MEs and other illnesses but they seem to have no clue about the history of CFIDS/ME. That became more than apparent when they had Anthony L. Komaroff, M.D. present a “physician’s course” at Birmingham’s St. Vincent Hospital in Alabama just a few months ago. Indeed, this group that brags online about how they donate small sums to Lyme, FM and other groups seems totally clueless that they asked an arch enemy to speak on CFIDS/ME and then were surprised when he suggested treatments that might be beneficial — CBT and GET — even though one is actually quite dangerous to patients and the other doesn’t help at all. But it is, of course what our CDC suggests and wants all physicians to believe.

Why, why, why didn’t they do their homework first? This Harvard doctor saw patients in the late 1980’s and, when he found tests that revealed lesions on their brains, he sent those patients to Harvard’s multiple sclerosis (MS) expert, the late Charles Poser, M.D. Dr. Poser sent the patients back to Komaroff telling him the lesions were in different areas than those found in MS and they did not have MS but the patients had ME! Soon after that happened, a government committee was formed by the CDC to change the name of Chronic Epstein-Barr Virus that was given, erroneously, to ME. Well, some on that committee had actually seen patients with what the NIH said was CEBV and some complained. They were told to either go along with the new and trivializing name of chronic fatigue syndrome or to leave the committee. Many left in disgust but not Anthony Komaroff. He not only joined the likes of Stephen E. Straus, the nasty one in charge at the NIH who made fun of patients, but he was proud to get his name on the first “1988 Holmes Definition for CFS” (Ann Intern Med. 108:387-389). When that definition, as loose as it was, seemed to allow too many physicians to diagnose “CFS”, he also helped author the 1994 Fukuda definition along with famed UK phychobabbler Michael Sharpe, M.D. What PANDORA could have found out is that “Tony” also became an advisor to the CDC’s CFS group and worked closely with Dr. William Reeves to gradually but devotedly to make CFS a mental disorder. Well, of course he would suggest, as treatments, CBT and GET as that’s what the CDC suggested first under Reeves and still suggests to this day! PANDORA only needed to check the CDC site on the internet for proof.

Komaroff, however, seemed to give a good presentation when he began to show how the illness “is real” by showing some of the science. He seemed to have missed, however, some of the most important work that would have demonstrated to every physician in attendance at St. Vincent’s that it not only is the illness real but that it is very serious and is a slow progression toward cancer. I guess he missed the work in the 1990’s, funded by the NCF, that replicated work by Kenny de Meirleir, M.D., Ph.D. proving that Stat-1, a part of everyone’s immune system, is slowly being decimated by this disease. Of course, even Kenny, himself, doesn’t say that aloud although he paid a lot of money to have his discovery patented and has now joined the WPI! Tony ignored all the work done by Yoshitsugi Hokama, Ph.D. that proved this was autoimmune and he could have saved lives in Alabama if he had mentioned that Dr. Hokama also found out how to avoid any cardiac damage with anesthesia. Even though he has worked for the CDC for decades, he also failed to mention that the silly sounding “fatigue” label has been proven to be cancer-related by the NIH’s own National Cancer Institute and published a year before he spoke!

Tony gave a professional looking talk but he cited his published papers on mere “reviews” instead of giving the actual discoverer’s name in most instances. Just one example of that was when he mentioned SPECT scans abnormalities yet never gave the scientist’s name who discovered this fact (Ishmael Mena, Ph.D.) credit when he cited papers via accompanied slides. Well, to be fair, he did cite some, such as Nancy Klimas, M.D. but she’s another who quietly remains on the CDC’s payroll. While, of course, he talked of the “abundant evidence” proving “CFS” was “real”, he also stated that no cause has been found and that many have looked at viruses: Q fever, Ross River Viruses, lyme, parvoviruses, enteroviruses and, as he said, “the cousin of EBV”, HHV6. He did admit all those were merely triggers. Although some of the world’s most famous radiation experts have mentioned “CFS” being a result of low-level radiation poisoning, he failed to mention that fact. Does anybody really believe he is unaware of all these newer proven facts?

Oh, if Wisconsin’s PANDORA had only looked at history when they were looking for someone to talk on this subject, it could have actually saved a patient’s life. They certainly wouldn’t have asked him to be the speaker although their website still links to “Ten Discoveries about the Biology of CFS” that contain the same material as a paper he wrote that the NCF has offered to their members for nearly two decades.

It was just recently that PANDORA finally demonstrated that it was not really a mistake when they asked Tony Komaroff to speak when they came out for the certain disaster in the making called the IOM’s (Institute of Medicine) contract to develop a new diagnostic criteria for “CFS/ME” as they joined the CAA as cheerleaders for that private group. Finally, others are seeing PANDORA, as well as seeing the CAA, for what they really are and facts show neither are working for the better of any PWC/ME.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606