Increased Funding for ME Research and Education

 

***UPDATE: THIS ACTION IS NOW OVER***

Congressmembers Zoe Lofgren and Anna Eshoo, are currently asking for support from their fellow House Members for TWO requests that can increase funding for ME!

These requests would include:

1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee)

2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee)

What our Hill champions are fighting for will take efforts for ME to the next level and in a direction that can be built and expanded upon – something we desperately need. The potential of increasing funding for ME programs by millions of dollars is a huge step. We ask you to urge your elected officials to sign on to the letters by 3/27 that our champions are fighting for!

TAKE ACTION

We have fought for more funding and more attention to ME for years. Since the beginning of #MillionsMissing we have highlighted the inequities of funding allocation and the government’s failure to make ME a priority. Among other things, we have fought for increased research dollars, more informed clinicians, and patient inclusion in federal agency programs. We continue to fight for ME equity and equality, but we know that nothing on the road to this has been or will be perfect. We are simultaneously advocating for more funding for federal agencies to address our priorities and working to hold those agencies accountable to the community and maintain pressure on them to do better.  

The Labor-HHS committee appropriations include existing CDC programs such as the Behavioral Risk Factor Surveillance System state tracking, Common Data Elements project, medical education efforts, and multi-site clinical assessment of ME/CFS, and an additional $4.5 million for three new programs; a nationwide epidemiological study, medical education programs, and Project ECHO, as well as $450,000 in additional funds to accelerate the publication of results from the ongoing multi-site clinical assessment of ME/CFS. Better epidemiological data would substantially enhance our ability to establish priorities for further research and addressing the clinical care crisis.

The Defense Appropriations letter requests the inclusion of language in the Defense Appropriations bill for the FY20 budget that would add Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) to the list of Congressionally Directed Topic Areas in the Peer Reviewed Medical Research Program (PRMRP). Researchers may apply for funding in the 48 topic areas selected by Congress. ME/CFS was included in FY 2011 and we believe it is appropriate to have it included again.  Given the link between ME and Gulf War Illness and the number military service members and veterans with ME, the prospect of gaining DOD funding is a great opportunity for more research to be carried out.  

ME has been diagnosed among service men and women and has clinical presentations similar to those of Gulf War Illness (GWI).

You can read the full letters here: Labor-HHS & Defense

Take action today and email your representative!

We want to reiterate that these initiatives are an enormous sign of support from our champions on the hill. Going into Advocacy week at the beginning of April, this is a wonderful way to build allies for ME. This is such an important opportunity. Please take action today!

PHONE CALL INSTRUCTIONS:

After you have sent your emails, please follow-up with a call to your member’s office. Go here to find your REPRESENTATIVE: https://www.house.gov/representatives/find-your-representative

Once you have identify the phone number for the Washington DC office, you can use the script below to make your call.

CALL SCRIPT:

Hello, my name is _______ (your name) and I am calling from _______ (city), ______ (state) in zip code ______ (your zip code). I am calling to ask Representative _________ to please co-sign two appropriations request letters concerning Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Unfortunately, I need to request a rapid response; the deadline for signatures is Wednesday, March 27, COB. I emailed this request and the letters to your offices today.

The first letter is to Labor HHS Appropriations in support of $9.9 million for existing and new ME/CFS programs at the CDC to meet the urgent needs of ME/CFS patients.. The second is to the Defense Appropriations Subcommittee requesting the inclusion of report language adding ME/CFS to the list of Congressionally Directed Topic Areas in the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).

The CDC has called this disease “America’s Hidden Health Crisis.” I ask you to help us solve this crisis. Please contact Ms. Priscilla Kim ([email protected])  or x53072 in the Office of Congresswoman Lofgren. Again the deadline is COB, March 27. Thank you!

 

 

 

 

 

 

Facebook
Twitter
WhatsApp
Email

Latest News

DHSC released a new progress Report

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below: DHSC Information Bulletin Dec 22 FINAL MECFS updated

Read More »
Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo

Let’s Look at #MEAction’s Top Hits from 2022

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS! ——————- #MILLIONSMISSING 2022: * Bringing together the powerful Virtual #MillionsMissing

Read More »
A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’

Ask your MSPs to stand up for people with ME

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top