Tell Your Representative to SUPPORT INCREASED FUNDING FOR POST-VIRAL-DISEASE RESEARCH INTO ME/CFS!

[rvallee]

"URGENT ACTION ALERT: SUPPORT A FUNDING INCREASE FOR ME/CFS!
We need YOU to contact your Senators. Your voice makes all the difference.

Our champion, Senator Markey, is leading two requests which, if approved, can increase funding for ME/CFS research and education! These requests would bring the total ME/CFS program funding level at CDC to $15.4 million (a 300% increase in program related funding!) and ensure ME/CFS continues in the critical Department of Defense Peer-Reviewed Medical Research Program, which provided over $500,000 to ME/CFS researchers last year.

Please contact your Senators ASAP and ask them to support these efforts."

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00143

I still haven't seen any work coming out of the CDC in the last several years that even amounts to $100K. I'm not sure that's a good idea without there being oversight on what they do with it, which appears to be nothing. The only work products I have seen in the last 5 years are a small update to their guidelines and the horrible evidence review that basically sets everything back 5 years. The NICE committee did a better job thanks and only thanks to the presence of patient experts who could uphold the process.

The committee needs to be brought back. Nothing is holding them accountable right now, the community discussions are a joke, they do not allow for any oversight at all and the patients are the only ones even attempting to. Blank checks won't cut it, they need to be told what to do with it, they clearly can't figure that out by themselves.

 

[Yessica]

"URGENT ACTION ALERT: SUPPORT A FUNDING INCREASE FOR ME/CFS!
We need YOU to contact your Senators. Your voice makes all the difference.

Our champion, Senator Markey, is leading two requests which, if approved, can increase funding for ME/CFS research and education! These requests would bring the total ME/CFS program funding level at CDC to $15.4 million (a 300% increase in program related funding!) and ensure ME/CFS continues in the critical Department of Defense Peer-Reviewed Medical Research Program, which provided over $500,000 to ME/CFS researchers last year.

Please contact your Senators ASAP and ask them to support these efforts."

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00143

Thanks that was very easy to do. Thank you for posting and Solve M.E. for making it so easy. And of course Senator Markey and everyone that advocated to make this possible!

 

[Wilhelmina Jenkins]

I still haven't seen any work coming out of the CDC in the last several years that even amounts to $100K. I'm not sure that's a good idea without there being oversight on what they do with it, which appears to be nothing.

Unless I am mistaken, the major ask for the increased funding is for a serious epidemiological study - something that we have needed for a very long time. CDC is very different from NIH. The usual with NIH is to appropriate a bulk amount of money and allow NIH to use it in whatever way they feel is appropriate. (There are exceptions for health crises like AIDS or COVID-19. Not us, so far.) With CDC, Congress directly says what the funds should be used for and they are the people who hold CDC responsible. CDC takes the words used by Congress seriously.

I think that it is unlikely that Congress will appropriate the funds this year, but I think that it is important that we continue to push for a decent epidemiological study and CDC would be the appropriate agency to do that.

And of course I agree with you that what has been accomplished by CDC for us has been disappointing, to say the least. I assume that this forum posted the letter from ME Action expressing that disappointment with CDC and NIH as well.

http://www.meaction.net/wp-content/uploads/2021/03/MEAction-Letter-to-NIH-CDC.pdf

 

[rvallee]

Unless I am mistaken, the major ask for the increased funding is for a serious epidemiological study - something that we have needed for a very long time. CDC is very different from NIH. The usual with NIH is to appropriate a bulk amount of money and allow NIH to use it in whatever way they feel is appropriate. (There are exceptions for health crises like AIDS or COVID-19. Not us, so far.) With CDC, Congress directly says what the funds should be used for and they are the people who hold CDC responsible. CDC takes the words used by Congress seriously.

I think that it is unlikely that Congress will appropriate the funds this year, but I think that it is important that we continue to push for a decent epidemiological study and CDC would be the appropriate agency to do that.

And of course I agree with you that what has been accomplished by CDC for us has been disappointing, to say the least. I assume that this forum posted the letter from ME Action expressing that disappointment with CDC and NIH as well.

http://www.meaction.net/wp-content/uploads/2021/03/MEAction-Letter-to-NIH-CDC.pdf

Ah OK that could be good. As long as there are clear instructions it should be put to good use. It's blank checks that are never accounted for that are problematic, or an annual budget no one knows how it's used, aside from the occasional community call.