The Massachusetts CFIDS Association sent out this alert that the Senate Appropriations Committee has completely eliminated funding for CFS research at the CDC. Email links and text that can be copied and pasted are included in their post, copied below.
I found it easiest to copy the Subject heading into each email as I opened its link, then to copy the body of the text into each email (with appropriate edits), and send them off.
I also sent the one to Elizabeth Warren, even though I'm not a Mass. constituent, because she's on an appropriate related committee, and can be a strong and fierce advocate!
It took me less than 1 minute to do all of that (although I spent more time on it because I researched the background a bit and added some to my letter).
Here's the info from Mass CFIDS, and here's the link to their website in case the copied links below don't work: http://www.masscfids.org/advocacy/583-restore-funding-for-cdcs-mecfs-research
Massachusetts CFIDS/ME & FM Association News
Restore CDC Funding!
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@appro.senate.gov
Chol_pak@appro.senate.gov
Alex_Keenan@appro.senate.gov
Lisa_bernhardt@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: http://www.warren.senate.gov/?p=email_senator.
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 (you can copy this text right from this web page); 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]
I found it easiest to copy the Subject heading into each email as I opened its link, then to copy the body of the text into each email (with appropriate edits), and send them off.
I also sent the one to Elizabeth Warren, even though I'm not a Mass. constituent, because she's on an appropriate related committee, and can be a strong and fierce advocate!
It took me less than 1 minute to do all of that (although I spent more time on it because I researched the background a bit and added some to my letter).
Here's the info from Mass CFIDS, and here's the link to their website in case the copied links below don't work: http://www.masscfids.org/advocacy/583-restore-funding-for-cdcs-mecfs-research
Massachusetts CFIDS/ME & FM Association News
Restore CDC Funding!
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@appro.senate.gov
Chol_pak@appro.senate.gov
Alex_Keenan@appro.senate.gov
Lisa_bernhardt@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: http://www.warren.senate.gov/?p=email_senator.
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 (you can copy this text right from this web page); 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]
I was just pointing it out so people didn't miss the other thread.
