Please note this is an action for U.S. residents.
HR 7057: The Understanding COVID-19 Subset and ME/CFS Act
It’s all hands on deck time for the ME/CFS community.
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.
Utilize the Unique Opportunity Before Us – Support HR 7057 – Increase ME/CFS Funding by $60 Million
All-Hands-on-Deck Time
It’s all-hands-on-deck-time
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.
Increase the Number of ME/CFS Research Centers
Click Here to Support HR 7057
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.
Protect Our Funding Against Cuts Next Year – Click Here to Support HR 7057
Bill Update
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.
Double ME/CFS Research Funding and Support the Long Haulers – Click Here to Support HR 7057
Thank you, Cort. You made this so easy!
I had previously done this, but just did it again. Maybe my Congresswoman, Donna Shalala, will pay attention this time if she is hearing from lots more people at the same time!
My Congressperson sent me back a form reply 🙂 – stating that she supports all sorts of great health legislation – and not mentioning this one. I replied to her and am going to give her a call. I view it as part of the education process.
I got the same form reply. It becomes so exhausting to have to continually clarify to my congressional representative what I am actually requesting, as this is not the first time this has happened. It is a sisyphean task!
Yes, it’s the standard reply approach. They have a standard reply for everything! It seems Sisyphean at times but each time there is the opportunity for education. Hopefully, the next time the rep will be more open.
I just sent one to Donna Shalala also.
Hey Cort – Great job keeping all informed and engaged, as usual. Happy to report my wonderful Congressman Brian Higgins (D-NY 26th), for Buffalo/Amherst, New York, has now signed on! Both New York Senators (Chuck Schumer & Kirsten Gillibrand) already agreed to support the post-viral illness research funding allocation, which we hope remains in the current Senate package. I hope all New Yorkers send thanks to our supportive representatives.
Yes!
And thanks for the good news about the Senate package. That means if we can this House Act passed we have a chance at a truly historic win. Let it be so! 🙂
I left a message about this with Higgins voicemail a week or so and literally got choked up–was so embarrassed, but too exhausted to re record! That’s great that he’s signed on!
(Joe, do you know of a good primary in the Amherst area? I just started with a new guy and am not sure he’ll work out.)
I need help finding a representative in Washing state. Diagnosed 2004 in Wellington, FL involved in U of Miami Dr Klimas study. Olslers web, tested positive Lyme Babesiosis, Epstein Barr originating from TO, CA
.
When you fill out your information there is a box that says Find My Representative. They will tell you if you click on that box.
Please let us know if we can help from Australia.
We have several networks here you could tap into.
Thanks Cort as always for keeping us informed.
Good luck!
Thanks Elizabeth. Great to see support from Australia. As we all know what happens in the U.S. has the potential to benefit everyone with ME/CFS.
I wish we could tap into those networks. Unfortunately – this has to be US based. Glad to hear about those networks, though. 🙂
Good luck with building your patient registry.
Cort, Thank you for making this easy. I sent it to my Congresswoman last night. My comment was personal and hopefully, affective.
May I suggest that you edit this to add that the link is at the end of the article. Many PWME are too sick to read this. I read the first couple of paragraphs and then had a bit of a hard time finding the link, and many have worse problems braining than I do.
Great work, as always!
I did kind of hide the link! I have posted it throughout the blog. Thanks so much for the idea, Alisa.
I can be a bit dim and it’s only just dawned on me that though I can’t Support HR 7057 myself, as I’m in Ireland, I have family in the US – who are long settled US residents and are also married to US citizens.
So, even though they don’t actually acknowledge I’m unwell, one sister-in-law may be open to becoming involved. I’ve forwarded on to them an email from Solve M.E. from mid July, which highlights the Support HR 7057 campaign.
Others, who like me are not US residents, may also know people who are and who may be willing to lend their support. Just a thought 🙂
Nice Tracey, Great thinking outside of the box. I hadn’t thought of that! You don’t have to have ME/CFS to fight for more funding. Thanks for the idea.
Lisa Alioto of the Minnesota Alliance needs stories of the harm the Mayo Clinic has inflicted by using GET. She is working with NIH who is about to force Mayo to take their recommendation for GET off the website, but their Clinic persists in using GET on diagnosed ME/CFS patients. Lisa is frantic to persuade them of the error of their ways, but they insist they have never been told of any harm. Contact is mnmecfs@gmail.com.
Janet, thanks for passing along. You say that the NIH is about to force Mayo to change their recommendations but mention that ‘they’ insist they have never been told of any harm. For clarification purposes, are you saying the NIH has never been told of any harm or that Mayo hasn’t?
Thank you for this comment. I have been harmed GET, recommended by Mayo in MN about a year ago. I will absolutely email tomorrow.
The National Institute for Health and Care Excellence (NICE) in the UK, are currently in the process of reviewing their guidelines on ME/CFS.
From ME Essential’s Winter 2020 issue of their magazine (ME Association UK) Dr Charles Shepherd writes ‘We are now entering the third and final year of this work and in view of the large amount of evidence that we have been considering the intention to publish the new guidelines has been put back from October to December 2020.’
In an article in the same magazine Dr Charles Shepherd also writes: ‘The MEA does not believe that graded exercise therapy (GET), which is based on the flawed theory that decreased mobility is mainly due to deconditioning and fear of exercise, and which involves progressive and inflexible increases in activity regardless of how a person is coping or feeling, is appropriate for people with ME/CFS. Like most ME/CFS charities we believe that Pacing is far more helpful to people with this condition.’ (I presume the MEA is the ME Association.)
Dr Charles Shepherd, suffers from ME himself and is a member of the committee that is preparing the new NICE guidelines on ME/CFS.