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The VT CFIDS Assoc, Inc.


Congressman Bernard Sanders

1 Church St. 2nd Floor,
Burlington, VT 05401
Phone - 802-862-0697
In-State 800-339-9834
Fax - 802-860-6370

167 Main Street, Suite 410
Brattleboro, VT 05301
Phone - 802-254-8732
Fax - 802-254-9207

2233 Rayburn H.O.B.,
Washington DC 20515
Phone - 202-225-4115
Fax - 202-225-6790

Contact Congessman Sanders


Senator Jim Jeffords

30 Main Street
Suite 350
Burlington, VT 05401
(802) 658-6001
(800) 835-5500 (Only in Vermont)

453 Stone Cutters Way
Suite 1
Montpelier, VT 05602
(802) 223-5273
(800) 835-5500 (Only in Vermont)

Lindholm Office Building
2 South Main Street
Rutland, VT 05701
(802) 773-3875
(800) 835-5500 (Only in Vermont)

413 Dirksen Senate Office Building
Washington, D.C. 20510
(202) 224-5141

Contact Senator Jeffords


Senator Patrick Leahy

199 Main Street, 4th Floor
Burlington, VT 05401
(802) 863-2525
1-800-642-3193

P.O. Box 933
87 State Street, Room 338
Montpelier, VT 05602
(802) 229-0569

433 Russell Senate Office Bldg
(at Constitution and Delaware)
United States Senate
Washington, DC 20510
(202) 224-4242

Contact Senator Leahy

December 11, 2005

The most powerful political document is the hand written letter from a constituent to a representative.

I have received the following from Kenneth Friedman PhD., and it details a more difficult turn of events in regards to the CFSAC and the NIH.

Please write our Federal Delegation.
A sample letter is below, their addresses on the left.     Thank you.

 

Hi Rik!
Per this morning's telephone conversation, I have a received a letter of
Dr. Howard Zucker, Executive Secretary of the U.S. Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee. The letter conveys his resignation from Health and Human Services for work with the World Health Organization.
His resignation, in my opinion, could not possibly come at a worse time.
Half of the members of the CFSAC were rotated off of the Committee in
September. Those of us who remain on the Committee for one more year have not been informed as to who will be the new members. To my knowledge, a new Chairman of the Committee has not been appointed. With no Chairman, and no Executive Secretary (who represents the Department of Health and Human Services on the Committee and serves to guide the Committee through the maize of Federal offices and regulations), I fear the Committee is in disarray and will not meet at its scheduled time in January, 2006.
The CFSAC formulated (11) recommendations at the end of its first year of operation. At the end of its second year of operation, those
recommendations had not been acted upon. Many federal Congressman sent a letter to the U.S. Secretary of Health urging action be taken on those recommendations. There has been no response.
All patients with CFS and related illnesses should be concerned by these events. The CFSAC spoke and speaks at the federal level with one lucid voice for research, education and patient care of CFS patients. Such an opportunity may never occur again.
Can we save the momentum generated by the CFSAC?
We have a short window of opportunity to do so. Federal Congressman and Senators will soon be on holiday and returning to their districts and
states. We must aprize them of this unfortunate situation and ask them to assist us in continuing the work of the CFSAC and obtaining responses from the U.S. Secretary of Health to the priority issues established by the CFSAC now more than one year ago.
I look forward with working with you and all interested parties.

Sincerely,
Kenneth J. Friedman, Ph.D.
Research Associate, Green Mountain College
Associate Professor of Pharmacology and Physiology, N.J. Medical School
Member, Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Member, Education Subcommittee of the CFSAC
Member, Research Subcommitte of the CFSAC


The Honorable,...

Dear,.....

I live in Vermont and my life and the lives of my family and friends is deeply affected by Chronic Fatigue Syndrome.
I am deeply concerned about the status of the eleven recommendations made to The National Institutes of Health by the U.S. Department of Health & Human Services Chronic Fatigue Syndrome Advisory Committee. Please, on my behalf, encourage the NIH to act immediately on their recommendations and advise me of your results. Thank you.

Sincerely,...