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Women and Children of CFIDS
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Co-Cure Archives
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Subject: ACT: NIH grant reviews
>>From Hillary Johnson:


To all,

All major diseases and most minor diseases at the NIH 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 post 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 Co-Cure. 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 Co-Cure 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.

Hillary Johnson

~

Enjoy the sunsets and sunrises,

Diana Saba
Retired Nurse
FM ME/CFIDS
Related Neurological Disorders
CDC's Wm Reeves Must Go
Bring Back the GAO
Where did over 4 Million $'s of misappropriated funds go to?

Please Support NCF's Research Plans
http://www.ncf-net.org/

Please Sign Petitions
http://www.petitiononline.com/MEitis/petition.html
http://www.petitiononline.com.cfs2004/

May 12th Awareness Day
http://www.geocities.com/capitolhill/4277/

The One Campaign
http://www.one.org/

The HHV-6 Site
http://hhv6.freeservers.com/

Betrayal By the Brain:
The neurological basis of chronic fatigue syndrome, fibromyalgia
syndrome and related neural network disorders.
by Dr. Jay A Goldstein
http://home.vicnet.net.au/~mecfs/general/goldstein_summary.html

CFSAC Meeting Presentation ~ June 21, 2004
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0407a&L=co-cure&F=&S=&P=541

~*I truly hope the January 2006 CFSAC meeting will be addressing our
continued efforts and concerns about our nations blood supply and FM
ME/CFIDS and all related neurological disorders*~

Reading, Researching, Posting to AMF
1997-2005http://hometown.aol.com/dgsaba/myhomepage/profile.html

Type AMF Abusers into the google search engine box.
http://groups.google.com/group/alt.med.fibromyalgia/search?q=AMF+Abus...

"What lies behind us and what lies before us, are tiny matters,
compared to what lies within us" ~ Ralph Waldo Emerson

.

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