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By Gail Kansky

Summer 2015

This “message” was written before our medical committee added so much more truth that explains our CDC’s actions in their efforts to bury the truth. If you haven’t yet read the first story in this edition, read it first for a real eye-opener on why they have been so determined to obscure the truth about this disease as well as about Gulf War Illness and how much more knowledge they, along with all the “specialists” for this disease have been hiding.

To this day in 2015, our own CDC does not recognize the immune dysfunction nor any of the fully replicated science that has already occurred. They seem determined to trivialize the disease despite all the scientific advances including those made by our government’s own National Cancer Institute (NCI) that found, in 2012, that the National CFIDS Foundation was right when they said the disease was a slow progression toward cancer. The NCI’s paper, published in a medical journal, has been available to our members since publication although it seems that information is unknown on any other part of the internet.

Their trivialization and their silence of new developments have not stopped the progression of science. It has certainly not stopped this charity from funding advancements as we remain determined to not only, once again, prove the cause but also are determined to find a viable treatment so that we may finally close shop and have a chance to live our lives as we should have been able to decades ago.

As our Medical Director, Alan Cocchetto, stated in 2005, “At the NCF, our goal is to be the best stewards possible for the contributions that people throughout the world have so generously provided. It is our duty to allocate support for quality research that will provide long-overdue scientific answers for this disease. We have made great strides based on our outcomes assessment. Now, let’s continue these efforts to finish what we’ve started!”

While others fund research around the vast perimeters of this disease, we will continue to see what can be scientifically proven that directly targets the actual cause. We refuse to join the ranks of charities where paid employees are afraid that they will face unemployment should they actually and successfully fund work to seek actual cause and treatments for CFIDS/ME. Indeed, this continues on in this country and is illustrated again and again. Only one small example is the Hutchins Family Foundation that has put “$10 million into Chronic Fatigue Research” according to their own website. That site will also inform all that spend a lot of money on those that are active in their initiative that include some well-known names to the patient community that include Drs. W. Ian Lipkin, Mady Hornig, Susan Levine, Daniel Peterson, Lucinda Bateman, and Nancy Klimas. Yes, they all are working on “chronic fatigue” and rarely call it anything else and they all are well paid to complete and publish work that was found and proven decades ago. One of the latest examples can be found in the medical journal put out by the IACFS entitled “Fatigue” that was published in April of this year by Dr. Klimas but also included the following authors: G. Ironson, A. Carter, E. Balbin, L. Bateman, D. Felsenstein, S. Levine, D. Peterson, K. Chiu, A. Allen, K. Cunningham, C.G. Gottschalk, M. Fletcher, M. Hornig, C. Canning, and A.L. Komaroff. The paper was entitled “Findings from a clinical and laboratory database developed for discovery of pathogenic mechanisms in myalgic encephalomyelitis/chronic fatigue syndrome” and the conclusion of that study was that “Clearly, ME/CFS is not simply a state of chronic fatigue. These data indicate that fatigue severity is matched by cognitive, autonomic, pain, inflammatory and neuroinflammatory symptoms as the predominant clinical features.”

This study, that cost so much money to pay for the input of all the “specialists” named, found nothing that was not already mentioned by journalists and scientifically proven as well as published in the early 1990’s! In fact, these authors continue, in their conclusion, to mention that “These findings may assist in the clarification and validation of case definitions” and further state, “Framing ME/CFS as a multisystem disorder may assist in developing therapies targeting the multifaceted domains of illness.” How, without admitting the cause and directing a way to treat that particular cause of an illness, can anyone develop any “therapies” that would be helpful? Has any other autoimmune disease that is “multifaceted” yet lacks the knowledge of causation have any “therapies” that allow the patient to regain a normal life? I can’t think of any.

Nancy Grace Klimas, along with all the other authors named above, have nothing new that they’ve added in their paper from 2015. That fact applies to many others mentioned as well. In fact, one of the articles printed in a magazine called “Awake” 23 years ago reported on all these “multifaceted” problems as well as mentioning the problems being funded and published in medical journals over two decades ago. Just one, mentioned in that 1992 article, described the problems of cytokines in “CFS” that is being announced today as some exciting new science that researchers, via the internet, are pleading with the patient community to help fund. In that 1992 article from Awake, it explains: “A healthy immune system responds to an enemy virus, or viruses, by releasing chemicals, called cytokines, to fight the invader. However, when the emergency is taken care of, the production of cytokines normally ceases. But in CFS patients the immune system apparently fails to shut off. Significantly, a consistent finding in people with CFS is an increased production of cytokines. This is important since it is not the virus that makes a person feel sick when it invades body. He feels ill because his body cells are producing cytokines.

The real question that article stated decades ago was “What causes the body to keep producing cytokines when it should have ceased production?” That same article quoted our first medical director, Dr. Jay A. Goldstein, who answered, “A latent virus is activated by some sort of a trigger which makes the cells of the immune system produce (cytokines) in abnormal amounts.” Indeed, another physician is quoted in that same article from 1992 that wrote the protocol for anesthesia published in the IACFS’s Primer that is based absolutely no science at all, Dr. Charles Lapp, who said, “Stress is one of the biggest triggers we see.” Indeed, well over two decades later, Dr. Lapp, just like the CDC did then and continues to this day, ignores all the science that has been carefully and fully replicated which makes it scientific fact. When the NCF’s entire cohort of patients was tested for radiation and every one of them were found positive, the work was done in the same laboratory that is used by our own Federal Government. That cause is never mentioned by those researchers as that would make their own work and their own beliefs be proven to be quite meaningless.

For patient pacification purposes, our government now refers to our illness as “ME/CFS” yet the CDC eliminated ME from the diagnostic code years ago. If no physician is allowed to diagnose a patient with Myalgic Encephalomyelitis, why does our government use the term of “ME/CFS”? Indeed, just as another charity dropped the term of “immune dysfunction” (ID) from their title that included “CFIDS” and adopted the same pacifying abbreviations from our government, they now fail to mention the immune dysfunction and even claim it has never existed despite scientific articles from the early 1990’s, including the one already cited, that had not only proven the immune dysfunction that existed but even proven the exact B and T-cells that are abnormal markers of CFIDS/ME. It was the mid-nineties that the replication of the slowly diminishing part of the immune system called Stat-1 was successfully completed by the Wisconsin Viral Institute funded by the National CFIDS Foundation. That particular successful replication was publicly announced at an AACFS (now called IACFS) conference where they, like our government, continue to ignore that scientific fact. That work remained on the website of Wisconsin Viral Institute for years until the Institute recently sold out to Coppe Laboratories that studies Lyme Disease. We continue to offer our members a printout of the original replicated work first found by Dr. Kenny de Meirleir. He described the decimation of Stat-1 in CFIDS/ME in a patent but he has never given it to a medical journal for publication nor has he, to my knowledge, ever mentioned it to others. Both the CDC and the other national charity disregard the very facts that have proven the immune dysfunction that slowly leads toward cancer in CFIDS/ME and, instead, call “post-exertional malaise” (PEM) the “hallmark” of the disease. This fairly insignificant symptom is the way they both continue to disregard the proven immunology completely!

While this country ignores the immune dysfunction proven so long ago, England and other countries have many “psychobabblers” that report upon the psychiatric aspects of ME despite that having been disproven when Dr. Seymour Grufferman, formally of the NIH, advised the patient community to call it chronic fatigue immune dysfunction syndrome instead of CFS. And we’ve followed his advice given when our government changed the name to “CFS” in the 1980’s. JAMA (Journal of the American Medical Association)reported, in November of 1991, that patients “are not victims of depression or other psychiatric problems.” A month later, Science reported that “CFS patients have altered levels of certain brain hormones… decreased levels of the steroid hormone cortisol, and increased levels of the pituitary hormone ACTH (adrenocoricotropin hormone), exactly the opposite of the changes seen with depression.” Even the medical journal article summaries from this issue are still looking into depression led by Nancy Grace Klimas, M.D. (see Medical Journal Summaries and the May article from Fatigue put out by the IACFS) when they knew that depression was disproven to be a part of CFIDS/ME decades ago.

While denial and silence have invaded so many studies in the area of CFIDS/ME, it merely serves to make us even more determined. As one can see from the first article in this issue, we refuse to stop until we have the answers that will help every patient that, like us, suffers daily from CFIDS/ ME. To do that, we cannot and will not ignore the immune dysfunction that is, indeed, the real hallmark of this disease nor will we pretend to be ignorant of the real cause of our immune dysfunction which is why we have funded one of the world’s leading radiation experts. Yes, it has already been proven but we will have it proven once again and work toward a therapy that can be shown to block the actual “hallmark” which is causing our particular immunological dysfunction.

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