From Summer 2009 Forum

"Did the National CFIDS Foundation get an alert from the Centers for Disease and Control and Prevention (CDC) about their meeting on strategic research plan?" I asked. Yes, they not only got an "early alert" call from the CDC about the so-called "stakeholders meeting" but told the woman making the call on behalf of the CDC that the CDC is not addressing CFIDS/ME and, therefore, the meeting is of no particular interest to the NCF. I was further told that the women protested that the name of our group was the National CFIDS Foundation and that CFIDS meant CFS. The NCF explained to her that the CDC is using an Empirical Definition now that does not apply to the neurological disease of myaglic encephalomyelitis (ME) and that ME was what the NCF was referring to when they called it CFIDS and they have adamantly refused to call it CFS since it isn't CFS.

But let me begin at the beginning. Last November, the CDC got an "external peer review" written by a few medical professionals that they understood would tow the line for them and not be very harsh. The panel of external reviewers were Matthew Boulton, M.D., Anthony Komaroff, M.D., Gudrun Lange, Ph.D., James Oleske, M.D. and Peter White, M.D. These are all political animals, so to speak, that can always be counted upon to act politically correct no matter what. For instance, Tony Komaroff, despite diagnosing CFIDS/ME since the early 1980's, has refused to ever write a letter of disability for one of the many hundreds of patients he treated. Not one. And Peter White is a shrink who is one of the famous psychobabblers that puts this under a somataform illness and has been paid by the CDC for many to collarborate on many occastions. So what did this group of yes-men find in their "extenal review"? They found the CDC was the best place to do the research of CFS as well the best for providing information about it. Now, keep in mind that the new Empirical Definition used by the CDC and written by the CDC is made up of three psychological tests and studies have already shown that it identifies those with major depressive disorder (Jason et al). Not only that, but the CDC, as this newsletter has previously reported, states in their course, WB1032, that gives an overview for CFS: "There is no case definition for CFIDS" and "The name myalgic encephalomyelitis (ME) was coined in the 1950's to clarify well-documented outbreaks of disease, however ME is accompanied by neurologic and muscular signs and has a case defintion distinct from that of CFS." Keep in mind that the CDC deleted the diagnostic code for ME when they came up with their new Empirical Definition and that they have refused to admit to any outbreak of ME in the United States to this day despite medical journal articles reporting upon them.

Hence, this politically correct "external review" found that the CDC is doing a great job and should continue it for the next five years! They found their new definition "on psychometric opertationalization of the existing 1994 case definition should improve the reliability of research" and that the CDC "had done much to elucidate the pathophysiology of CFS." They lauded the CDC taking "advantage of its proximity to Emory University to engage talented clinical investigators" which were from the psychiatric department as well as "working with the University of Miami" which, when once questioned about that at a couple of years ago, Dr. Nancy Klimas" public response was, "Now, we'll have none of that." The panel disregarded that CFS was now viewed as a psychological illness and was not either "CFIDS" or "ME" but suggested they expand their collaboration with medical schools. Why? The CDC has refused to accept the work of many medical schools the work is black and white, replicated science that cannot be argued with. How do they do that? They simply ignore it. Other suggestions such as expanding gene studies were given and the need for better medications "to treat fatigue". This review committee refused to even accept that the fatigue in CFIDS/ME is a central nervous system fatigue that cannot be treated unless and until the actual cause is found yet two world-famous specialists in separate scientific endeavors found this years ago. The CDC knows the cause for CFIDS/ME is not going to be the one that they're looking for in "fatiguing illnesses". This review panel even commended the CDC for their educations such as "The 31 Grand rounds presentations given by the CDC MDs" that were "attended by 4,500 physicians and other health professionals" that heard that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) improved the patient. This is also part of "the online CME programs on CFS" that nearly 1,000 health professionals have gotten. Now here's the clincher: their "summary of strategic recommendations" said "Dr. Reeves should create a 5-year strategic plan with clear milestone and performance measures". So the NCF got a call about a CDC draft strategic research plan and they refused to play in this ongoing charade of the CDC. The agenda was, after all, for "medically unexplained chronically fatiguing illnesses, in particular CFS" and it is time to note that insurance companies use the phrase "medically unexplained syndromes" in order to deny claimants as these are mental illnesses.

Well, another charity jumped at this chance to grab some attention. The CFIDS Association of America (CAA) quickly jumped onboard with announcements about the CDC wanting "input to shape a CFS strategic research plan" in five major categories. They failed to mention the new criteria that eliminates CFIDS and ME and they failed to mention that they helped author the CME program but asked for others to give their oral comments, written comments or even attend in person on April 27, 2009. But how would they work around the fact that their scientific director, Dr. Suzanne Vernon, not only worked for the CDC but was an author of the new Empirical Definition? Easy! Like the CDC ignoring ME and CFIDS, they just ignored this fact and just didn't have her attend!

Other charities found this to be to the PR advantage. One was PANDORA who "wanted to express" their "concern." Do they really believe that if they "express concern", it's going to make a huge difference to the CDC? The purpose of the public meeting was, supposedly, to get input from interested parties as they develop their "five-year strategic plan" but it's a plan for "medically unexplained chronically fatiguing illnesses, in particular CFS." They already said it's not about CFIDS or ME. The CDC has failed to protect the health of the public and failed to educate this country about ME. Instead, they ignore it quite studiously. Perhaps the initial investigations of outbreaks were purposely botched as our government has never acknowledged, to this day, that any "outbreak" ever occurred. They seem to have systematically ignore all aspects of ME despite having, at one time, listed it as a Priority 1 Emmerging Disease. They ignore all the scientifically proven research and continue to feign interest in a "mysterious fatiguing illness" while broadening the criteria repeatedly to obscure the real entity.

Fast forward to the actual meeting. During his introductory speech, the head of the CFS program at the CDC, Dr. William Reeves, laudably talked about the psychobabbler of the external review, "Dr. Peter White is a representative of, I think, the only country and Ministry of Health in the world that has developed a comprehensive program for diagnosing, evaluating, and treating CFS." He never mentioned that Peter is also trying hard to get ME removed from the World Health Organization's (WHO) neurological classification of ME or that the CDC has refused to recognize the WHO's ME classification to this day. After all, the CDC has quietly but carefully changed the defintion of ME since they coined the trivializing name of Chronic Fatigue Syndrome in the 1980's. They aren't as outspoken as the Psycobabbler's group which is often called The Wessely School that is comprised of a group of phychiatrists bent upon making ME into a mysterious fatiguing illness instead of a neurological disease. And they've been more than successful.

There were only eight people at the meeting if you didn't count the CDC folk. A few, of course, were from the CAA though their scientific director was a no-show. Hemispherx Biopharma, who's been trying to get the FDA to approve Ampligen, attended along with three caregivers. Most phoned in their comments and few — very few — were complimentary to the CDC. Through the meeting, Reeves sat with an expressionless face. Many of the callers were eloquent and some quite heartbreaking. Some were patients who always have to have their say but others were heard from for the first time. Few, if any, were talking about "CFS" but the CDC's plans are clearly to promote a psychological disease that is caused by stress. They had to broaden the criteria with their newest defintion in order to do this effectively. The CAA's K. Kimberly Kenny McCleary stated that the "CDC is the only agency that can adequately study it". Huh? So was she finally admitting the CAA is not funding any research that is adequate? She mentioned a senator that was helpful yet failed to note that her own organization foiled the Senate from taking a vote to change the name of "CFS" to "ME" many years ago. That project they railroaded was put forth by RESCIND, Inc., the NCF and the Medical Prossionals with CFIDS. John Anderson was more truthful when he said, "The CDC has systematically failed its mission to protect the health of the community with regard to the uncontrolled speard of the pandemic Myalgic Encephalomyelitis" which was quite the opposite feeling of Dr. Lonnie King, the Director of the National Center for Zoonotic, Vector-Borne, and Enteric Diseases from the CDC, who insisted, "We've certainly come a long way since the 1980's." Nancy Klimas, M.D. asked them to use the gene expression studies to find a pathogen. She neglected to say that her medical collarborates with the CDC but she said the CDC should find out if this is an autoimmune disease. We know she isn't ignorant that work done by Dr. Yoshitsugi Hokama and his research team proved this over a year ago but feigning ignorance seemed to be a trait she preferred as does the CDC. Hours of calls included one from Osler's Web author, Hillary Johnson, who said, "The CDC needs to make a formal apology to every American citizen with this disease". One real surprise was a former Harvard professor who is a Nobel Laureate, Dr. Fred Volinsky, who said he was "outraged for the lack of funding in this field… To make progress, you can't have people that don't believe it's is an organic disease." A board member of the CAA said "The history of the CDC in regard to CFS is dismal, beginning with assigning a name both trivializing and inaccurate, an inadequate and inaccurate case definition, missappropropriation of funds and poor-quality research, in terms of both the focus of its studies and its methodology." Agreed. So why did the CAA join them to "educate" these accruracies? And the CAA board member giving this presentation, Katrina Berne, admitted she "served on a commmittee whose purpose was to develop an educational curriculum for professionals. To my dissapointment, those from the CDC were ill-prepared…" Sure, their history is "dismal" and they weren't even addressing CFIDS/ME so why did she join this "recent venture" to begin with? Status? Ego? Money? The CAA's chair of their board, Jennie Spotola, said, "The CFS program is losing its vigor and relevance." Their other board member was correct. This isn't something new but something planned and ongoing since they changed the name and watered down the criteria in the 1980's. The CEO and head honcho of the CAA, Kimberly McCleary said, "You can't build a sustainable structure on a weak foundation… the empiric criteria is a weak foundation." She's right. So why did the CAA hire one the authors of this weak empirical definition to be their "Scientific Director"?

The CDC suits used the words "evidence based" but gave no basis of evidence throughout this meeting. They use the word "psychosocial" but never clarify it. There seems to be a great need to revampt the CDC. They have an infestation of rats running through the hallways and only a few of them have four legs. The CDC has tried, since 1988, to transform ME into a wasterbasket disease and their new emphasis on psychosocial is furthering that goal. Even I have to admit that they've done a good job to reach their goal. There has been a pandemic since the early 1980's and, perhaps, earlier. One federal agency misidentified it and the other relabeled it instead of taking responsible action. Wouldn't it be nice if we got the truth, the whole truth, and nothing but the truth from our government about CFIDS/ME? But we don't. And we never have. This is an ongoing charade that to be continued at the federal CFS Advisory Committee (CFSAC) in late May.

Ah, the CFSAC. We can't ask for a much weaker leadership but what a way to pretend that the federal government cares! While the death rate climbs, the CFSAC has never provided the strong leadership necessary. The CFSAC has never made one reccommendation or advised anything that has been accepted or changed CFIDS/ME in any way. Again and again, there are patients who give their 5 minutes worth of public testimony and, though it may be moving and some gain the publicity they crave, it does not change a thing. The late May two day meeting of the CFSAC was no different than past meetings except the testimony revolved around the cause du jour: the CDC. And what did all this hoopla do? Nothing. While many advocates offered their own ideas from the IACFS to the lowly caregiver for their allotted 5 minutes, William Reeves, M.D., spoke for 40 minutes and, essentially, said nothing of importance. What does he think CFS is? "It's a complex illness, with alterations in complex homeostatic systems. It's not the result of a single mutation or a single environmental factor. It comes form a a combination of many factors… genetics, autonomic nervous system, orthostatic intolerance, immune activation…" He was talking about CFS and this does not apply to CFIDS/ME. None of the testimony given by the "public" applied to CFS except, perhaps, the talk by the CEO of the CAA. Reeves showed a slide with a diagram that showed the "current model… around the brain, stress is involved, traumatic childhood stressors, allostatic load maladaptation to stressors, genes interact with ones's reaction to stress, autonomic nervous system…" He was NOT talking about CFIDS/ME but about people who just don't know how to handle stress. The "genetics" he refers to are not a disease that is CFIDS/ME that scientific genetic work has proven. His CFS is a psychosomatic illness. He called the newly psychologized definition a way to streamline the 1994 Fukuda definition. He said he was "impressed" by the April stakeholder meeting and gave vague points of the next 5 year plan such as "clinical intervention trials" but they won't and can't address CFIDS/ME. He ignored questions such as why the CDC is collaborating with predominantly psychiatrists while, at the same time, he insisted that the illness is a "non-psychiatric illness". He said, "We are in the process of planning a cognitive behavioral therapy and graded exercise tiral as part of the provider registrey population in Macon…" What's missing at the CDC's program for CFS is truth and accuracy. It has ignored both and will continue to do so no matter who is at the helm. If the CDC really believes that over 1 million people have what they call "CFS", where is their "disease prevention" that is part of their agency's name? If they really believed what they want us to swallow whole, why has the funding been so severely cut? And does any of this really matter if they're not addressing what is really CFIDS/ME?

There is a large charity who takes a lot of money from the CDC and now insists that Dr. Reeves is the problem. In fact, their CEO at this meeting of the CFSAC called the CFIDS Association of America "the largest and most active organization working to make chronic fatigue syndrome (CFS) widely understood." Even she admits the CAA no longer addresses CFIDS/ME despite their name. Smoke and mirrors has become the active drama but it has nothing to do with what CFIDS/ME is and does nothing but obscure every scientific gain. It is all a ruse, just as the CFSAC is, to placate the patient population. It continues to be a clever charade.