A Federal Funding Update and Action Alert for ME/CFS - July 8 2019

[Emily Taylor]

Did we win yet? A Federal Funding Update for ME/CFS

What you Need to Know:

• The House approved a budget with $5.4m for ME/CFS, the first time in recent memory the program was funded by the House and not eliminated
• The funding increase requested by ME/CFS Advocacy Day was not included.
• Yet, ME/CFS was added to the “Combat Readiness Program” with $10 million of potential grant funding
• Yet, adds $2 billion for NIH and nearly $1 billion to CDC – potential new resources for ME/CFS
• The House included excellent committee report language directing agencies to act on ME/CFS
• The Senate is still debating other budget issues and has not addressed our budget yet
• There is still time! Contact your Senate offices today to support a funding increase for ME/CFS
• Take your Advocacy to the next level with our easy step-by-step ADVOCACY GUIDE

On July 1st, the U.S. House of Representatives approved a package of four appropriations bills. This package included $41.1 billion for the National Institutes of Health (a $2 billion increase), $8.3 billion for the Centers for Disease Control and Prevention (a $938 million increase), and $7.6 billion for the Health Resources and Services Administration ($485 million increase).

As part of ME/CFS Advocacy Day, we requested that ME/CFS be added to the Peer-Reviewed Medical Research Program. The House decided to eliminate this program, but instead added ME/CFS into the “Combat Readiness” research program with $10 million of potential grant funding for ME/CFS researchers.

Also in the package, Committee Report Language (directions from Congress to Federal agencies) reflected the requests that Solve ME made earlier this year. This includes:

• A call for NIH to initiate new ME/CFS disease specific funding announcements
• Encouragement to the NIH to create an initiative to reach consensus on the ME/CFS
• case definition
• Recommendations that the NIH create mechanisms to incentivize researchers to enter the field of ME/CFS
• Concern to HHS about the disbanding of the Chronic Fatigue Syndrome Advisory Committee (CFSAC)
• Calls on HHS to submit a plan within 90 days to address the crisis in clinical care and accelerating drug development for ME/CFS

The U.S. House of Representatives has completed 9 of the 12 appropriations bills for FY 2020. The passed appropriations bills now await action by the Senate before the end of the fiscal year on September 30, 2019.

Now is the Time to Act! Tell Your Senator to “SUPPORT A FUNDING INCREASE FOR ME/CFS” Today!

Thanks to your hard work during ME/CFS Advocacy Week, the U.S. Senate Appropriations Committee is currently considering our request to increase federal ME/CFS funding to $9.9m. Ask your Senator to support this request today.

Our champion, Senator Markey, led two requests with 18 other Senators from both parties. These requests, if approved, can increase funding for ME/CFS research and education!

1) Requesting $9.9 million for ME/CFS programs at the CDC (Labor-HHS committee)
2) Adding ME/CFS to the Peer-Reviewed Medical Research Program (Defense committee)
Please contact your Senators TODAY and ask them to support these efforts.



Experienced Advocates! Check out the Advocacy Action Guide to take your advocacy to the next level.

 

[Mary]

I took action - you can too! They make it easy!

 

[Learner1]

@Emily Taylor I tried using the Take Action form from my Android phone but there was no Submit button anywhere. Can this be corrected?

Thank you for all of your hard work!

 

[Emily Taylor]

@Emily Taylor I tried using the Take Action form from my Android phone but there was no Submit button anywhere. Can this be corrected?

Thank you for all of your hard work!

Thank you @Learner1! You need to select an answer for the "prefix" field and complete all other fields and then you should see a button that says "Show me My Officials"

Only after you select that button - which verifies the information you provided with the congressional electronic messaging system - then, you will see a "Send My Message" button. It is a two-step process.

Unfortunately, we must comply with the formatting of the Congressional system - and it's not very ME friendly.

I have an apple phone myself - so I've never tried it on an android system. Please let me know if that solves the problem. If not, I'll contact the webteam and double check about android access.

 

[Mary]

@Learner1 - I had the same problem on my computer (I received an email notification about this), there was no way to submit a response, until I hit "Show me my officials" (which I did just for the heck of it), and suddenly I could see the "send my message button"

 

[Learner1]

@Emily Taylor, thanks for the tip! As you suspected, I had neglected to fill in the prefix field! It worked when I did!

 

[nyanko_the_sane]

Action taken, thanks for posting!