Date sent:      	Mon, 16 Sep 2002 
From:           	Jill McLaughlin <amclaughlin1@ATTBI.COM>


Regarding the CFSCC and the formation of the Advisory Committee: There have
been some questions regarding the Advisory Committee and the CFSCC, since
some have found the language and descriptions to be confusing.

We have been told by senior people at DHHS, in spite of the terms
"restructuring" and "transition," that the advisory committee is considered
to be new committee, i.e., one entity is being replaced by another. The
CFSCC was not in compliance with the Federal Advisory Committee Act (FACA)
guidelines, and simultaneously was under the Department-wide review along
with all other DHHS Advisory Committees, so a new Charter is being written.
And it was confirmed that "new Charter"= "new Committee" (in fact, the CFSCC
Charter has just expired, so none of the previous CFSCC members will be
grandfathered in or automatically become members of the new Committee, etc.)

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 advisory 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, at least until the Charter ran out
this September (2002). The CFSCC was not in any way abolished or terminated
by the new administration, as everyone had presumed had eventually happened,
and 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, there seemed to have been some deliberate intention to let it
go and blame it on the "new administration." Over time, terms of the
committee members expired and were never filled and eventually enough time
elapsed, the Charter ran out, and probably it was assumed that 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, at least, 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. 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  ).
And there were no subsequent mentions of any further meetings - even
before the September 11 attacks.

Some patients have understandably been 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 eventually 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 remained active and these problems were not
necessarily insurmountable. So the real question is why was this allowed to
happen in the first place.

In fact, not until we started raising the issue of the status of the
CFSCC/new advisory committee did the CAA respond or seem to show any public
inclination of any awareness of it. It should not have been up
to us to keep addressing and bringing up these issues, since it was CAA who,
historically, occupied two of the patient representative positions on the
CFSCC (even though by last spring Kim Kenny's term had already expired).

However, we believe that 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
Executive Director
National CFIDS Foundation, Inc.
Needham MA 02492