The House and the Senate both have Appropriations Committees that have made specific funding recommendations for all government programs. In a stunning move, the Senate committee has recommended cutting all funding (what little we had) for ME/CFS.
These are just preliminary recommendations that still have to be voted on by both houses of Congress, but it's an alarming proposal for the 1 - 2 million adults in the U.S. with ME/CFS/SEID (not to mention the uncounted children and teens). The process is all very complicated (as is everything in the government), but as usual, Jennie at Occupy CFS explains it clearly and lays out exactly what has happened and what happens next.
ME/CFS has been SEVERELY underfunded to begin with, with only $5 million total designated by the CDC, which amounts to only $5 per patient.
Jennie makes the point that that measly $5 million has been poorly spent in the past on efforts to encourage the use of GET and CBT as "treatments" and the CDC's misguided Toolbox and that the CDC has not done much for us anyway. You can read her full opinion at that link above (which I fully respect - she is an amazing advocate!).
On the other hand, I believe that removing ME/CFS completely from the budget sends a dangerous message, that our illness is trivial and doesn't need any funding.
Solve ME/CFS agrees and believes we should send letters to key members of the Senate, asking them to reinstate ME/CFS funding. They have provided a link here for an easy-to-download letter that can be customized to describe your experiences and e-mailed. The whole process only takes a couple of minutes. Time is short, so if you want to ask the Senate to not stop funding ME/CFS, then you should go to that link and send your letters right away.
While you are at it, there are some other advocacy efforts you can make from your couch or bed. Jennie lists several upcoming opportunities to have your voice heard, including public comment at this month's CFSAC meeting, a petition to sign, and other opportunities. All have deadlines quickly approaching, so head over there now to help.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
1 comment:
Please read my blog The Median of Infinity. It is a chronicle of my journey through CFS/Adrenal Fatigue. You will find that there IS a theory and highly effective treatment for these very difficult and debilitating illnesses. I am always so sorry to hear that people remain ill for lifetimes, waiting for a "cure" ...and always discouraged when those of us who suffer so much feel the need to lobby congress...I personally don't think this is the way to go, but kudos to those who put so much effort into that aspect of trying to find a cause and cure... my goal in writing my blog is to let others know that they CAN recover their health...there IS an effective treatment.
Post a Comment