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By Gail Kansky

Summer 2016

One person, Diane Grant, said, “It’s better to walk alone than with a crowd going in the wrong direction.” The majority of the patient community is excited. Our National Institutes of Health is going to study “ME/CFS.” They tried to cover up how the CDC stated, just months ago, that there is no immune dysfunction in CFS and how ME was taken off of our country’s diagnostic code list nearly two decades ago. Yet the stated hypothesis of the NIH’s study is prove “post-infectious ME/CFS is triggered by a viral illness that results in immune-mediated brain dysfunction.” Don’t be naïve enough to believe that since science has already proven otherwise.

The National CFIDS Foundation came into being in 1987. Just a couple of years before, Dr. Kenny L. De Meirleir of Belgium found a part of the immune system that protects all humans from both viruses and bacterias is slowly being decimated in those with CFIDS/ME. That part is called Stat-l. There are specialists in Stat-1 in France and several other countries and they all agree that only an extremely short list of viruses and bacteria can cause this immune dysfunction. The newly formed National CFIDS Foundation funded the Wisconsin Viral Institute to replicate those findings and Drs. Konstance Knox and Donald Carrigan did so. Replicated research becomes fact. Dr. Knox announced the results at an AACFS (now the IACFS) conference. The Institute was not allowed to publish nor were they allowed to be funded by the NCF for any other study. Although the study with the results stayed on their site on the internet for decades until the Wisconsin Viral Institute was sold just a few years ago, the CDC would not acknowledge its existence. But today, the NIH is about to begin work with the primary goal being to determine “whether post-infection ME/CFS is caused by a viral illness resulting in an immune dysfunction.” That’s been done! Decades ago!

Avindra Nath, M.D. is the principle investigator and the study will enroll 100 participants. Only 40 will be patients who have been sick for at least 6 months, 20 will be healthy controls. The rest will have post-Lyme disease and functional movement disorder. Why the last two participating groups are in a “ME/CFS” study is anyone’s guess but ignoring science seems to be a specialty of “Uncle Sam”.

In the early years of this century, the NCF funded the expert consultant to every U.S. federal agency, Yoshitsugi Hokama, Ph.D., who proved with fully replicated science that the cause of our illness was a toxin that was not from nature. That, alone, would eliminate every virus known to mankind. He didn’t test 40 patients but actually tested thousands from all over the World. Indeed, CFIDS was exactly the same as ME. It was right after that replicated finding was published that the CDC eliminated ME from this country’s diagnostic code.

This is, as all should know, not the first time that the NIH has studied “CFS”. Indeed, in the 1980’s, the NIH tried to prove that this illness was psychosomatic. Of course, they failed but they did participate in funding the first British CFS psycho-babbler heavily. This new study will be under the National Institute of Neurological Disorders and Stroke. Their director, Walter Koroshetz, M.D., assured the patient cormnunity that “we’ve had multiple meetings with experts in the field and with advocacy groups” although “we may not have reached out to everybody.” There are only two national groups. One group always readily agrees with the government and is helped financially by them. The other, the NCF, refuses to accept federal money and refuses to agree with what they find scientifically untruthful. The first national group was contacted. We were not.

The lead investigator of this new study is Dr. Brian Walitt who has, as recently as less than a year ago, stated that he felt both fibromyalgia and “CFS” were psychosomatic. Would his bias make any difference? Last October, the NIH said it was going to “strengthen efforts” to find better prevention and treatment. How can the NIH “prevent” radiation that is in the air and in the water? How can they treat radiation? If they know how, they haven’t told anyone else which is why our last grant of $150,000 went to Dr. Carmel Mothersill to try to find something that will block where she has found the damage initiates on a regular basis.

In one of the articles placed on our site on the internet, the symptoms of the clean-up workers from the 20 year old Chernobyl disaster are listed and they sound like someone reciting the “Checklist of CFS/CFIDS Symptoms” compiled from data by Paul Cheney, M.D., Ph.D., Jay A. Goldstein, M.D., Anthony L. Komaroff, M.D., and Daniel Peterson, M.D. If they were asked today about what the NIH is doing and were truthful, We’re sure they’d all agree it was pure rubbish. We wonder how the taxpayers Would feel if they understood what their taxes Were going to fund.

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