An $11 billion dollar moonshot for long COVID, ME/CFS and other post-infectious diseases… Now that’s real money! The Patient-Led Research Collaborative for Long COVID called the “The Long COVID Research Moonshot Act of 2024” a “historic step” for long COVID and associated conditions – and it is.
Creating a long-term long-COVID and post-infectious disease program out of whole cloth at the NIH – it doesn’t get more historic than that. Pass this bill and the long COVID, ME/CFS and post-infectious disease communities will look back decades from now and see this as the seminal moment that legitimized and powered these diseases forward.
This bill had its genesis in a piece in Nature last October in which Lisa McCorkell, cofounder of the Patient-Led Research Collaborative for Long COVID and Michael Peluso MD, made a bold call for a ten-year billion-dollar-a-year moonshot for long COVID.
The two asserted that absent committed action by the National Institutes of Health, long COVID research would likely die on the vine. They had plenty of reasons to believe that: the NIH’s neglect of long COVID until Congress explicitly provided money for it, the disaster that the NIH’s RECOVER program has been so far, and the NIH’s unwillingness to create an infrastructure outside of RECOVER to support the disease.
Let’s not forget the historical neglect the NIH has shown for all long-COVID-like conditions. The $13 million/year ME/CFS gets makes it the most underfunded disease per disease burden at the NIH. Post-Treatment Lyme Disease Syndrome (PTLDS) has been around for over 20 years yet the NIH only formally started studying it in 2023. Postural Orthostatic Tachycardia Syndrome (POTS) was discovered over 30 years ago, yet the NIH didn’t start tracking POTS funding until 2020. This year, it provided $4 million to study a disease that affects millions.
Generations of complex, chronic illness patients have been on the waiting list to get even decent funding. It’s a staggering institutional failure, but there’s always been one workaround – and that’s Congress. Thankfully, the NIH’s administrators are not solely in charge of it. The NIH is beholden to the hand that feeds it, and that means Congress. Congress can, with the flick of a pen, turn the NIH and its decades of neglect on its head – and that’s what this bill aims to do.
The Proposal
The bill has gone through quite an evolution. In April of this year, Senator Bernie Sanders presented a proposal to gather interest for a bill mandating $10 billion NIH funding for long COVID. The proposal wasn’t perfect: it didn’t include any other post-infectious diseases, resulting in Solve M.E. producing a letter writing campaign to Senator Sanders. The pushback worked.
The Bill
The bill now requires research “to understand the similarities and differences between Long COVID and other infection-associated chronic conditions with similar phenotypes, such as myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and post-treatment Lyme disease syndrome/persistent Lyme disease, and how activities funded by the Program could improve understanding of such other conditions.”
Besides directly funding research, the bill will also create a long-COVID database, a new grant process that would accelerate clinical trials (yah!), fund public education, long-term surveys, multidisciplinary long-COVID clinics and more.
The NIH – Really?
One could ask, why trust the NIH, when the general consensus is that it’s flushed about a billion dollars down the toilet with the RECOVER program? There are a number of reasons it has to be the NIH.
For one, the NIH is probably the only place that can handle that kind of funding. For another, we need to get long COVID (and ME/CFS, etc.) embedded in the NIH in the same way heart disease, diabetes and cancer are. The NIH does fine with those diseases – it’s these nasty, complex, post–infectious diseases that it’s at sea with right now. Given enough funding and time, it will do fine with them.
Plus, whatever the NIH’s faults with these kinds of diseases, it’s still easily the biggest medical funder on the planet; e.g. there is no substitute – we have to find a way to get locked in at the NIH.
Finally, RECOVER’s problems (e.g. researchers who didn’t do their homework) are well-known – and can be avoided. Disasters at new large-scale efforts like the RECOVER Initiative are not uncommon, and can and often are remedied over time.
Besides, RECOVER’s faceplant is undoubtedly why this bill requires that the Long-COVID Research Program be led by a Director with a “demonstrated commitment to Long COVID and other IACCs (infection associated chronic illnesses) and consulted by an Advisory Board that includes researchers with Long COVID research experience and people with lived experience.”
All Hands on Deck Needed
This is the chance to make a difference for millions – even hundreds of millions -of people.
Including ME/CFS and other post-infectious diseases made both ethical and pragmatic sense. Passing a bill this size, is, after all, not going to be easy. (Historic things rarely are.) Lisa McCorkell noted, “We have never seen anything like this before in Congress”, and this is the “most comprehensive Long COVID bill to ever be introduced in Congress”. That’s understating things. The 2020 $1.15 billion RECOVER bill is peanuts next to this monster of a bill.
Senator Sanders has lined up some heavy-hitting co-sponsors (Sens. Tammy Duckworth (D-Ill.), Tim Kaine (D-Va.), Ed Markey (D-Mass.), Tina Smith (D-Minn.), and Peter Welch (D-Vt.) (but no Republicans). Over 45 organizations, including the Solve ME/CFS Initiative and MEAction, support the bill as well.
Solve ME called the bill “landmark legislation” that addresses the “urgent needs of millions of Americans” and anticipated that passing the bill would expedite “huge research leaps“.
This will likely be an uphill climb, but summiting this mountain would set long COVID and post-infectious disease research on a glide path for success for the next ten years.
Change is in the air. A recent study found that 400 million people across the globe have some form of long COVID. The recent National Academy of Sciences Report on long COVID gave long COVID validation at the highest level, and the push for an Office for Complex, Chronic Diseases at the NIH means that the post-infectious disease communities just aren’t going to put up with being treated as second-class citizens anymore.
The NIH shouldn’t just be there for the big diseases like cancer and heart disease – it should be there for everyone who is experiencing ill health. It’s time for all of us to have a seat at the table and that’s what this bill is all about.
The bill has been introduced but the campaign for the Moonshot has not yet begun.
- Sign up for to get notices about the Moonshot here.
Intuitively I don’t think the answers are going to come from a massive bureaucracy.
More hope lies with the lean and mean, passionate people like Jarred Younger. Any thoughts on when his study might be published Cort?
The RECOVER Initiative has made the NIH look bad, indeed but the NIH does very good work in many diseases. It needs to catch up to long COVID, ME/CFS, POTS etc.
I agree that committed and creative researchers like Jarred Younger will push the field forward the fastest. On the other hand, I love the idea of throwing money at these diseases, getting funding for big, complicated NIH studies, – getting researchers like Younger more funding as well.
Even better would be getting researchers like Younger, Systrom, Klimas, Davis, Proal, Heinrich, Iwasaki etc. a say in how this project would be run.
I imagine the sagging RECOVER Initiative (I hope at some point we can say something positive about it) has had at least one good outcome – this bill requires someone with a proven commitment to these fields.
I’m checking Younger’s YouTube feeds for that study. I imagine we will hear about it there before it is published. I would think it won’t be long – he started testing patients a couple of months ago if I remember correctly.
hi Cort, ofcource i am glad although i do not live in the US. But may i ask a question? there are many ME/cfs researchers like OMF who say that there are other causes then infection for ME/cfs. when i read it right, they will not be studied but again left in the dark. Or not?
I reside in UK, where bills introduced to Parliament can be radically changed and transmuted into something else or something less.
Could you provide, perhaps, a brief outline of how much change is possible to a bill introduced into Congress, for those of us outside US?
What I am really getting at, is how likely is it that this bill might pass without the illnesses, other than LC, being scraped out?
I’m not an expert on this but what I think has happened is the Sen Sander introduced his proposal back in April so that everyone could have a look at it – and tinker with it if need be – and ultimately support it. That resulted in ME/CFS and other diseases being added on to it.
Now that the bill has the Senate co-sponsors and the 45 organizations supporting it I think its set. I don’t think there’s any possibility of ME/CFS and the other illnesses being scraped out.
🙂
Cheers, Cort!
Please help support the bill, if you click the link at the end of the blog post and scroll down to “Write Your Legislators” it will take you to this page: https://actionnetwork.org/letters/moonshot-for-long-covid-research-funding
Let them know there are many of us
I’m a little confused where we are at with the campaign. I signed up for the moonshot but haven’t received any notices and the Patient Led Research Group said it was coming about a week ago and I haven’t received anything from them – yet here is this link to write your legislators…
Thanks for the link! I have written to my legislators and have asked family and friends to do the same. This is a huge opportunity to make a difference in many lives. Thank you, Cort, for bringing it to our attention.
Thanks Lane, I emailed my senators and congressman as well. I don’t think there is anything fishy with the site, it’s just a way to easily find your congresspeople. The requirements of email and address, as you said, are necessary whenever any email is sent to our congresspeople, as they need to verify that you are indeed a constituent. Email addresses are so they can reply back! I received a personal email from my representative earlier in the year when Solve ME was trying to get MECFS language added to the bill, which was successful. Thanks again for providing the link, I hope we can get this done! 🤞
The link at the end of the blog leads to the “Moonshot” website. No info on who’s behind the website, who’s leading all of this or ?? From another post below it looks like Action Network will be organizing? The Moonshot website is obviously not done by a group that knows anything about these diseases because it’s very un-user friendly. Can’t listen to the articles with a reader because stuff opens as a pdf. The page to contact your Congressional delegation requires name, email and full address. I don’t need more junk mail. I’ll write my delegation myself and follow the long slow process without getting spammed through Cort’s updates when/if anything happens. Fingers crossed!
I don’t think they have this down quite yet! We do have a nice bill with some good cosponsors and lots of participating organizations. I don’t think this has really started yet.
I hope i did’t jump the gun linking to that, I’m not affiliated with them or any advocacy organizations it just seemed like a good idea to make people aware that they can support this bill
For what it’s worth I’ve sent quite a number of letters to senators through charity organizations and I’m pretty sure they always ask for name, email, address. though i can understand being wary of spam
Once again, no F word mentioned. The Long Covid people seem to have had a rough few years. I’m 76 and have had fibromyalgia since 1990. Wonder who’s had it worse. I won’t support a bill that seems to throw millions of us under the bus again.
I was disappointed that fibromyalgia was not in there as well. For whatever reason, the FM connection to long COVID has not gotten much press.
Consider this, though! As a prior blog noted all these diseases are nociplastic diseases that produce pain, fatigue, sleep, cognitive issues, etc. – and uncovering the cause of one should inform the others – so while I’m disappointed that FM didn’t make it in there (probably because it has not been so associated with infection) I am hopeful that advances in these other diseases will apply.
Yes I just wrote that further down before seeing this! I just saw the Iwasaki study in long COVID showing that transfer of autoantibodies from long COVID patient blood/serum resulted in mice that had pain and POTS-like symptoms. Same as the Goebel studies in FM! Yet another overlapping study 🙂 Come on! https://www.yalemedicine.org/news/antibodies-from-long-covid-patients-provide-clues-to-autoimmunity-hypothesis
Hi, so this is an odd question. I participated in the SOLVE ME LC Plan (Long Covid Patient Leadership Advancement Plan). Because of this, I have an opportunity to apply for a RECOVER Patient Representative position for a1 year term.
After reading this, (the frustrations with the Recover Program and NIH), I am wondering if it will be worth the the ‘energy’ it will take from me to even apply for this. I am pretty much homebound, but want to be involved. I have limited energy and don’t want to put all my eggs in a basket that won’t do much.
I hope this is ok to ask. I know it is only opinions, but as you know, we have only so much limited energy.
Thanks,
Jill
Like a lot of the commenters here, I’m not so sure the NIH will do the best job. I haven’t read the bill, but hope there is some sort of stipulation that some of this money be farmed out to other vetted researchers not necessarily connected to the NIH.
As far as contacting Congresspeople (for those of you in the U.S.–and even those abroad who can encourage research here that will benefit EVERYBODY no matter where they reside), here is a site which gives all the ways for contact; contact representatives.org. And then there is this site to figure out which is you own personal representative (in the House); https://www.house.gov/representatives/find-your-representative
Now, it is interesting to note that there are NO Republican representatives supporting this bill. I hesitate to bring politics into this blog, however, the Republican platform generally does not support such things and Trump in his last presidency wanted to get rid of the hard won Affordable Care Act which provided broad health care for Americans. Because of this, I encourage U.S. voters to support Democratic representatives in the upcoming election in November.
You may not think your comments to government officials count, that they go into some kind of void, but at the very least the volume is noticed. I have written my representatives, and one actually answered back! Some do! (Or at least the aides do). So, please take a moment to write and advocate for this research.
Correction, the first site, the better one, is;
contactrepresentatives.org
(thank you autocorrect ;-( )
Additional thought, this bill is still proposed legislation so it does not have a formal identifier so please refer to it as “Long Covid Research Moonshot Act.”
And I will try again for the last link,
http://www.contactrepresentatives.org
Maybe this will work so you don’t have to copy and paste.
There were Republicans present during the Senate hearings that Sanders chaired. At least one of the Republican Senators seemed to be saying he had a family member with long COVID. There might have even been two. So hopefully getting additional sponsors from across the aisle is just a matter of time and advocacy.
@Amy,
I sure hope some Republicans will come on board! Do you happen to remember their names?
The workings of the U.S. government are somewhat convoluted. Bills normally originate in House or Senate sub-committees which can be chaired by either party–or an Independent, like Bernie Sanders. (This one is from Health and Human Services). Then various members add their names as sponsors. From there, they eventually get their I.D. numbers and wait in a deep pile of pending legislation ready for debate and votes.
The leaders of either House or Senate can then decide whether to put up said legislation for a vote. What has been happening lately is that members of the opposition party will not bring their opponents bills up for a vote (vindictiveness)–so they just languish in the pile.
You would think that a bill like this would be non-partizan, but no–politics has gotten so ugly that even these sometimes don’t get addressed. I think your idea of writing to some Republicans is a good one; especially the sympathetic ones.
Sorry, I think this is TMI for some, but you ought to understand how things work and why something like this deserves all the help we can give it.
Yes, I’m quite familiar with the process, but perhaps others are not. It was the Senate committee on Health, Education, Labor, and Pensions and it was back in April. I don’t recall who the Republicans were, but here’s a link to the document Sanders put together. The committee names appear at the top of the letterhead: https://www.sanders.senate.gov/wp-content/uploads/4.9.2024-Factsheet_The-Long-COVID-Moonshot-Act.pdf
And here is the recording of the hearing: https://youtu.be/jIDMPuqJYBc?feature=shared
I too hope Republicans will support the bill as described in this article. The problem with bills not being brought for a vote is far more complicated than just “opposition” parties lack of cooperation. Often, bills are changed or amended to add things that aren’t acceptable and often are unrelated to the bills purpose. This happens with both parties. Rather than everyone sticking to a clean, forthright bill that actually has a chance of passing, they just get bogged down in party politics.
@Lanetta,
Agreed. I get frustrated with this ‘pork barrel’ technique as a method to ‘trade what somebody wants, unrelated to the subject at hand’, for their vote. But the proposed bill needs to be brought to the floor to be discussed (and amended if desired), and sometimes it is never brought to the floor (for whatever reason).
I am totally on board that things like this get bogged down on back and forth bickering. Of course this happens with both parties. Didn’t want this to turn into a partisan discussion and offending anyone.
No offense taken, Nancy. It just amazes me sometimes how many other people don’t know what a bill goes through behind the scenes before it gets passed (or not). The congresspeople all want something to help their own pet projects or to look good for re-election. Hope this moonshot bill gets submitted for a hearing as soon as they reconvene next week.
Here’s a thought…..
What if all these “diseases” turn out to be our exhausted immune system being unable to suppress each individual pathogen – whether it’s Epstein Barr, Covid, Lyme, Mould, etc?
All of our symptoms could be cytokine release and inflammation related.
It’s time to look at ways of strengthening our immune systems to better fight these pathogens.
It’s already been done with altering T cells to be more effective against suppression of Epstein Barr virus (for M.S. patients).
BINGO
I think the question is why are some immune systems stronger. It’s tissue type. I guarantee it
It is difference in metabolic stress
We can but hope it succeeds. At least the profile of ME, Long Covid and related conditions seems to be improving all the time.
Thank you Cort! I sent my letters.
Let’s just hope that Nath won’t be appointed as the director if this bill ever becomes reality. His recent comment makes it obvious that he still thinks LC and MECFS are separate entity. He is going to waste $11b repeating what’s been going on with MECFS, just like they wasted $1b of RECOVER fund.
Agree
Hi TK, I have had ME/CFS since 1984 and documented Covid two times. After Covid last August, I developed A-Fib and high blood pressure which I had never had before. In fact, I had a complete heart workup the year before and everything was fine. Strokes and heart attacks are more common in the year after even a mild case of Covid. Although Long Covid and ME/CFS have some overlapping symptoms, they are not the same. LC can kill you while ME/CFS just causes endless debilitating symptoms. Dr. Nath is correct.
Can we make sure we include fibromyalgia in the list of complex chronic diseases to benefit from this research? I don’t know if people feel comfortable grouping it as a post-infectious illness like ME/CFS and POTS or not, and I am disappointed it was not included in the bill text but maybe it has less evidence base as a post-infectious illness. It does, however, share so much overlapping etiology and symptomatology that I hope it is somehow included, as I am a little tired of seeing only long COVID and ME/CFS being talked about in all the research coming out.
At least for FM Tonmya has been FDA approved. They will likely have to find a partner company in order to produce it as the company is low on funds.https://www.biospace.com/tonix-pharmaceuticals-announces-positive-pre-nda-cmc-meeting-with-fda-for-tonmya-for-the-management-of-fibromyalgia
Tonmya is not approved yet. Tonix is submitting it as a new drug application to the FDA, and the FDA still has to decide whether to approve it. If they do, it might be available next year. But it is another example of repurposing already-existing drugs to treat fibromyalgia (better than nothing) instead of being able to target specific aspects of the pathology.
It seems easy for over ten million people to be easily excluded and written off, particularly when the overwhelming majority of the sufferers are women.
The LongCovid Moonshot legislation is the most progressive inclusive piece of legislation ever written in this space.
It is obvious when reading it how much hard work and dedication was put into ensuring that every base was covered, no group left behind, that the legislation would ensure progress would be made for LongCovid, ME/CFS, POTS, Post-Lyme.
However, to my mind, it is missing one crucial piece that must be fixed before it is passed.
LongCovid and ME/CFS need a diagnostic blood test to: have successful clinical trials, make diagnosis and medical education easier for doctors, gain FDA votes for treatment, screen the blood supply, gain Big Pharma money, disability benefits et cetera.
Unfortunately, the NIH has proven itself unable to rise to the challenge. The NIH has blocked the Nanoneedle, blocked Microclots, it seems the NIH is more driven to not find a LongCovid and ME/CFS diagnostic test that would solve it and we need advocates to advocate for legislating a LongCovid and ME/CFS diagnostic blood test into existence.
The LongCovid Moonshot was a missed opportunity to push for a LongCovid and ME/CFS diagnostic blood test funding and grant approval mechanism.
I hope that the amazing advocates and politicians who worked on this landmark legislation will see this criticism for what it is – a dear wish to have the thing done that will help solve LongCovid and ME/CFS and many problems all at once.
A “LongCovid and ME/CFS diagnostic blood test funding mechanism” are words that need to be added somewhere in that legislation.
If someone fighting this same fight with us in the trenches would please do the honors.
If you look at the Cancer Moonshot page at the white house it includes provisions for Cancer detection and screening.
A LongCovid and ME/CFS diagnostic blood test funding mechanism must be included in this legislation.
You could help support this grassroots effort to validate a test that is both diagnostic and measures viral load of Long Covid. It’s a sad truth that patients are left to fund research ourselves but here we are.
https://gofund.me/ad755771
Unfortunately for many who suffer from CFS/ME etc. we will be dead before the NIH starts the research it should have started 30 years ago.
You can bet that of that 11B, a few of the top people will be getting a “do whatever you want” go ahead.
It’ll be like the telemarketing “do not call list” they set here in can can land.🇨🇦
They passed a bill to fight telemarketing scams. They spent millions upon millions of dollars fighting telemarketing….THAT WAS 30 YRS AGO….GUESS WHAT….YEP…WE STILL HAVE , AND WORSE THAN EVER…..TELEMARKETING. The money continues to flow for this massive amount of taxpayers dollars.
THIS WILL BE NO DIFFERENT.
YEP how to NOT find a cure for these diseases
No different than diabetes.
I recall a Mexican researche 30 years ago on national TV that cured diabetes with pig cells.
POOF vanished in thin air.it got buried and continues to be.
The human suffering continues
Surprise Surprise! Standard lab tests can’t diagnose long covid! Just as they can’t diagnose ME/CFS.
What a bunch of #%%*
Proves my point above that NIH is not worth putting faith in
https://www.upi.com/Health_News/2024/08/12/long-covid-tests-study/3461723487240/
This is nice to see but I’m doubtful that this will result in a cure or effective treatment since it goes into “general research”. The research system is severely flawed and deficient. I think the gut microbiome and FMT are the most promising avenues, but they need special focus. For example, FMT clinical trials aren’t even attempting to address the most important factor — donor quality.
Appreciate this write-up, Cort. Here’s to hoping that the community will mobilize and do everything we an to get this passed.
By the way, did you see this recent piece from the political sphere in this space?
Mother Jones: “Tim Walz Is Leading the Way on Long Covid Funding”
‘Under the VP nominee, Minnesota was the first state to fund research on the debilitating condition’
https://www.motherjones.com/politics/2024/08/tim-walz-minnesota-long-covid-funding-harris-vp/
I simply don’t understand or care for the name “Moonshot”. This word implies a task or project that’s as big, complex, expensive and as out-of-sight as landing on the moon. Why would anyone be inclined to pass a bill with that type of name characterizing the project as being extremely far-out-of-reach which only equals insane dollar amounts in their eyes?
More like the “you shot yourselves in the foot with the name moonshot bill”.
Inappropriate and unfitting. We as a people determine if something is a moonshot by underfunding, misusing funds and calling out false hope with labels like this. Shame on whomever thought this was a good name.
As a republican, the fact that only democrats support this is enough to change me to vote democratic. At least they cared enough to create the bill so I’ll credit them for that.