Date sent:      	Tue, 25 Jun 2002 

CFS Advisory committee status


Many have expressed concerns over the situation of the status of the new
CFS advisory committee. We have been unable to get any official information
from DHHS regarding  the formation of the new advisory committee other than
vague "we're working on it." Also, this is still a relatively new
administration and still seems uncertain as to who is specifically
responsible or who is in the decision-making loop. It is not clear whether
DHHS has actually nailed this down as of yet, which may be part of the problem.

The CFIDS Association of America (CAA) has likewise expressed frustration
by the lack of information/action on the part of DHHS and has noted that
they were working to get the committee moving (via Congressional input,
among other things). 

[See: Subject: [CO-CURE] ACT: Statement about the CFSCC, May 21, 2002
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0205c&L=co-cure&F=&S=&P=5401]

In spite of any political differences, ensuring that this committee
move forward is in both of our respective organization's best interests and,
accordingly, we have been reminded that under the circumstances it could
be mutually advantageous to consider collaborating in this area to  keep
pressure on DHHS and to try to get some answers. We have contacted the
CAA to explore this possibility.

We believe that the patient community deserves to be adequately appraised of
the status and events surrounding the formation of this committee. We will
remain in contact with DHHS and will provide updates and information as it
becomes available, and also will further encourage DHHS to keep the patient
community informed.

Any questions, comments or suggestions can be sent to:
cfidsfoundation@aol.com

Jill McLaughlin
Executive Director
National CFIDS Foundation, Inc.
Needham, MA 02492