Status Update On #MEAction’s Congressional Work

#MEAction’s Congressional Committee team has been very busy this year. We want to give you a status update and alert you to an ongoing action you can pursue.

Appropriations

Since March of this year, #MEAction, in partnership with the Solve ME/CFS Initiative and MassME/CFS & FM Association, has been working to increase funding for ME/CFS research and education through the Congressional Appropriations request process. 

These requests included:

1) Requesting $9.9 million for ME/CFS programs at the Centers for Disease Control (CDC) (Labor-HHS committee) and language in appropriations reports guiding the Department of Health and Human Services (HHS), including the CDC and the National Institutes of Health (NIH). $4.5 million of the CDC request was an increase over recent budgets.

2) Adding ME/CFS to the Peer-Reviewed Medical Research Program (Defense committee)

Some 66 Members of Congress from both political parties supported our requests: 46 Representatives and 20 Senators!

The Committees did include some of our requested language – yeah!!!- and adopted measures that should increase the possibility of Department of Defense grant money for ME/CFS research. Yeah again! However, they did not increase the CDC budget. Nothing is final, though, until the FY 20 budget is signed.  As has been the case in recent years, Congress did not pass the budget for the next fiscal year (FY20) by the September 30th deadline. Instead, the President signed a Continuing Resolution (CR) to fund the government through November 21st at last year’s levels. Hopefully, there will be a final budget by that date – if not, there will be another CR.  

Please thank your members who signed letters in support of ME/CFS on social media! Here is a list of the signers and a sample social media post you can use. 

[maxbutton id=”17″ url=”http://www.meaction.net/wp-content/uploads/2019/10/Status-Update-FY-20-Appropriations_-Thank-Yous.pdf” text=”Thank your Member” ]

 

If you are writing a House member, you may want to combine the thank you letter with a request about the House Resolution [below].

You can read the 4 letters here:
House:    Labor-HHS & Defense
Senate    Labor-HHS & Defense

House Resolution

Back in May, we celebrated the historic passing of Senate Resolution 225Supporting the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day.” 

Now it is time to turn our attention back to the House. The House introduced an identical, bipartisan resolution, House Resolution 399, the same day the Senate Resolution passed. However, the House version is not expected to come up for a vote because of different rules in the House. We are still eager to have members co-sponsor it – this is an easy “ask” and a way to build and measure support from our elected representatives. Asking for support is a great opportunity to engage your representatives and build relationships with their staffers.

To take action, you can use this email template to reach out to your representative’s office and ask that they sign onto Res 399. 

[maxbutton id=”17″ url=”http://www.meaction.net/wp-content/uploads/2019/10/Status-Update-House-Resolution-Email-Template-3.pdf” text=”Email your House Rep.” ]

 

Currently we have 9 Co-Sponsors:
Rep. Lofgren (D-CA)
Rep. Bergman (R-MI)
Rep. Joyce (R-OH)
Rep. Wasserman Shultz (D-FL)
Rep. Lesko (R-AZ)
Rep. Kirkpatrick (D-AZ)
Rep. Neguse (D-CO)
Rep Schweikert (R-AZ)
Rep. Stanton (D-AZ)

Senate

We do not have any actions focused on the Senate at this time. 

Looking ahead to 2020

We are excited about the opportunities ahead and look forward to working with you all to advance the fight for recognition, education, and research — so that one day, all people with ME/CFS will have access to compassionate, effective care and treatments.

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Latest News

A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

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