By Gail Kansky

Spring 2015

Systemic exertion intolerance disease (SEID)? No, the National CFIDS Foundation will not accept SEID any more than the NCF would ever accept Chronic Fatigue Syndrome (CFS). The newly named SEID does not apply to those who have immune dysfunction any more than CFS did. Why would our federal government refuse to consider the name of Myalgic Encephalomyelitis in the late 1980’s when the CDC appointed a committee to rename the scientifically proven erroneously named Chronic Epstein-Barr Virus (CEBV)? The answer is simple. They did it for the same reason that they paid $1 million to rename the illness SEID. They don’t want to admit the truth and acknowledge that the cause may be partially due to them for poisoning the planet any more than any other biologically advanced country wants to admit that fact. As one patient from Boston (and a Ph.D.) remarked to me online, the IOM was “not just sad but malevolent.” What the National CFIDS Foundation is addressing is people who are suffering from a serious immune dysfunction and our research funding will continue to address the real cause which is chronic low-level radiation poisoning. Via our funding, we will prove it once again as it has been proven by others years ago including our own government. Hopefully, our funding could even discover a therapy to help us block the main ongoing damage that has resulted from the low level of radiation that is slowly progressing toward cancer.

The CDC committee that renamed this disease chronic fatigue syndrome was carefully chosen and, as we’ve related many times before, told those committee members who were not willing to call it “CFS” to resign and not get their name on the medical journal paper as one of authors. Several did resign when they found out they would have to ignore what they already knew. The IOM committee was also carefully chosen. The few on the IOM committee that actually knew anything about the disease were ones that have demonstrated how they have and would continue to hide proven and fully replicated facts in order to receive funding from the NIH or from the CFIDS Association of America (now SolveCFS/ME Initiative). One example is Nancy Grace Klimas, M.D.who was the very first to receive funding from the NIH for “CFS” in the 1990’s after so many others, who wanted the funding to prove new scientific information about the illness, had been turned down. After she had already published on specific B and T cells that were found abnormal, she never mentioned that information again. Indeed, the IOM committee was quoted saying, “Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted.” We agree about the “effective treatment” as, for that to happen, the cause must be addressed. The rest of their information pretends that they are totally unaware of much of the research funded by the NCF or even the work done by Department of Defense (DOD) on low level radiation. Does anyone remember that “CFS” was put under the DOD years ago?

Why would they reward A. Martin Lerner with being on the committee when he claimed this illness was caused by the Epstein-Barr Virus and if a patient wasn’t positive, he refused to treat them? Why Lily Chu, who is only an IACFS promoter, who refuses to include fully replicated science in the Primer? And why Peter Rowe, who would have all believe that orthostatic hypotention was a major part of this illness and he discovered it when that particular part of the illness was really found by the late and great David Streetenand not considered a major part? Take a look at the reviewers and you’ll find more who have agreed to make a mockery of this illness such as Susan Levineand Daniel Peterson, evidently for the money offered.

The proposed diagnostic criteria given by the IOM required fatigue, post-exertional malaise and unrefreshing sleep. It also requires either cognitive problems or orthostatic impairment. Every one of those have been on our checklist of symptoms since our founding and it doesn’t mention the dozens and dozens more despite many of them having been proven scientifically such as the 90% that have non-restorative sleep proven by a Canadian researcher in the 1990’s. To quiet that particular researcher quickly, the CDC hired him and he was not heard from again. He is now retired.

But is the newest name, “systemic exertion intolerance disease (SEID)” one that will even allow so many other entities to be part of this, including mental illnesses, our fault? As one patient pointed out to me, if you spell SEID backwards, what does it say? We went further and further with our funding that saw this disease to not only be scientifically proven to be autoimmune but work has proven demonstrated chromosomal abnormalities. Is that why the federal government pretends that the NCF doesn’t exist even though we are a federally approved charity? The government began their cover-up long before we came into existence. They were a major reason for our formation when we saw both state groups and even larger groups accept their erroneous information without hesitation. In fact, on a recent NBC Nightly News presentation, Carol Head, who is the CEO of the CAA/SCI group, called the IOM committee’s work “delightful.” We don’t agree. And, indeed, the recent work showing our chromosomal aberrations were even higher than those found in GWS (who also had their name changed by the IOM a year ago but not accepted due to major objections). We’re determined to keep going forward until not just the cause but an actual therapy is proven. Shoving this illness, along with our charity, out of sight has never nor will it ever stop us.