By Gail Kansky
Well before the National CFIDS Foundation came into existence in 1997, there was a conference on “CFS” that was held in San Francisco, CA by the American Association of Chronic Fatigue Syndrome (AACFS). An advocacy group from that area sold t-shirts. One had a question mark surrounding “CFIDS” on the front. On the back, the shirt had the following:
“Things a person with Chronic Fatigue Immune Dysfunction doesn’t want to hear:
Nearly two decades later, what has changed? Nothing that is being admitted to by anyone else but, in actuality, a lot! Today, it has been proven that “CFS” is an autoimmune disease via fully replicated research (Hokama et al, 2008) despite the CAA/SCI telling patients, “Many other illnesses have symptoms that mimic ME/CFS symptoms. History, physical examination and medical testing is required to determine if you have an active disease that could explain your symptoms. The following lists some of the more common conditions and diseases that mimic ME/CFS: Autoimmune diseases such as Rheumatoid Arthritis, Lupus… Cardiac disease, Endocrine disorders… Infectious diseases… Neurological disorders. The World Health Organization has listed “myalgic encephalomyelitis” as a neurological disorder for decades and even our own CDC admits the “infectious” part when they say it “runs in families” yet the science has ruled out a genetic causation. Many endocrine problems have been proven such as the thyroid problem found by Dr. Byron Hydein 2008. We know the heart is one of the two main targets of the disease. The new name of the former CFIDS Association of America has not only dropped the “ID” (immune dysfunction) of their name, but also promotes a disease that does not let anyone know about the fully proven ID facts and promotes the International Association of Chronic Fatigue Syndrome (IACFS), formally the AACFS.
The IACFS, too, has joined many others by refusing to acknowledge any of the important scientific advances. In their updated Primer for medical professionals, they list two pages about what to do if, as a patient, you’re facing surgery. Charles Lapp, M.D., wrote on which supplements to avoid despite the correct anesthesia problem having been discovered (Hokama et al, 2006). When I, personally, complained to Fred Freidberg, principle author, Associate Professor of Psychiatry and IACFS President, he replied that my complaints were “silly” yet fully replicated science is what is known as scientific fact. Their Primer actually puts the lives of patients at risk. What has happened to PWC/MEs from the incorrect anesthesia in the past and continues to this day? If any anesthesia is used that accesses the sodium channel, their heart stops during surgery. Of course, the physicians present there can restart it, but the damage remains. The sodium channel has been proven to be the pathway in the body that the cause of CFIDS/ME uses. And, indeed, it is that exact same area of the sodium channel that is used by ionizing radiation.
Why would any charity, as do both the IACFS and the CAA/SCI, omit letting a patient know about some of the most important research discovered? History gives us the answer to that. Indeed, the last charity that discovered the cause of any disease was the March of Dimes when the cause of polio was discovered. They went from being the largest charity in the United States to nearly going bankrupt. They still exist and “works to end premature birth, birth defects and infant mortality” but few, today, have even heard of them.
During an AACFS conference held in 2005 in Madison, WI, a presentation was made by Dr. Konstance Knox that proved a part of the immune system that protects us all from viruses and bacteria, Stat-1, is being slowly decimated in “CFS”. The researchers had used three FDA-approved tests yet none are commercially available to this day. This was a replication of work that was initially discovered by Dr. Kenny De Meirleir of Belgium and, more recently, of the Whittemore-Peterson Institute (WPI). Instead of sharing this important news, De Meirleir merely put it in a patent. He, too, remains an important member of the AACFS/ IACFS. Had he shared his discovery openly, we would have been years ahead in research as there are only a few viruses that have that capability and all that do have been ruled out as being causative. Is that why our own CDC is now saying they will look for a viral causation? Is that why the IACFS Primer denies science by stating in print: “subjects are not immunocompromised”? Is that why our NIH has funded psychobabblers like the UK’s Dr. Peter White to spend our tax dollars on CBT? Is that why the IOM (Institute of Medicine) is trying to come up with more to call this a mental problem yet stays quiet (or ignorant) about what has already been proven? Read our medical director’s front page article in this issue and then ask yourself, “If it looks like a duck, quacks like a duck…” etc.
The questions that arise about why proven scientific facts continue to be withheld or not acknowledged publicly are multiple. We have no doubt that many physicians and even some researchers know about all the information that is being withheld. In most cases, full medical journal papers are on our site on the web. Despite the reluctance of many to be truthful, we know we’ll continue on. We thought we’d have been able to tell you about the newest research in this issue but the details are taking a bit longer. We’ll get information to you by the winter Forum.We came, we saw and we’re determined to conquer!
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606