chronic fatigue syndrome, cfs, chronic fatigue immune dysfunction, cfids, myalgic encephalopathy, fibromyalgia, fms, Forum,  myalgic encephal, m.e., low blood volume, neurotoxin, orthostatic intolerance, multiple chemical sensitiv, National CFIDS Foundation, chronic fatigue, NCF Forum newsletter, chronic illness


By Hillary Johnson 2006

 All major diseases and most minor diseases at the NIH (National Institutes of Health) have standing or permanent review committees, meaning these committees are made up of a group of reviewers who meet regularly to review grant proposals. Theoretically, these reviewers are bona fide experts in the field of the particular disease for which research grants are submitted.
      Twenty years after the worldwide outbreak of this malady, which is nothing if not a major disease on the basis of sheer numbers afflicted in the U.S. and elsewhere, the NIH still has no standing review committee to regularly review "CFS" grants. Instead, to satisfy congressional inquiries, an NIH bureaucrat who is essentially following marching orders from higher-ups at NIH and is not a CFS expert, is asked to select "experts" to review grants on occasion. In other words, these committees are officially "ad hoc," the  implication being that NIH does not consider "CFS" important enough to create a standing committee. Perhaps less obviously, the NIH's long-standing policy of avoiding the establishment of a standing or permanent review committee is indicative of the degree of that agency's intransigence on this disease and its fear (is there any other logical explanation?) of allowing a legitimate scientific discovery process to go forward. Again, given the numbers afflicted, it is otherwise inexplicable that the NIH would have failed to create a standing review committee a decade or more ago.
      There are two very serious problems occurring here.
      One has to do with the fact that the committees are ad hoc. Ad hoc  committees, by definition, review a selection of grants and submit their recommendations to NIH bureaucrats exactly once. Members of ad hoc committees are not under any pressure to be responsible over the long term to one another or to the grant applicants. Nor does their reputation or standing in their given field rise or fall on--or have any connection to--the outcome of the research they recommend be funded. It is highly unlikely that members of this committee will again sit and face one another around the same table to discuss the quality of the last round of research, deliberate on whether they made good decisions, whether new directions need to be taken, and so on. The continuity of a standing committee is entirely lacking.
The second has to do with the constitution of ad hoc committees for "CFS." Remember, NIH bureaucrats are calling the shots here; does anyone reading this article need to be reminded of the NIH's track record of scientific progress on "CFS"? A list of proposed committee members has been listed recently on the internet. Few of these names are ones those of us who follow the science in this disease would connect up with expertise in the field. Some of the areas of expertise listed would be comical if this were, say, an Evelyn Waugh satire. Sadly, this is not satirical fiction;  this is not a bad dream; this is reality, NIH-style.
      What this situation also highlights in brutal fashion is the years' long absence of effective patient advocacy. There exists an enormous void. Panic arises appropriately at this point - the situation is every bit as serious as the numerous posts on the internet have indicated. It is gut  wrenching.
      It is unfortunate indeed that after nearly two decades of effort, organized, handsomely paid, professional advocates who are not themselves disabled and who have ample resources to lobby Congress, and who represent themselves as advocates for people with "CFS" have failed to devise effective lobbying strategies that might actually change the status quo for a body of Americans so disabled they are costing the nation at least $9 billion a year in lost productivity. Furiously lobbying for yet more money for federal agencies that have, so far, primarily served to harm patients helps no one. The fact that a standing grant review committee does not yet exist at NIH, in my opinion, reflects one of the most serious strategic failures of these professional lobbyists.
      If Congress had the will to do so, for instance, it could force the NIH to create a standing committee. The problem would then become insuring that NIH chose bona fide experts - perhaps the second phase of the struggle. Currently, the vast majority of members of Congress do not understand there is a problem. The problem needs to be explained to them. The problem needs to be explained particularly to the highest ranking members of the Senate and House committees that apportion money to the NIH.
      Several doctors and scientists testified before Congress on behalf of patients in the mid-to-late 1980s and early 1990s seeking the establishment of a permanent review committee for "CFS" grants. Experienced grant seekers, they knew as well as anyone at NIH the myriad pit-falls of ad hoc committees. They asked, as well, that the members of this permanent committee be required to have demonstrated expertise in the field. That their requests failed to result in the establishment of a permanent committee of experts is probably not their fault. Their failure is more of an indicator of the NIH's long-standing hostility to this disease. It's within the realm of possibility, though not a given, that if those professional patient advocates with financial resources and access to Congress had organized their strategy around this singularly critical issue and supported these doctors and scientists who were willing to go to Washington to make such pleas, a permanent committee of experts might have been established by now. This is not to say the option is moot; there is always room for optimism, but it won't happen without a struggle.
      In contrast, an enormous amount of energy belonging to patients who have few resources, who are sick, who are not professional lobbyists, and who cannot commute to Washington, D.C., has been consumed since 1987 in an effort to change the name "chronic fatigue syndrome" to a scientific name. That fight is probably not over, but for the moment, the good guys appear to have lost the war. Maybe it's time to launch a war over a  long-ignored but possibly even more important matter: the creation of a standing or permanent review committee for "CFS" grants, one whose members are bona fide experts in the field, at the NIH.
 When the science can no longer be manipulated, ignored, or buried by
 propagandists, I suspect the name will change, petition or no petition.

[Ed. Note: The names and specialties of the ad hoc grant review committee members for the NIH were put online in late December.  Hillary added the following about the committee:]

Not counting the chair, it appears there are 24 members on this committee. Seven are either psychiatrists or psychologists. (Gudrun Lange's expertise is psychology.) Another is a Ph.D from the Rand Corporation "think tank," and another is an occupational therapist. Obviously, these nine constitute one-third of the grant review committee, excluding the chair.
On the eve of a new year, I cannot help but contemplate this composition and wonder what exactly has changed since 1986. Once again I advocate: The NIH does not deserve your energy or time, but certain members of Congress with oversight over the NIH might be interested to know about the composition of this committee, given the scientific advances in this disease in the last twenty years. Further, a disease that is costing the nation more than $9.1 billion dollars in lost productivity, a figure that exceeds the annual profits of Wal-Mart, deserves a permanent or standing committee of renowned experts in the field.

[Ed. Note: This ad hoc committee does have one "CFS specialist", James F. Jones, M.D. who now works for the CDC.  I remember when Jones, a pediatrician, had many children coming to him who had CFIDS/ME.  At an AACFS conference years ago, he advocated "tough love" to get these children to cooperate and begin to improve!  Did the CDC reward him for his viewpoint?]

The committee looked at the grant applications in late January and found some of the 29 grant proposals worthy of a high score and will refer these to other institutes for their judgment.  The funding will not be announced until May and the actual funding will not occur until September, a full year after the deadline of the proposal grants.
 We hope many members will bring the information in this article to the attention of their federal senators and representatives. Hillary Johnson is the author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.] 


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