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By Dan McBride

From Spring 2015 Forum

Why would our government want to bury a disabling disease and all the important proven science relating to it? For years, we asked that question and yet found no good answer. Then we finally understood! If our government admits the cause of CFIDS/ME, the patients would point their fingers directly at the federal agencies as one, among many other nations, that have caused the illness. Radiation, we found via many intelligent scientists, is an ongoing problem. A high rate of it causes horrendous bodily harm and a low rate of it is known to cause severe harm as well! Even Albert Einstein agreed that there is no safe level of radiation. So what is a government to do to make sure that nobody knows? How about handing off the disease to the Institute of Medicine and paying them a hefty $1 million to make it seem like no big deal?

Why did this follow a year of meetings that our National Institute of Health held in secret until one that they had asked to join them, Robert Miller, shared the secretive information on his Facebook page? Their own Pathways to Prevention (P2P) process was, in the government’s own words, “To identify methodological and scientific weaknesses in a scientific area and move the field forward…” So why did they begin and continue to meet in secret? Why would Freedom of Information requests refuse to acknowledge the meetings of the P2P meetings? Why did two groups be chosen to participate yet never mentioned that they were part of the P2P as the secrecy continued? Why were those same two groups, the CFIDS Association of America (CAA), now called the Solve ME/CFS Initiative, and PANDORA the exact same two groups who supported the IOM’s task of renaming and watering down the diagnostic criteria so that it could be applied to so many other diseases? When the P2P was discovered, advocates complained, via many methods along with demonstrations, but the NIH made it clear that they did not want to hear the truth from any patients or any federally approved charities that could actually provide true information.

On February 10th of this year, the Institute of Medicine (IOM), just like our own federal government, ignored all the most significant proven science. In advance of that, to prepare the way, our government made sure that our efforts of funding science and the remarkable progress that has been made, is hidden as much as possible along with all the science that has proven to substantiate this disease as not only real but very damaging. One example is never mentioning any of the science known in the early 1990’s that showed patients did, indeed, have the exact same B-cells and the exact same T cells that were abnormal in AIDS but, unlike AIDS, the damage had just the opposite abnormalities such as the helper T cells being too high in one and too low in the other. Another example is shutting down testing by the John A. Burns School of Medicine (University of Hawaii) that proved what they called “CFS” was actually a proven autoimmune disease. They had already made sure that the replication of a slow decimation of part of the immune system known as Stat-1 was not published although that replication, done in the 90’s, was fully completed by Drs. Konnie Knox and Don Carrigan from the Wisconsin Viral Institute.

On that fateful day in February, our government paid a committee of the IOM to not only rename our illness “systemic exertion intolerance disease” (SEID) but to also change the diagnosis to one that could apply to any person who actually had a mental, i.e. it’s all in your head, disease. In a report of several hundred pages, the IOM stated in their titled paper called, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness”, that a “Diagnosis requires that the patient have the following three symptoms:

  1. "A substantial reduction or impairment in the ability to ingage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest,
  2. “Post-exertional malaise, and
  3. “Unrefreshing sleep”

And the IOM said patients must have “At least one of the two following manifestations is also required:

  1. “Cognitive impairment or
  2. “Orthostatic intolerance”

“Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.”

Seriously, is post-exertional malaise as destructive as the decimation of part of one’s immune system that is called Stat-1? Or, for that matter, is “unrefreshing sleep” slowly leading one toward toward cancer as found and published by our very own government as destructive?

I’d just like to now quote some of those who knew, very well, how ridiculous and degrading this IOM redefinition was as people who are a lot smarter than I am feel the same way. One, who calls himself “Danny Ze-dog”, wrote online, “There is a serious flaw in the premise and design of the Institute of Medicine’s new ME/CFS definition. In a nutshell, the new definition lacks any exclusion criteria or even differential diagnostic suggestions to guide clinicians in making accurate diagnoses. This is a surprising omission that could render it, in practice, highly non-specific, and thus ultimately detrimental to patients both with and especially without ME or CFS who appear to meet its criteria…”

What about the so-called “CFS specialists”? Just one was not only truthful, but was one of the first to comment. Dr. Derek Enlanderput on his Facebook ( page, “I have read the IOM report and the defense by Lucinda Bateman. I applaud the notion of reviewing the disease that we have, in the past, called Myalgic Encephalomyelitis (ME), Post Viral Fatigue, Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Deficiency Syndrome (CFIDS) and a panoply of other terms. The report may induce the medical community and the public at large, to consider this diagnosis as a physical condition rather than a trivial manifestation of the patient’s imagination. The criteria for a diagnosis has been reviewed for at least two decades including Holmes, Fukuda and the Canadian Consensus and now the IOM criteria. A huge problem of the IOM criteria is the total lack of exclusions which are contained in previous criteria. It is peculiar that Lucinda Bateman did not see this problem in her specialist opinion. The IOM criteria, as they now stand, can include psychiatric induced fatigue or simple fatigue conditions. There are, virtually, no exclusions.” Dr. Enlander is in New York at the Mount Sinai School of Medicine while Dr. Bateman was funded by another group to just test for post-exertional malaise (PEM) and, evidently, as a member of the IOM committee, knows zip about all the already existing and fully proven science.

Dr. Bateman defended herself in a long and drawn out reply including, “The clinical diagnostic criteria in the report are core symptoms drawn directly from the published ME/CFS literature — much of which came from Dr. L. Jason’s works and the CDC multi-site study — informed by selfreported symptoms from patients of ME/CFS specialists (Klimas, Peterson, Natelson, Levine, Lapp, Podell, Kogelnik, Komaroffand Bateman) and the SolveCFS Biobank.” O.K., let’s take those one by one. Dr. Klimas refuses to admit she actually published on the B and T-cell abnormalities in the early 1990’s. When asked about this at a questioning panel of the then called “AACFS”, her answer was, “Now, we’ll have none of that!” None of what? The truth? And, yes, all the others are fully aware of this particular national group, the NCF, that has funded so much research that others have hidden. Komaroff? Yes, he was one of those on the committee to change the name and has been paid by the CDC for years so he can “advise” them on CFS! Lapp? He puts patient’s lives at risk by authoring the anesthesia protocol that is pure nonsense when the actual harm of anesthesia was discovered and fully replicated by Dr. Yoshitsugi Hokama years ago. This group, the IACFS, is only too willing to sacrifice the lives of patients and have encouraged them to take their misinformation in their Primer further and distribute it to medical professionals! And the biobank she mentioned was merely a collection from those claiming to be patients and that was one of the two groups that both were part of the secret P2P and were happy with the IOM results. Peterson? Konnie Knox now works for him after she was “persuaded” not to publish on the Stat-1 decimation. And I could go on and on…

Another patient said it even better. On his blog, Jerrold Spinhirne wrote, “The US Department of Health and Human Services (HHS) has paid the non-profit Institute of Medicine (IOM) ( $1,000,000 for the naming rights to the established neurological disease Myalgic Encephalomyelitis (ICD G93.3 ME). This is not science, but the exercise of raw political and economic power. The ridiculous name the IOM committee came up with after ‘much thought’ has no legitimacy whatsoever and should be scrapped before more precious time and resources are wasted. The disease was named myalgic encephalomyelitis originally in a 1956 Lancet editorial later attributed to Dr. E. Donald Acheson. Drs. A. Melvin Ramsay and John Richardson also used the name ME at this time. The name, ME, was based on careful clinical examination of thousands of patients from over a dozen outbreaks of the epidemic form of the disease beginning with an outbreak in Los Angeles in 1934. The 1956 Lancet editorial, ‘A New Clinical Entity’ said this about the name of the disease: ‘From the purely practical standpoint it would be useful to have a name for this syndrome. As the most helpful single feature in the recognition of this syndrome in the past has been the predominately normal cerebrospinal fluid, the names which have already been suggested, ‘Iceland disease’ and ‘Akureyri disease,’ are not really appropriate. The objections to any but a purely descriptive name for a disorder without a known cause or established pathology are obvious. For this reason, the term ‘benign myalgic encephalomyelitis’ may be acceptable. It in no way prejudices the argument for or against a single or related group of causal agents; and it does describe some of the striking features of a syndrome characterized by:

  1. symptoms and signs of damage to the brain and spinal cord, in a greater or lesser degree;
  2. protracted muscle pain with paresis [partial paralysis, muscle weakness] and cramp;
  3. emotional disturbances in convalescence;
  4. normal C.S.F.;
  5. involvement, in some variants, of the reticuloendothelial system [part of the immune response system];
  6. a protracted course with relapses in severe cases; and
  7. a relatively benign outcome. [Death did not occur immediately after onset.]

‘It remains to identify this syndrome more precisely; but we believe its characteristics are now sufficiently clear to differentiate it from poliomyelitis, epidemic myalgia, glandular fever, the forms of epidemic encephalitis already described, and, need it be said, hysteria.’ This is the history of ME that HHS is seeking to erase by hiring the IOM. Making ME disappear serves several purposes for HHS:

  1. It covers up the series of errors and misconduct at the NIH and CDC in dealing with the disease beginning 1985.

‘HHS wants to preserve the perceived authority and credibility of these agencies, even if it means contributing to increased levels of disability and premature death in the population.

  1. It protects the economic health of the private insurance industry which HHS evidently values more highly than the public health.
  2. It saves HHS the cost of appropriately funding research on a major neurological disease.

‘Instead, HHS gets away with spending a pittance every year on a trivialized fatigue-based illness that has been greeted with skepticism by doctors and the public.

‘Seeing that the deception created around CFS was breaking down after 30 years, HHS wants to begin the cycle afresh by creating a new, updated version of CFS, using the IOM, with yet another inappropriate, trivializing name

‘This new pseudo-diagnosis will then be used to bury ME even further.”

The IOM has managed to further the vagueness of the “fatigue” by merely using “exertion intolerance” in its place. The NCF has already funded science that has proven so much and the chromosomal abnormalities demonstrated, once again, what a huge injustice has been suggested by the IOM.

Indeed, as found in a recent issue of the Proceedings of the National Academy of Sciences, science has found that the decades old Bubonic Plague was not spread by fleas carried by rats but by fleas that were carried by gerbils. For so long, we’ve been told to hate the rat for the horror they spread during a European plague. The rat has finally been exonerated! But the National Academy specifically blamed the rat for decades and decades and the IOM is an arm of that very same National Academy. How long will it take them to admit, truthfully, the cause of CFIDS/ME that has already been found by others including the lead scientific researcher from the Chernobyl disaster? Will others believe it when it has, once again, been proven by funding via the NCF or will they, too, continue to be dismissal of scientific proof?

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