NCF Advisory Committee Update 10-02

ADVISORY COMMITTEE UPDATE
By Jill McLaughlin

DHHS has approved the creation of a federal advisory committee for CFS and
is in the process of reviewing the Charter to ensure that it complies with
FACA regulations. There have been some questions, but this is indeed a new
Charter and is thus considered a new committee, rather than just a
"restructuring" of the CFSCC.

The formation of this committee was hampered by many factors: a change in
presidential administrations, it was caught in the midst of a department-
wide review of all DHHS committees, there was a cap on the total
number of advisory committees within the department which was imposed by the
Clinton administration, and the far-reaching circumstances surrounding the
September 11 attacks.

While there have been complaints about the hold up in the formation of the
new committee, the fact remains that there is no reason why the CFSCC could
not have continued and held meetings until such time as the advisory
committee was formally in place. It was confirmed by senior people at DHHS
who are connected with CFS issues, that the CFSCC Charter still exists and
is valid through September 5, 2002. The CFSCC was not in any way abolished
or terminated by the new administration, as everyone had assumed is what
eventually had happened, which in fact seemed to be the sideways impression
given by Donna Dean (and applauded by Kim Kenny) at the last CFSCC meeting
in Seattle.

In retrospect, those involved with the CFSCC seemed to deliberately want to
let it go and blame it on the "new administration." Over time, terms of the
committee members expired and were never filled and those involved most
undoubtedly assumed eventually enough time would elapse, the Charter would
run out, and all would be forgotten.

Overall, patients have been very upset at the 'disappearance' of the CFSCC,
given the assurances from this committee following the GAO report that it
would try to become more productive and responsive to patient concerns.
Although the GAO found that this committee essentially failed in its
mission, it still did provide a forum for some discussion and exchange of
information.

The CFSCC has not met since January, 2001, for reasons we have not been able
to ascertain, even though it had not been abolished or disbanded in any
official capacity. Indeed at that meeting there was talk of plans for a July
meeting in conjunction with the Name Change Workgroup, which never
materialized. As time was getting closer and no federal register notice had
been issued, we started inquiring and ultimately were told by Nancy Klimas
(who was not on the CFSCC at the time but was a member of the Name Change
Workgroup) at a local lecture that plans for a meeting had been dropped

(posted to Co-cure: http://listserv.nodak.edu/scripts/wa.exe?A2=ind0106D&L=co-cure&P=R533
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0106D&L=co-cure&P=R533 ).
And there were no subsequent mentions of any further meetings - even
before the September 11 attacks.

Some patients have been rightfully asking "where were our patient
representatives who were serving on the CFSCC in all of this?" Two patient
representative positions on the CFSCC were occupied by board members of the
CFIDS Association of America (CAA), yet the patient community was never
shown a hint of concern or attempt on their part to determine why this was
happening, or demonstrate even any awareness or acknowledgement of it
whatsoever. In fact, Jon Sterling, who was Co-Chair of the CFSCC (and
Chairman of the board of the CAA), was approached this spring by patients as
well as other CFSCC members, but was not interested in even trying to look
into the possibility of meeting or continuing.

Jon Sterling and Kim Kenny issued a public statement on May 21 via a C-ACT
message that it would be impossible to hold another CFSCC meeting due to
term expirations of nonfederal members and the fact that many of the federal
members had moved on to other assignments or jobs. Nonetheless, the CFSCC
charter remains active and these problems were not necessarily
insurmountable. So the real question is why was this allowed to happen in
the first place.

We were working closely with a staff member in Secretary Thompson's office,
who was very helpful in getting the committee approved and was very
forthcoming. (In fact, he told us that in conversations he had with CAA
representatives, they told him - or at least tried to convince him - point
blank they they were THE only patient group.) Unfortunately he left the
department, but there is a new person who is taking over his duties.

In fact, not until we started raising the issue of the status of the new
advisory committee did the CAA seem to show any public inclination of
following up or to even bring up the subject. It should not be up to us to
keep addressing and bringing up these issues, since it is the CAA who
occupies the patient representative positions on the committee.

However, we believe it is important that the patient community continue to
be informed regarding the set up of any new committee and what it will mean
in terms of structure, function and composition, particularly regarding the
selection of members. (In essence, to do whatever possible to ensure that
this new committee does not become an ineffective clone of the CFSCC and
then have to wait another 10 years for another GAO report.)

We will continue to follow the developments regarding the formation of this
committee and remain hopeful that this administration will provide the
leadership and direction to ensure future progress and to restore the trust
of the patient community.

Jill McLaughlin is the executive director of The National CFIDS Foundation, Inc.

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