The following report on the Nov. 17. 1993 meeting of the U.S. Interagency
Coordinating Committee was published in CFS-NEWS no. 27.
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The U.S. Interagency Coordinating Committee for CFS (ICC-CFS)

The ICC-CFS met on Wednesday, Nov. 17 and was chaired by Dr. Philip
Lee, M.D., the U.S. Assistant Secretary for Health.  This committee,
which had met quietly many times before, had at this meeting many
patient representatives in attendance as official testifiers.  The
chairmanship of Dr. Lee was much looked forward to by many patient
advocates since Dr. Lee is known to have a personal familiarity with
CFS issues, based on his work in public health policy in the San
Francisco Bay area before his recent appointment as U.S. Assistant
Secretary.  Dr. Lee has also been known for being highly
credentialled in general regarding health administration matters.  He
had previously served as Assistant Secretary for Health and
Scientific Affairs from 1965 to 1967 under President Lyndon Johnson
and has held numerous other noted posts.  Some patient leaders
speculated before the meeting as to whether Dr. Lee was "on the side"
of the patients or of the official bureaucrats.

At the ICC meeting, Dr. William Reeves of CDC commented on the draft
information booklet.  He reported that many constructive comments had
been received on the draft and had been incorporated into a revision.
The revised booklet was now being submitted for administrative
approval and might be ready for publication as soon as January.  Most
patient representatives, notably Kendra Dayger (author and science
researcher), repeated their detailed criticism of the booklet and
their demand that it be withdrawn or re-written.  Ms. Dayger said
that government pamphlets too typically referred patients to doctors
for CFS treatments but offered no advice to doctors on how to manage
the illness.  She also criticized the standard prominent reference to
mental illness in such pamphlets and how that reference strongly
undercuts such pamphlets' usefulness in employment matters and in
gaining a medical diagnosis.  However, Judy Basso of the Minnesota
CFS Assoc. and patient Laura Frazier of Missouri stated that it was
prudent to include such references as being needed for medical
caution in diagnosis, and they praised the government's work on CFS
in general.  At the end of the meeting, Dr. Lee stated that the
current booklet would proceed, but that the latest revision would be
re-circulated for further public comment.

Tom Hennessy of the RESCIND advocacy group testified about the
societal cost/benefit advantage of emphasizing CFS research in that
the sooner an effective treatment may be found, the sooner that
disabled patients can return to being productive, income-generating
and tax-generating members of society.  Mr. Hennessy also spoke of
about the strong need to change the name of the illness.  It was time
to drop "the 'F' word" (i.e., fatigue).  In response, CDC officials
and Dr. Lee stated that it was premature to change the name without a
further research breakthrough to help more clearly define the
illness, and Dr. Lee suggested that whatever credibility CFS had
achieved so far was now associated with that name, and so credibility
might be hurt by inviting confusion through a name change.

Hennessy continued and said that the word "fatigue" had done so much
to trivialize the illness and undermine the credibility of patients,
therefore the need for change far outweighed any imagined loss.  He
declared that if there need be only one decision that was to come out
of the day's meeting, it should be that the name "chronic fatigue
syndrome" must be changed.  To further underscore his point, Mr.
Hennessy made a frenetic but poignant offer.  He fervently declared
that if it would help to prompt a name change, he would ask to donate
his body to science immediately, right that afternoon, so that any
doubting researchers in attendance might examine his brain for the
anatomic holes that had been reported in medical literature -- this
to help confirm for those present that CFS genuinely has an organic
basis and so should not be trivialized by being so strongly
associated with the inadequate word "fatigue".  He repeated that he
would rather die than see the current name remain unchanged.
Although the officials in attendance did not make an immediate
comment, clearly everyone in the room was impressed by this
impassioned testimony.

Bonnie Gorman of the Massachusetts CFIDS Association made several
points, regarding: the need to remember the children and adolescents
who have the illness but who are not accounted for in the current
case definition discussion nor in other government policies; the
strong need for educating the public at large and the clinicians; and
the need to develop a clinical case definition.  She made several
innovative suggestions for education, and made other recommendations
for improving Social Security policy.

Melinda Paras, representing the CFIDS Foundation based in San
Francisco, gave impressive testimony.  She noted that, up until now,
representatives of the patient community had barely been included at
the decision-making level of any government policies regarding CFS,
and that it's quite important that this exclusion end.  The process
of revising the CFS definition was a case in point, wherein research
needs were unnecessarily pitted against patients' needs.  Ms. Paras
criticized the image of CFS being a "white woman's" illness, as
implied by current government reports.  And she stated that the
meetings of the ICC should be "agendized", that is, should be geared
towards developing a plan of action for the government, rather than
being a time for mere "update reports" on various agencies'
activities.

Kim Kenney, the executive director of CFIDS America, pointed out
legal issues regarding the nature of the current ICC panel which, in
the Association's view, should *formally* include representatives
from the patient and private medical researcher communities, as
mandated by recent Congressional action.  She then recounted CFIDS
America's current recommended plan for action, including the need
for: NIH funds dedicated to finding a clear marker for CFS; broader
prevalence studies by the CDC; and a formal program to sensitize
Social Security Administration (SSA) field representatives to CFS
issues; and other SSA matters.

Dr. John Renner, M.D. represented the newly renamed National Chronic
Fatigue Syndrome and Fibromyalgia Association, based in Kansas City.
Among his comments was a caution that the definition of CFS should
not be expanded so broadly so as to include other syndromes such as
multiple chemical sensitivities or Gulf War disease, since including
these currently ill-defined entities could only dilute whatever
hard-won credibility that CFS has achieved so far.

At the meeting's end, Dr. Lee stated that the next meeting should
include the topics of: the clinical *and* research definitions;
pediatric issues; medical and public education; further review for
the CDC booklet; various Social Security issues; and the development
of a government action plan for CFS.  The next meeting should be held
sometime in February on a specific date to be set later.