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
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,
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
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
[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