This special edition newsletter contains two items:
The funding for the CDC ME/CFS program has been cut to ZERO in the senate version of the budget appropriations bill. If this stands, a major research program (the “multi-site study”) is threatened. While most of the CDC disease areas are level-funded, under the Senate's version of the appropriations bill ME/CFS will receive NOTHING.
We have only a few days to get this reversed. When the senators return from their August vacation, the appropriations bill will go to conference committee, where, with enough support, the funding can be restored. WE NEED TO MAKE THIS HAPPEN.
We need to flood the in-boxes of the four staffers who work on this bill:
Laura_friedel-at-appro.senate.gov
Chol_pak-at-appro.senate.gov
Alex_Keenan-at-appro.senate.go
Lisa_bernhardt-at-appro.senate.gov
If you live in Massachusetts, please send a copy of your letter to Sen. Elizabeth Warren, who is a member of the Senate Committee on Health, Education, Labor, and Pensions, using this form: Email Senator Warren
Your note can be brief and simple. To make the most impact, use the subject line “Please restore CDC funding for Chronic Fatigue Syndrome”.
Here’s a sample letter; feel free to customize it!
Subject: Please restore CDC funding for Chronic Fatigue Syndrome
I understand that the Senate Appropriations Committee has recommended that funding for the CDC’s programs for Chronic Fatigue Syndrome be terminated as of 2016.
I am a patient (family member of a patient/caregiver for a patient) with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis or ME/CFS. The Institute of Medicine has just issued a major report on this “serious, chronic, complex, multisystem disease” citing the devastation on the lives of the 836,000 to 2.5 million Americans who suffer from this devastating disease, the $20 billion annual cost to society, and the enormous need for more research which can lead to better treatments and a cure. We need MORE money for research, medical education, and information for patients and their families, NOT a termination of support.
I urge you to reinstate the $5.4 million funding for the CDC/CFS programs immediately.
Sincerely,
[Your name]
[Your email address]
[Your USPS Address]
The CFSAC meeting will be held on Tuesday, August 18, 2015, from 9:00 a.m. until 5:00 p.m., ET and Wednesday, August 19, 2015, from 9:00 a.m. until 5:00 p.m., ET. It will be held at the Department of Health and Human Services, Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Room 800, Washington, D.C. 20201. If you wish to attend the meeting in person, you must register in advance. A registration form is available from the CFSAC website (http://www.hhs.gov/advcomcfs/), and should be emailed to This email address is being protected from spambots. You need JavaScript enabled to view it.This email address is being protected from spambots. You need JavaScript enabled to view it.;
The meeting will be live-video streamed. Listening-only via telephone will be available on both days. Live Streaming and call-in information will be posted on the CFSAC website by August 17, 2015.
The agenda for this meeting is being developed and will be posted on the CFSAC website, http://www.hhs.gov/advcomcfs/ when finalized. A major agenda item is expected to be the IOM/P2P Working Group’s recommendations to the full CFSAC (which in turn will make recommendations to the Assistant Secretary of Health). MassCFIDS will be there.
Public comment may be provided in person or by telephone. Individuals wishing to provide public comment in-person or via phone will be required to request time for public comment by Tuesday, August 11, 2015 at the following link: This email address is being protected from spambots. You need JavaScript enabled to view it.This email address is being protected from spambots. You need JavaScript enabled to view it.;
Individuals wishing to submit written comment for the public record should send an electronic copy of their written testimony to: This email address is being protected from spambots. You need JavaScript enabled to view it.This email address is being protected from spambots. You need JavaScript enabled to view it.;