The Long COVID Funding
The 2020 COVID-19 Economic Relief bill had been months and months in the making, and while Emily Taylor, the lead advocate for the Solve ME/CFS Initiative (Solve M.E.), had publicly shared nothing, she was keeping a very close eye on the long COVID funding. The language which ended up in the bill, she said, had been bouncing around the Hill for a while.
In fact, she and Solve M.E. had submitted similar language in H.R. 7057 – the bill that they and hundreds of ME/CFS advocates had been fighting for to give Congress a voice in ME/CFS funding at the NIH. With the number of ME/CFS grant applications at the NIH going down, and Director Collins reporting there would be no more new money for ME/CFS, Congress was the main focus.
Back then the goal was to link ME/CFS as closely as possible with long COVID. The virtual April 2020 Lobby Day smashed attendance records as hundreds of ME/CFS advocates made that connection clear to their representatives.
That foundation laid, Solve M.E. then pushed for $100 million to focus on “the rapid acceleration of diagnostics” in order to make the scientific connection between long COVID and ME/CFS crystal clear. Most people expected a COVID stimulus package by July, but the Republican counteroffer to the surprisingly large (and unpassable) package offered by the Democrats made it clear the parties were nowhere close.
Solve M.E. then spent the next couple of months trying to get the “Understanding COVID–19 Subsets and ME/CFS Act” (H.R. 7057) across the goal line. It lined up over 50 co-sponsors – a record for ME/CFS – but by then, anything COVID-related had become a political hot potato and the House Health subcommittee refused to take it up. That bill was dead in the water as well.
Solve M.E. switched focus, gathered a coalition of 21 ME/CFS, related chronic illness, and public health organizations and on December 4th published a letter emphasizing the need for much more long COVID and ME/CFS research funding.
Congress ended up passing the $900 billion COVID relief package on December 20th, and President Trump signed it into law on the 27th. Emily said she got a copy of the final bill in the wee hours of the morning from Thorn Run Partners (the DC lobbying group Solve M.E. had retained to work on ME/CFS issues.)
The long-COVID part took up just a few lines of the massive bill but they were crucial for our future. With the vaccines coming, the pandemic was sure to ramp down in 2021. We had an agonizingly short window of opportunity to get long-COVID funding realized. This was it.
The $100 million for rapid diagnostics Solve M.E. had pushed for was there – and in much the same language – and so was another billion dollars for long-COVID research. Where had that come from? Emily reports that it came down to an ME/CFS-friendly Senator with influence. They know who it is but cannot share that information at this time.
The language regarding long COVID was vague. By then, Emily said she’d been tracking different versions of the bill for 8 months and had communicated with committee members and followed up with congressional staffers. They asked her: is this what we wanted? The answer was yes. Over a billion dollars was going to flow to long-COVID research and that meant a potential bonanza for ME/CFS and other post-infectious diseases.
Everyone who participated in that effort should pat themselves on their back. It’s hard to tell from an individual standpoint how much of an impact any one person’s talk with a representative might make, but add hundreds of conversations together, though, and the potential for impact is huge.
The Thorn Run lobbying group believed the 358 advocates who joined Solve M.E. during Lobby Day, the push Solve M.E. and the ME/CFS community next made for H.R. 7057, and then the submission of the Coalition letter played a critical role in educating the legislators about the need for long-COVID and ME/CFS funding. If you participated in any of these efforts, you may have made a huge difference in our future.
Onto the National Institutes of Health (NIH)
The big question awaiting us is how the NIH is going to roll out the billion-plus funding for the long COVID. After it became clear that a Coalition was the most effective way to get the NIH’s attention on ME/CFS and long COVID patients’ needs, Emily reached out to even more organizations, forming the Long COVID Alliance (www.LongCOVIDalliance.org). (Health Rising is a member.)
The Alliance is emphasizing research topics like dysautonomia (specifically POTS), small fiber neuropathy, exercise testing, mast cell activation, and neuroinflammation, which may not loom large on the NIH’s radar but have proved valuable in ME/CFS and related diseases. Plus, an appendix provides examples of research projects that are “shovel ready”; i.e. that simply need the funds to move forward.
I don’t have any idea if any of this money will go specifically to ME/CFS. My guess is that the NIH will set up a grant award system and ME/CFS researchers, like all others, will be able to apply. Given the small ME/CFS research community, though, even if successful ME/CFS researchers couldn’t win even a small fraction of the grant awards coming out of a funding award this large; i.e. the vast majority of work on long COVID will be done by people outside this field. People with ME/CFS are also natural control subjects, though, and will hopefully participate in many long COVID studies.
The great potential outcome is that we learn what causes long COVID, and by doing that, we also learn what causes ME/CFS.
We haven’t always had good timing. A funding increase for the CDC’s ME/CFS program got snuffed out, for instance, when President Trump raided federal agencies to build his wall. The unpassable stimulus bill put forward by the Democrats halted the chance for an early stimulus package. Then H.R. 7057 got snuffed out in the Democratic House by the political posturing around the COVID-19 stimulus package.
The point is that stuff is always happening and it’s easy for a cause like ours to get temporarily lost in the shuffle. Countless efforts have been pushed through or derailed when the stars shifted course. The key is to be good enough and consistent enough to override the “acts of nature” that can occasionally occur.
In other ways, though, our timing has been really good. The five years of consistent work enrolling allies on the Hill paid off big time with the long -COVID funding. Dr. Avindra Nath had done enough work on ME/CFS in his intramural study that he was able to parlay that into a similar study on long COVID.
Then, as the pandemic hit – and the opportunity for people with ME/CFS to participate in Long COVID studies loomed – up popped Solve M.E.’s You + ME Patient Registry. It now provides a rigorous way to track both ME/CFS and long- COVID patients. Having well characterized ME/CFS and long COVID patients and healthy controls in one package is a pretty sweet deal for researchers..
As of February 26th, the Patient Registry had 2,056 people with ME/CFS; 362 people with COVID and 316 control volunteers in it. It’s a nice start, but we can do much better – given how easy and painless it is to join it and make a difference in our community.
Enrolling in the You + ME Patient Registry simply requires signing up and filling out questionnaires about your health. You’re not committed to being in any studies (you can even agree not to be reached) but simply joining up will provide valuable and unique data on what ME/CFS is, how it gets started, what symptoms are produced, family history, comorbid disorders, an understanding of how ME/CFS proceeds over time, etc., plus it will provide patients for studies and clinical trials. It’s the kind of data that big pharma, for instance, really loves and has been missing from us.
Please enroll in the You + ME Patient registry here
The Registry is currently open to U.S. residents and will open globally soon
Centers of Excellence Coming?
Congress, Emily said, is watching what the NIH is doing with the billion-plus dollars they got for long COVID. It was Congress, after all, which appropriated all that money to the NIH. That’s good news for a disease (ME/CFS) which has noticeably increased its standing on the Hill over the past year.
Emily feels we’re in a good position. Our strength is that science continues to indicate that the link between long COVID and ME/CFS is strong.
That link could set us up for some monumental gains. Emily got excited when she talked about the potential for a dozen or more Centers of Excellence addressing long COVID (and ME/CFS) being built across the U.S. They’d be called long COVID Centers at first but Emily sees them evolving into post-viral illness and eventually becoming M.E. clinics.
We’ve been trying to get Centers of Excellence for ME/CFS for decades. They make total sense as they provide a triple whammy – treatment, research and education – all in one basket. The U.S. ME/CFS Clinician Coalition is there, ready to help: it already provides a complete package of the resources needed to quickly educate providers. Long-COVID Centers of Excellence could be a gateway to nation-wide physician education effort. Bye-bye scarcity and stigma – hello abundance and legitimacy?
The fate of H.R. 7057 and its 50 co-sponsors is unclear at this point, but one thing is clear. The star of its sponsor, Rep. Jamie Raskin, is rising. Raskin lead the recent impeachment trial against Donald Trump. (Seven of the nine Democrats involved in the impeachment prosecution supported H.R. 7057. Their stars have likely risen as well).
Raskin’s not the only star on his team. Emily reported that Raskin’s chief of staff Julie Tagen – whom she’s been in close touch with throughout the bill’s progress – showed a special kind of courage when the mob stormed the Capitol.
Raskin and his team were quickly whisked away to a secure area but Raskin’s daughter and son-in-law – who were there to see history made – were not. (Instead, they saw a very different kind of history). Tagen left the secure area to go and to find Raskin’s family. When she did, Tagen took them to an office, barred the door, and defended them with a fire poker as the mob rampaged outside. Luckily, they were unharmed.
Stay tuned for more on the future of H.R. 7057.
More Long-COVID/ME/CFS Stuff
Sequestration Ending – Things are looking up in ways we might not have guessed. Emily stated this is the last year of the 2011 Budget Control Act, known as budget sequestration, which limited an ask for more funds to one effort a year. With the Act ending, it will be possible to directly ask for more funding including doing precision asks for special efforts.
As of February 26th, new earmark rules may also change the budget process. Hopefully, the Solve M.E. team can use earmarks to directly mainline funding to key ME/CFS research centers.
As the Democrats have historically been more supportive of our requests, the Democratic control of all three chambers offers more opportunities for ME/CFS as well.
Waiting for Strategic Report – When the pandemic hit, the DHHS (Department of Health and Human Services) had been tasked with providing Congress with a strategic report to address government response to ME/CFS. The pandemic took that off the table, but Congress recently informed the DHHS that it was still expecting that report.
Emily is hoping to use that as leverage to get a long-Covid federal advisory committee or taskforce created, with the idea that everything we do with long COVID ultimately becomes a post-viral or ME/CFS committee. They want to push that committee through Congress so that the DHHS doesn’t dissolve it as they did the federal Chronic Fatigue Advisory Committee (CFSAC).
The possibilities before us – greatly expanded funding, Centers of Excellence, better educated doctors, even getting at the roots of ME/CFS and long COVID and developing treatments – are immense. At the very least, it’s hard to imagine we won’t make some real inroads in these diseases.
It has to be emphasized that we didn’t just stumble here. All that long-COVID funding didn’t just fall out of the sky. It took work. Four years ago, Emily Taylor laid out a long-term plan that involved things like consistent messaging, getting into all the rooms, building relationships, and always keeping our eyes on the ball. Four years of us consistently showing up on Capitol Hill and enrolling others in our fight led us to the point where this community played an important role in this vastly important piece of legislation – not just for us – but for hundreds of thousands, if not millions, of people with long COVID.
So what’s next is to continue doing just that – to continue showing up and enrolling others in our cause. Last year, a record 358 people with ME/CFS and their supporters participated in Solve M.E.’s virtual Lobby Day.
Registration into Solve M.E.’s virtual “ME/CFS & Long COVID Advocacy Day” on April 21st has opened. This year, let’s make it 1,000 people. Can you imagine the difference a 1,000 people with ME/CFS could make?
We, after all, have the best story in town. We’re the really long haulers! We were there way before COVID. It’s time to make up for past wrongs and take care of them and us…
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.