Please note this is an action for U.S. residents.
HR 7057: The Understanding COVID-19 Subset and ME/CFS Act
HR 7057 is the ME/CFS community’s first ever attempt to fulfill a dream: a House Congressional bill that begins to address the decades of neglect from the NIH (National Institutes of Health). A bill that requires the NIH to do what it has resisted for so long: dramatically increase funding for ME/CFS.
It’s also the hardest lift we’ve ever tried. We’ve done the supportive Congressional letters – they were easy in comparison. This is a whole other ballgame. Now we’re actually tried to get Congress to force the NIH to fund us until now. We need everyone on board for this to happen.
All hands on deck: “a cry or signal used on board ship, typically in an emergency, to indicate that all crew members are to go on deck. Used to indicate that the involvement of all members of a team is required.”
- The culmination of years of advocacy, this is the first attempt ever to get Congress to force the NIH to spend more money on ME/CFS. How much are feds spending now on ME/CFS? About the same amount they were spending 20 years ago.
- Only Chance – Satisfied with where we’re at? Funding is declining and researcher grant applications are down the tubes? Jennie Spotila’s analyses suggest that funding for ME/CFS at the NIH could actually decrease dramatically. This is
- This is our ONLY chance to increase funding at the NIH. There are no other bills out there. It’s all hands on deck time.
- No other way out – We know the NIH isn’t going to increase funding. NIH director Francis Collins told us that, and NINDS Director Koroshetz confirmed that in a letter to ME Action last year. We know that pushing them is fruitless. We’ve been doing that for decades. The only thing that will work is Congress. This is our only way out.
Big Lift – Big Win
- If successful, the bill would accomplish things we’ve been advocating for for years including:
- Adding $60 million over four years to the NIH’s budget on ME/CFS – doubling its current expenditure – and setting a baseline for even more funding in the future.
- Requiring the NIH to fund more ME/CFS research centers.
- Requiring the NIH to tackle the thorny problem of a good research definition for ME/CFS.
- Requiring the NIH to produce a strategic plan for ME/CFS.
Why Participating in This Event NOW is So Vital
- Unique Opportunity Knocks – With the problems recovering from the coronavirus in the news, we will likely never have a better opportunity to strike. This is our biggest window of opportunity in decades. If you’ve never given advocacy a shot – now is the time to jump in.
- Protection – How the pandemic will unfold is uncertain but one thing is certain: with trillions of dollars added to an already high federal deficit, and with tax receipts sure to crater, we will probably see severe cuts to the federal budget next year. One would hope ME/CFS’s connection to post-viral illnesses would protect its funding, but MEAction recently pointed out that neither the ME/CFS community’s or the (post-COVID-19) long-hauler community’s needs are being addressed by the NIH. It’s critical that we get funding baked in NOW before the full costs of the pandemic hit home, and ME/CFS research possibly gets hit.
- Long-Hauler Support – Supporting ME/CFS research also means supporting the hundreds of thousands of possible COVID-19 long-hauler cases – none of whom we would want to go through what we have. Except for a few small cases, the unique insights produced by ME/CFS researchers into post-infectious illnesses are being ignored. It’s vital for them and for us that ME/CFS researchers have the funds to continue to dig into the processes that produce post-infectious illnesses.
Twelve Democratic co-sponsors have been added onto the House Bill and we expect more to come. No Republican sponsors have joined the effort, though – and they are needed. The first one is, of course, the hardest. One breakthrough there and others will hopefully follow. The point is that if you live in a Republican district, your help is particularly needed.
How to Participate
“We cannot let the number of ME/CFS cases rise due to a lack of research and understanding. As we battle the coronavirus, this critical legislation will help us respond to this ME/CFS hidden health crisis. While we are facing a monumentally dangerous public health crisis, we must take all necessary steps not only to stem the spread of COVID-19, but also to prevent and control its lasting repercussions.” — Representative Jaime Raskin (MD-08) – Sponsor of HR 7057
The Solve ME/CFS Initiative (SMCI) has made supporting the Act very easy. Simply fill out this form here. (Be sure to add your prefix for the form to work. (Mr., Ms., etc.) Better yet, call your Representative and ask to speak to someone. It might make a difference in all of our futures. (This is for U.S. residents only.)
Update – the House just passed a bill to double funding for endometriosis (to $28 million/year). Endometriosis is a pain and fatiguing condition that mostly affects women and gets gets little respect or support from the NIH; i.e. they’re in the same basket we are – and they just doubled their funding. It can be done.
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