• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Impact of proposed NIH and CDC cuts on ME Research - and tips on advocacy

A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
News organizations recently reported that President Donald Trump’s administration has asked the House and Senate to approve budget cuts for 2017 of $1.232 billion for the National Institutes of Health (NIH) and $314 million for the Centers for Disease Control and Prevention (CDC). What do the proposed cuts to NIH and CDC mean for Myalgic Encephalomyelitis (ME)* research?

The CDC “Chronic Fatigue Syndrome” program was mentioned specifically in the March 23rd White House budget proposal for 2017 that was obtained by Politico. The proposal says that CDC Public Health Program cuts “would eliminate or reduce less effective or duplicative research and disease-specific programs such as the Prevention Research Centers, Chronic Fatigue Syndrome, Cancer Registries, Prion Disease, Injury Control Research Centers, Climate Change, and Tobacco Prevention Research.”

The fiscal year for the government starts on October 1st of the previous year, so the 2017 fiscal year (FY17) goes from Oct. 1, 2016 – Sept. 30, 2017. For this fiscal year, NIH, CDC and other federal agencies have been operating on a “continuing resolution,” keeping 2017 spending at 2016 amounts. The continuing resolution will expire on April 28, by which time Congress will either have to extend the continuing resolution, pass a 2017 budget or shut down the government.

The White House budget proposal is not expected to pass as-is, based on comments from both Republicans and Democrats in Congress, but if a 2017 budget is passed, it still could include some of the cuts requested by the White House. These may or may not include the elimination of the CDC “Chronic Fatigue Syndrome” program (which has a budget of $5.4 million a year) and general cuts to the NIH.
Click to expand...
http://www.meaction.net/2017/04/10/impact-of-proposed-nih-and-cdc-cuts-on-me-research/

Advocacy tips section
What can you do?

The most important action is to reach out to your own members of Congress and educate them about the impact of the disease and the strong need for serious biomedical research. You can call or email your local or district offices to express your concern or set up a meeting. Also, many members of Congress attend town halls in their home districts, which can be a perfect time for you or a family member to ask your member of Congress to be a champion for ME. For ideas on questions you can ask, you can watch a video of Rivka Solomon asking her Senator, Ed Markey, to help ME patients at a recent town hall meeting. Click here for tips on speaking at town hall meetings. If you want to get involved or have questions please contact us at congress@meaction.net.
Click to expand...
 
Emily Taylor

Emily Taylor

Senior Member
Messages
149
Location
Los Angeles, CA
Hi Anne -

I'm so pleased that you tagged me. Sometimes, I get so busy with all the work here at Solve ME/CFS Initiative that I forget to check PR. We do our best to send updates frequently on our research and advocacy work in our e-mail newsletters - but I am very glad you reached out and asked directly.

I'm afraid the answer is... complicated. But I am happy to share what I have learned through many congressional meetings and contacts.

CDC - definitely under threat. The CDC receives money from many avenues. Currently, the only ME/CFS specific funding in the federal appropriations process goes to the CDC. As long as that line item stays funded (and we worked very hard to make sure it does!), the CDC will continue to receive about $5.4m per year for ME/CFS related work. That being said - the CDC overall is facing very steep cuts by the elimination of the Prevention and Public Health Fund (PPHF) and we've heard rumors that a number of programs are facing elimination and restructuring. We cannot say for sure whether or not ME/CFS will be one of those programs. We have strong advocates for our work within the CDC and they have assured us the multi-site study is not threatened this year. At this time, not a single budget bill for FY 18 has been released - so we cannot confirm that.

NIH - unlikely threat. The NIH enjoys more bi-partisan support than nearly any other agency. Chairman Tom Cole, the man who controls the budget for NIH, said its programs are "are every bit as important for the national defense and national security of the American people as the Pentagon." Every staff member and committee staff member from both sides of the aisle that I have spoken with affirms that any proposed cuts to NIH will be fought and voted down. I was on a conference call with a key majority staffer for Chairman Cole's committee and she confirmed that the NIH cuts would be fought from both sides.

Again, to reiterate, there has still not been a single budget bill released for FY 18, so we will have to wait for real legislation before we know for sure.

Hope this helps!

Anne said:
I've just checked in on this thread as well as this one: http://forums.phoenixrising.me/inde...onic-fatigue-syndrome-funding-for-cuts.50384/

- very curious: where do things stand now?

With the proposed CDC cut? (to zero for ME/CFS)

And with the proposed NIH cuts?

@Emily Taylor , can you fill us in? @JenB ?

(PS. THANK YOU for your work!)

Tagging @mango FYI
Click to expand...
 
A

Anne

Senior Member
Messages
295
Emily Taylor said:
CDC - definitely under threat. The CDC receives money from many avenues. Currently, the only ME/CFS specific funding in the federal appropriations process goes to the CDC. As long as that line item stays funded (and we worked very hard to make sure it does!), the CDC will continue to receive about $5.4m per year for ME/CFS related work. That being said - the CDC overall is facing very steep cuts by the elimination of the Prevention and Public Health Fund (PPHF) and we've heard rumors that a number of programs are facing elimination and restructuring. We cannot say for sure whether or not ME/CFS will be one of those programs. We have strong advocates for our work within the CDC and they have assured us the multi-site study is not threatened this year. At this time, not a single budget bill for FY 18 has been released - so we cannot confirm that.
Click to expand...

It seems @Emily Taylor was right and the CDC ME/CFS budget is now under immediate threat - again.

From SMCI:

Take action! Restore ME/CFS Funding now!
Last week, the House Appropriations Subcommittee on Labor-HHS finally released their vision of federal spending for Fiscal Year 2018 in H.R. 3358. We are disheartened to share that the accompanying committee report, again, zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC’s Center for Emerging and Zoonotic Infectious Diseases. Now, we turn to the Senate to restore the funding for these critical research, education, and awareness programs.

To push back against this reduction, we’ve made it very easy. Send a message to your members of congress.

SMCI asks all US ME patients to take action:
https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00009&cid=
 
You must log in or register to reply here.