Health Rising readers have gotten quite a few blogs on the effort to get Congress to dramatically increase NIH funding for ME/CFS (HR 7057) – and here’s one more.

As so often happens, something has unexpectedly come up  – and time is short. Congress is meeting to pass the COVID-19 relief bill that we hoped would be our ticket to doubling our funding for ME/CFS.

As part of advocacy strategy the Solve ME/CFS Initiative has partnered with a group called Research America that fights for more medical research funding at the federal level.

The National Institutes of Health

The National Institutes of Health – it’s the biggest medical research funder in the world. We want to keep it strong – and have Congress force it to spend more money on us. This Action does both.

Right now Congress is the thick of negotiations for the next COVID-19 relief package. ResearchAmerica is trying to include $15.5 billion in funding for the NIH in that relief package  – and in doing so they’re providing us with an “in”.

ME/CFS advocates are supporting their effort to increase funding at the NIH – an using it to remind House representatives of our effort.  (The NIH has been hard financially by the prolonged shutdown due to the pandemic.)

We need the NIH support  bill to succeed for several reasons. One – we need the NIH to be as strong as possible. While we regularly bash it (and for good reason)  it is still, and has been for many years, easily the single biggest funder of ME/CFS research in the world.

Given the trillions and trillions of dollars of debt the U.S. has incurred and will incur in the future there may be little appetite for increasing spending next year on ME/CFS.  in fact given it’s poor standing at the NIH, it’s connection to the COVID-19 long haulers may not matter: it’s possible ME/CFS could be first on the block to get cut.

Plus, supporting this bill gives us the opportunity to support our bill to increase our funding.  Emily Taylor has cleverly supplemented ResearchAmerica’s letter to push for HR 7057 as well – the House bill to increase ME/CFS funding by $60 million.  (We still have no Republican co-sponsors for HR 7057 – which is waiting to go to Committee to get voted on. )

This is last minute stuff. The deadline to sign on to ResearchAmerica bill is tomorrow (Wednesday) at the close of business. 

Click on the red link below to go to the House letter to provide relief for the NIH. Fill in your address and then click “Take Action”. That will take you to the page to fill out the form and speed it to your representative.

Then simply paste the letter Emily put together (see below) – revising it however you wish – into text section in the Action, click send and it’s done. You’ve supported the NIH and ME/CFS at the same time :).

Support the Bills to Support NIH Funding and Increase ME/CFS Funding

Use this Letter to Support the $15.5 billon aid package for the NIH

I hope this email finds you safe and healthy in these challenging times! Please let me know if Representative [} has reviewed H.R. 7057, the Understanding COVID-19 Subsets and ME/CFS Act, but I also wanted to share with you this opportunity to support NIH funding more broadly.

Representatives Katherine Clark (D-MA) and John Moolenaar (R-MI) are circulating a “Dear Colleague” encouraging their fellow House members to join them in sending a letter supporting the $15.5 billion in the Senate package for NIH grant supplements needed to restart critical research disrupted by COVID-19. To sign onto the letter please contact Frannie Einterz, Frannie.Einterz@mail.house.gov with Rep. Katherine Clark or Jayson Schimmenti, Jayson.Schimmenti@mail.house.gov with Rep. John Moolenaar.

Of the $15.5 billion that Reps. Clark and Moolenaar are seeking, HR 7057 utilizes less than  0.1% ($15m) for targeted post-COVID ME/CFS specific research at NIH.  A recent article in the Chicago Tribune discussed H.R. 7057 in “COVID-19 patients could be at risk for chronic fatigue syndrome: ‘Your whole life can change if you get this.”

HR 7057 was introduced by Congressman Jamie Raskin (ME-08) in June 2020 as part of congressional efforts to respond to and address the predicted rise in ME/CFS diagnoses linked to increasing COVID-19 cases across the country. To cosponsor this legislation, please contact Ms. Martha Sanchez (martha.sanchez2@mail.house.gov) in the Office of Representative Raskin.

I hope Representative ((last name)) will support these essential NIH research funding actions. If you have any questions or if there is any way we can be of assistance, please don’t hesitate to reach out!.

Thank you!






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