Ask Your Senators to Increase Funding for ME Research and Education

 

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

Senator Markey is currently asking for support from his fellow Senators 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 4/09 that our champions are fighting for!

[maxbutton id=”19″ url=”https://act.meaction.net/page/9912/action/1?ea.tracking.id=web” text=”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 senators!

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 SENATORS: https://www.senate.gov/general/contact_information/senators_cfm.cfm

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 Senator _________ 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 Tuesday, April 9th, 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. Brianna Battle ([email protected]) or (202) 224-2742 in the Office of Senator Markey. Again the deadline is COB, April 9th. Thank you!

Facebook
Twitter
WhatsApp
Email

Latest News

Graphic of yellow canary over black and white photo of a coal mine. Text reads "Canary Corps"

CANARY CORPS – Alison’s Story

Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program? Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been

Read More »
A rectangle image with a blueish/purple background. The words, "A Year of Exciting Medical Education Achievements" is in white font on the left hand side with the #MEAction logo underneath. On the righthand side is an image of Jaime Seltzer with a step and repeat and poster at the SDMI conference.

A Year of Exciting Medical Education Achievements

A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model

Read More »
a light orange rectangle with a burnt orange outline. in the box, there are orange flag garlands hanging in both top corners with orange confetti in the middle and at the top. in the bottom corners fall leaves. in the middle of the box the word, "OUR BOLDEST THANKS" in burnt orange. the #MEAction logo at the bottom.

#MEAction Shares Our Thanks for Your BOLD ACTIONS

During this time of thankfulness and gratitude, #MEAction staff wants to share what BOLD ACTIONS we are thankful our volunteers and community have taken throughout the year. We thought we could reflect together on all that we have accomplished this year and how every single one of us is important in this powerful community. A

Read More »