US: Winning and Waiting: A Federal Funding Update for ME/CFS, Sept 2019

From an email from Solve ME/CFS Initiative


What you Need to Know:

• The Senate Appropriations Committee included our ME/CFS Advocacy Day request for Defense.
• If approved in the final budget, ME/CFS will be an eligible topic area for the Peer-Reviewed Medical Research Program (PRMRP), which is funded at $350 million next year.
• If the combined Senate and House bills pass, ME/CFS researchers could apply for up to $360 million in new defense research funding in FY 20.
• We are *still* waiting for the Senate committees to consider our other non-defense requests for ME/CFS funding.
• Take a moment to say “Thank you” to our Senate champions.
• Take your Advocacy to the next level with our easy step-by-step ADVOCACY GUIDE

Defense request: We won!
As part of ME/CFS Advocacy Day in April, we requested that ME/CFS be added to the Peer-Reviewed Medical Research Program (PRMRP). Our request was heard!

Last week, the Senate Appropriations Committee advanced its FY2020 Defense Funding Bill including full funding of the PRMRP at $350 million, despite the earlier House version of the legislation which eliminated the program. If the S. 2474 remains unchanged during the remainder of the budget process, next year ME/CFS will be an eligible research topic area in the PRMRP.

This is a very different outcome than our earlier update from the House in July. The House included excellent committee report language directing agencies to act on ME/CFS, yet did not increase the existing budget for ME/CFS. The also House decided to eliminate the PRMRP, but instead added ME/CFS into the “Combat Readiness” research program with $10 million of potential grant funding for ME/CFS researchers. If the House and Senate versions are combined in the final budget, ME/CFS researchers could apply for up to $360 million in new defense research funding in FY 20.


Labor-HHS request: We are still waiting.
As part of ME/CFS Advocacy Day in April, we also requested an increase to $9.9 million for ME/CFS programs at the Centers for Disease Control (CDC). The House did not accept this request and the Senate Appropriations Subcommittee continues to postpone hearings regarding Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS). These hearings will decide the fate of our $9.9m funding request. Currently, the Senate Appropriations Subcommittee has not scheduled a hearing date and many believe there will be a Continuing Resolution. If that occurs, ME/CFS will continue to be funded at $5.4m (the same level as FY19) in the Labor-HHS component of the federal budget.

While we continue to wait for news about Labor-HHS, the Defense bill now awaits action by the full Senate before the end of the fiscal year on September 30, 2019.

Add your name to our Congressional “Thank You” letter

This year has been record-breaking for ME/CFS with unprecedented response and mobilization from our representatives in Congress. SIXTY-THREE members of the House and Senate (11%!) signed our appropriations requests. As September 30 rapidly approaches, Solve ME is writing each of these members to thank them for supporting us during this year’s appropriations process.

If you’d like to join us, please add your name to our “Thank you!” letter using the button below.

 

Is it appropriate for people from overseas to also add their names to this letter?

Certainly it feels to me that America and now Canada are leading the world in attempts to develop a more enlightened and progressive approach to ME related health care. There may be a lot more that they can do, but at least they are moving forward.

 

If these funds would be coming from the Defense Department budget, would that mean that research would be limited to military members who had ME/CFS, somewhat like Nancy Klimas' Gulf War Illness research?

I suppose ME/CFS research could be attached to the DoD's GWI research program, as the symptoms are said to be virtually the same, though the dysfunctions which seem to produce those symptoms are apparently quite opposite in character.

I'd guess there's no reason to think that the prevalence of ME/CFS is any less in the military than in the general population (and is likely higher if physical stress is a factor). You would think the military, with all its record keeping, would have noticed that long ago, though.

According to this article:

Using Jason's prevalence rate, that would suggest about 40,000 ME/CFS cases among DoD military members, retirees, and their families alone (not counting the 861,000 civilian employees of the DoD, retirees and their families).

That figure would be somewhat skewed because Jason's prevalence applies only to adults. Even at half that, it would be at least 20,000 military members of the DoD (+ retirees and family members).


[ ETA: The Wikepeida page on Gulf War Syndrome says that Gulf War Veterans have a 1-4% increase in the prevalence rate of CFS over the "background." If you assume the background rate to be 0.422%, then an increase in that rate of 4% would increases the prevalence from 1-in-237 to 1-in-228. ]

 

Merged post

@Emily Taylor Is this "Peer-Reviewed Medical Research Program" the same as the "Congressional Directed Medical Research Program" or is this a separate program? I want to get excited but I'm not really sure what this means, and if it is the BIG goal you've been fighting for in DC from the beginning? What are the chances the ME/CFS wording gets removed from the bill before it is signed?

If approved would ME/CFS grant applications to this program have to include veterans / military personnel?

 

Hi Wigglethemouse,

The Congressional Directed Medical Research Program is the larger umbrella program within the Defense funding program and the "Peer-Reviewed Medical Research Program" is one program among many that is housed inside of it. You can learn more about the program here: https://cdmrp.army.mil/prmrp/default

I cannot speak to the potential studies or grant applications that we may see in this program, each investigator will design their studies differently. But, it is highly encouraged for awards through these programs to include veterans /military personnel, though not required.

 

Merged thread
Apologies this update is about 10 days old. It's been a super busy week.




Hold Please: A Federal Funding Update for ME/CFS
What you Need to Know:

• Final funding decisions have been postponed until November 21.
• House & Senate proposals contain 2 wins and 2 draws.
• If the combined Senate and House bills pass, ME/CFS researchers could apply for up to $360 million in new defense research funding in FY 20.
• We are will likely not see an increase to the CDC ME/CFS program next year.
• Take a moment to say “Thank you” to our Congressional funding request supporters!

Congress Postpones Final Budget Decisions
Today is the federal budget deadline and Congress passed legislation, known as a Continuing Resolution or “CR,” extending government funding to midnight November 21, 2019. This extension was signed by the President over the weekend. This means Congress has just over seven weeks to reach an agreement.

The Senate Appropriations Committee advanced its FY2020 Defense Funding Bill including full funding of the Peer Reviewed Medical Research Program (PRMRP) at $350 million. If the Senate proposal remains unchanged during the remainder of the budget process, next year ME/CFS will be an eligible research topic area in the PRMRP.

The House-passed budget proposals included excellent committee report language directing agencies to act on ME/CFS, yet did not increase the existing budget for ME/CFS. Also the House decided to eliminate the PRMRP, but instead added ME/CFS into the “Combat Readiness” research program with $10 million of potential grant funding for ME/CFS researchers. If the House and Senate versions are combined in the final budget, ME/CFS researchers could apply for up to $360 million in new defense research funding in FY 20.

The best thing you can do now is to say “THANK YOU” to our Congressional funding request supporters so they will continue to support our requests during this extension

 

[Apologies for the delay everyone - here's the updates from last week. We now know that the budget decisions will be delayed until December 20th]

Reporting Back from Capitol Hill


Solve M.E. Board member Carol Head and I (Emily Taylor) just returned from Washington D.C., where we tackled another successful round of Capitol Hill meetings. You’ve probably already heard about the budget delays and we tried to find real answers about what this means for ME/CFS

What you Need to Know:

• It is very likely that federal budget decisions will be postponed until December or later.
• Senate budget team remains strongly supportive to adding ME/CFS to Peer Reviewed Medical Research Program (PRMRP).
• New opportunities may have opened for ME/CFS NIH funding!
• If the combined Senate and House bills pass, ME/CFS researchers could apply for up to $360 million in new defense research funding in FY20.
• You can help by thanking our supporters or doubling your gift today!

“Playing politics” with ME/CFS funding

One of the most powerful things we learned last week was that budget decision makers favorably received our requests for increased ME/CFS funding. Unfortunately, larger political battles around party issues have significantly hindered typical funding decisions made by Congress.

The result is that ME/CFS (and many other small programs as well) will not see direct funding increases, but new opportunities may have opened for ME/CFS funding at the NIH! We’ll share more information as soon as we can.

Senate Commitment Remains Strong

The Senate Appropriations Committee leadership remains strongly committed to including full funding of the PRMRP at $350 million and including ME/CFS as an eligible topic area for this program.

Solve M.E. has been invited to coordinate between U.S. Army Medical Research and Development Command and researchers in order to best support our ME/CFS scientists in the grant application process. If the combined Senate and House bills pass, ME/CFS researchers could apply for up to $360 million in new defense research funding in FY 20.



Continuing Resolutions Stop Progress! #CRsStopProgress

Right now, the biggest threat to our advocacy work is a “Continuing Resolution,” also known as a CR. This is what happens when Congress is unable to pass a budget and doesn’t want to shut down the government.

A CR is like hitting the “repeat” button on the previous fiscal year, meaning we’re stuck for another year in the same ol’ song and ME/CFS research is stuck without new opportunities. People with #MECFS have waited long enough and we cannot sit around for another year while Congress plays party politics.

Solve M.E. is joining with over 400 other science and research organizations in calling for Congressional leadership to #FUNDSCIENCE! You can join too on social media using #CRsStopProgress #FundScience or visit the coalition action page here.

What you can do to help!

1. Say “THANK YOU” to our Congressional funding request supporters so they will continue to support our requests during this budget delay. These “thank you” letters were powerful tools when we met with our supporters!
   
2. Join us for ME/CFS ADVOCACY DAY in Washington D.C. from April 20-22.
   
3. Join our Double-Your-Impact Challenge: We’ve secured $750,000 in gifts from several caring and generous donors who wish to remain anonymous. Their gifts will double the impact of your money when you give any amount to help us meet our $1.5M fundraising goal by December 31st!