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PRESIDENT'S MESSAGE By Gail Kansky Winter 2015-2016 Hopefully, you’ve already read Mike Reynold’s front page article in this issue that had the title, “Why do They Insist on Hiding the Truth?” If you have, you’re probably asking why our own government (along with the former CAA, now SCI) continue to pretend that “’post-exertional malaise’ is the hallmark of the disease.” The answer is fairly obvious. Our government does not want to admit the fatigue of CFIDS/ME is cancer-related fatigue even though that was proven years ago by researchers at our own National Institute of Health’s National Cancer Institute*. For that matter, they don’t want to admit the immune dysfunction of CFIDS has been proven over and over again since the 1980’s! But every year, there are reports that come out in leading psychological medical journals that insist CFS/CFIDS/ ME is merely a psychological problem. In fact, the first one famous for doing that in the UK was Simon Wesseley and he received some huge funding from our own government just as he did for doing the same thing for Gulf War Illness. That is why we, unlike the other “national” group along with the psychologists around the world, rely upon and fund actual science that can be and has been fully replicated. When science is replicated, it actually becomes scientific fact. As I’ve said, so many times in the past, it may look like the air turns black every night but we all know that is not true but is actually what happens when day turns into night with the rotation of our planet. The air never turns black. So why do articles in medical journals keep appearing that “point to” CFIDS/ME being of psychological origin? For the same reason that no country has ever admitted that low-dose radiation is the cause of any illness. No country wants to be culpable. The prestigious medical journal Science had an article published on August 27, 2015 that reported on their results after an international group of more than 300 scientists tried to replicate the findings of psychological problems causing illnesses. They actually worked with some of the authors of the original studies to try to replicate them. They many studies done in 2008 that were reported upon in major psychological medical journals. Not even close to half of them were able to replicate any of the facts given toward proof in any of these articles! And, yes, psychosomatic findings were published on CFS in 2008 and their erroneous conclusions were reported upon factually in our Forum and remain unproven (not replicated). A recently online article was funded by our NIH’s National Institute of Allergy and Infectious Diseases along with the ME Research UK. Published in the International Journal of Psychological Behavioral Science by DePaul’s Lenny Jason and colleagues, the title was “A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS” and it found the illness in the UK and in the US to be different! How? By questioning patients! They, like others, totally ignore the fully replicated science by Dr. Yoshitsugi Hokama who, well over a decade ago, took samples of patient’s blood apart molecule by molecule from many countries including the UK and the US. And, indeed, he found them exactly the same! That fact also proved that the cause of this illness could not be anything from nature. Dr. Hokama published, as always, in the Journal of Public Laboratory Analysis. That particular medical journal, before printing any article, must first be able to fully replicate the work in their own laboratory. Disregarding actual scientific fact, the authors wrote, “These findings suggest that there may be important differences in illness characteristics across individuals with CFS in the US and the UK, and this has implications for the comparability of research findings across these two countries.” Their findings are merely questioning patients and having them fill in a survey! Their “implications” totally disregard scientific fact. Indeed, the Lancet Psychiatry recently published a follow-up to their original PACE trial that, once again, found GET and CBT were wonderful therapies. They even found that “chronic fatigue syndrome” wasn’t even chronic! And they, too, used a survey for their patients instead of actual replicated science. They, just like the “Solve ME/CFS Initiative” ignore the science which has already, via replication, become scientific fact. I live in Massachusetts where the only nuclear power plant that exists is located in Plymouth and is aptly named the “Pilgrim Nuclear Power Station.” Indeed, it is owned by the Entergy Corporation and built exactly like another of Entergy’s recent disasters that was called Fukushima. Since the Pilgrim Nuclear Power Station has had so many problems and actually lost money (about $40 million just this year) for Entergy, it is scheduled to be closed. When Entergy’s president, Bill Mohl, held a press conference, he said that “safety and security” would be “our top priority” but history has already proven that isn’t true since closing the plant will not end the problems. In fact, even an editorial in the Boston Globe reminded readers that “this ending is in many ways just a beginning. Spent nuclear fuel remains dangerous for 250,000 years.” One intellect, Professor Emeritus Richard Clapp, who was the Director of Public Health at Boston University and Director of a cancer registry, has found increased leukemia and excessive thyroid cancer in Massachusetts surrounding the plant and a video of him presenting the evidence of cancer rates up 3-fold is available online if one looks at YouTube. This problem is, indeed, a world-wide problem. In a not-so-new “summary of objection” submitted by Cecily Collingridge on the planning of a new nuclear power plant for Hinkley Point in England by EDF Energy, the health problems often mentioned this particular illness. Indeed, Cecily’s background “has covered risk-assessment, environmental modeling, socio-economic and health impacts upon affected populations.” But what has that got to do with CFIDS/ME? She wrote, “Of possible environmental causal factors, radiation is definitely implicated. ME/Chronic Fatigue Syndrome is widely reported in Chernobyl studies.” She asked England’s ME Association about “trying to find out the distribution of ME, a neurological disease, in the UK and whether there were any known clusters and their proximity to nuclear facilities.” She received a reply from Dr. Derek Pheby who agreed that a cause of radiation for ME was more than possible and who wrote, “I certainly wouldn’t rule this out.” He couldn’t confirm it, “Because, I’m afraid, the work simply hasn’t been done.” Or, perhaps, was the work, done by the lead scientist at Chernobyl**, simply not being admitted to by the ME Association? Psychological? Yet pure scientific fact has proven radiation affects the same channel in the human body that was proven (yes, fully replicated) to be affected by “CFS” by Yoshitsugi Hokama, Ph.D. when he was being funded by the NCF. Indeed, radiation uses the exact same part of that pathway in the body as this disease! Another fact put out by Ms. Collingridge was that females “are more sensitive to radiation.” Doesn’t that fact sound all too familiar to PWC/MEs? Studies done in France and Germany have found excess disease around radiation sites as well but any studies done in the United States in this area have not been made public.*** The NCF, however, has continued to fund science and we will continue to refuse to hide the results of what has been scientifically proven. Hopefully, our funding will lead to a therapy for us all. *The original medical journal article continues to be offered to our members.
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The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606