CFS Advisory Committee Meeting Report for September 12, 2005

[Guest guest]

Note: The exhaustion of " payback " referred to below is the return of funds

ripped off from CFS research under then-Director Jeff Koplan, as mandated

through Congress.

Dr. Bell - Chairman of the below committee, was the physician involved in

the " cluster outbreak " that occurred at the same time as Incline Village. He did

call CDC multiple times, but they failed and refused to respond to his calls for

help. Bell, located on a large body of water in upstate NY, still doesn't know

why his office filles to overflowing every November. Although a strong and

sympathetic supporter of CFS patients, Bell still apparently doesn't get the

mold connection.

******************************************************************

http://www.cfids.org/advocacy/2005/gac_09142005.asp

Advocacy Archives: Advocacy Alert

CFS Advisory Committee Meeting Report for September 12, 2005

Advocacy Alert: 09/14/2005

The CFS Advisory Committee to the Department of Health and Human Services (DHHS)

met on Monday, September 12, 2005 to hear reports from federal agencies, review

past recommendations and consider new ones and to receive testimony from members

of the public. Chairman Bell presided over the meeting. Dr. Zucker,

the committee’s executive secretary for DHHS, was unable to attend in person due

to a family emergency. Jarman of DHHS’s Office of Public Health and Science

filled this role, helping guide the agenda and offering technical clarifications

throughout the day.

In his opening comments, Dr. Bell announced that this would be his last

committee meeting, with his term ending along with the terms of five fellow

committee members. He conveyed information from Dr. Zucker that six individuals

nominated by members of the public had been selected and submitted to Secretary

Mike Leavitt’s office for approval. Mr. Jarman noted that it was premature to

release these individuals’ names.

Although Dr. Zucker had planned to address the committee by telephone

conferencing, the connection was not available and Dr. Bell moved to agency

updates while technicians worked to make the connection. Dr. Bill

provided some background on the Health Resources and Services Administration’s

activities. A report on the Centers for Disease Control and Prevention (CDC) CFS

program, emphasizing education efforts, was provided by Dr. Reeves. He

also responded to numerous questions from committee members about current

research activities. Before the first session of public witnesses, Dr. Zucker

was able to address the committee, noting that a formal response to the

committee’s list of 11 recommendations, submitted on August 23, 2004, had not

been issued. However, Dr. Zucker committed to moving the recommendations

forward, even while they waited for such a response. Dr. Zucker also commented

that the ex-officio members would address specific recommendations as they made

their reports. Before breaking for lunch Dr. Bell invited three public

witnesses – Dr. Schweitzer , Dr. Beverly Bugos and Marla (McKibben)

Silverman -- to present their testimony.

The meeting resumed with agency reports from Dr. Marc Cavaille-Coll (Food and

Drug Administration), Dr. Eleanor Hanna (National Institutes of Health) and Dr.

ce Desi (Social Security Administration). Patient organization

representatives K. McCleary (The CFIDS Association of America) and

Sterling (NJ CFS Association) were invited to address the committee.

The committee then dedicated time to a discussion of the information heard

throughout the day, the status of earlier recommendations and the possibility of

making new recommendations to the Secretary. Three were formulated, passed and

prepared for transmittal:

Since Fiscal Year 2000, the CDC CFS program has benefited from additional

funding to support epidemiologic, clinical and basic lab studies that have

yielded numerous publications and advances in the understanding of CFS. These

are consistent with the recommendations of this committee made on August 23,

2004. The $12.9 million in scientific emphasis (“payback”) funds will be

exhausted as of September 30, 2005. The committee recommends that in order to

sustain this crucial progress and scientific momentum that the CDC CFS program

receive funding for FY06 and beyond that is at least equal to FY05 levels.

The Committee also recommends the following: to expedite the conduct of CDC

epidemiology studies of CFS, should it be possible, Office of Management and

Budget review and approval of instruments to be used in these studies would be

expedited or eliminated.

The Committee recommends that it meet in January with the current membership

if new members have not been appointed by that time.

Three more public witnesses, Barbara Brodsky, Debora Oppenheim and

Artman made presentations to the committee. After a round of thanks between

committee members, the ex-officio representatives and Mr. Jarman, the meeting

was adjourned.

New information conveyed during agency reports:

Materials about CFS will be distributed to health care providers working in

community health centers around the country (HRSA)

Clearance required under the Paperwork Reduction Act for epidemiology studies

will create 4 to 6-month delays in field research (CDC) (Note: See the

committee’s second recommendation issued during the meeting)

CDC will pilot a patient registry in Georgia , involving a wide range of

traditional and complementary health care providers to refer patients

The CDC research program funds stand to drop by 60% for the fiscal year that

begins on Oct. 1, 2005. (Note: See the first recommendation issued by the

committee)

NIH has received thousands of letters and e-mails from the public about CFS

and numerous letters from members of Congress

The Request for Applications issued in July has generated 37 letters of

intent from researchers, many of whom are new to the field of CFS. Full

applications are due on September 19. (NIH)

The Office of Research on Women’s Health continues to update and upgrade its

new CFS web site (NIH) (See http://orwh.od.nih.gov/cfs.html)

An on-campus group of researchers working in integrative medicine will

examine CFS and other multisystem illness as they present across the lifespan

(NIH)

Adjudicators who make decisions on applications for Social Security

disability working at all levels of the review process will receive training on

CFS in October (SSA)

The approval rate for applicants diagnosed with CFS is about half – 20% – of

the rate for all claimants at the first stage of consideration (SSA)

* Members whose terms expire on September 30, 2005: Bell, M.D.,

, Gantz, M.D., Lapp, M.D., Lyle Lieberman, J.D., and

o Patarca, M.D. The charter allows for members’ terms to be extended for

up to 180 days if replacements have not been appointed.

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

---------------------------------

for Good

Click here to donate to the Hurricane Katrina relief effort.