Geoff’s Narration
The Blog
It’s time to shoot for the moon!
The time is now. Never did I dream that we’d have an opportunity like this. I still find the fact that it exists incredible.
The fight for the $1 billion/year (yes, that’s billion with a “B”) “10-year Long COVID Moonshot Bill” is here. We’re not playing for petty cash anymore. We’re not trying to establish a base camp and slowly make our way up the mountain. We’re putting on our oxygen masks and going for the peak. This is about creating and funding the field of post-infectious disease research all in one go.
It’s an audacious effort, and a necessary one. It’s not just about long COVID – this is about post-infectious diseases like long COVID, ME/CFS, POTS, and Lyme disease as well. The NIH has no idea what to do with post-infectious (or “infection-associated chronic conditions and illnesses”, “IACC”). It has no slot to put them in, it doesn’t track them, and it doesn’t fund them. How bad is it? It recently whacked funding for its small ME/CFS research center effort by 50%.
That means we have to create something wholly new, and that’s what this bill does: it creates a massive “Long COVID Research Program” and houses it in the Office of the Director. Note that even if this bill didn’t include ME/CFS, POTS, and post-treatment Lyme disease funding, it would still be a huge win for these communities. Why? Because, as Avindra Nath said, “If you find the answer for one disease, you’ll probably find the answer for all”.
Thankfully, it does include the other diseases. While the bill is primarily focused on long COVID, it specifically requires research into ME/CFS, POTS, and post-treatment Lyme disease (PTLDS) as well.
The program must: “conduct comparative research to understand the similarities and differences between Long COVID and other infection-associated chronic conditions with similar phenotypes, such as ME/CFS, POTS and PTLDS.”
The Director of the program has to have shown a: “demonstrated commitment to addressing Long COVID and other infection-associated chronic conditions, such as ME/CFS, POTS, and PTLDS.”
The Director shall consult with: “independent, patient-led organizations or advocacy groups representing patients with Long COVID and other infection-associated chronic conditions with similar phenotypes..”
This is what you get in the bill:
- Massive Research Expansion – massive expansion of long COVID, as well as ME/CFS, POTS and Lyme Disease research.
- Real Experts Leading the Show – no more newbies running the show (aka RECOVER Initiative). The program will be led by a director with expertise in long COVID and post-infectious research who has demonstrated a commitment to diseases like ME/CFS, Lyme Disease and POTS.
- Accelerated and Better Clinical Trials – the antidote to slow-moving, uber conservative, yawn-inducing clinical trials from the RECOVER Initiative. $1.4 billion will go to accelerated clinical trials vetted by people who know these diseases.
- Collaboration and Movement – no more siloed research that benefits only one disease – this bill calls for collaborative research across all of these conditions to enable breakthroughs for all these diseases.
- Funding Long-COVID Clinics – more access to doctors focused specifically on long COVID.
- Better Doctor Visits – educational support and clinical care guidelines will ultimately result in more helpful (and less stressful) doctors’ visits for everyone.
- Understanding Vaccine Injury – if you came down with ME/CFS or long COVID after a vaccination, this bill may be your only real chance to find out what happened.
Something this big and impressive is possible only because disease communities have woken up to the fact that they will never get to where they want by going it alone, and by working together, they can create something magnificent and lasting.
Over 55 organizations – only 15 or so of which are strictly focused on long COVID – support this bill. The usual suspects in the ME/CFS world (Solve M.E., #MEAction, the Open Medicine Foundation, MASSME, Workwell, Health Rising), are there, as are big organizations like the American Academy of Physical Medicine and Rehabilitation, the American Association on Health and Disability, American College of Clinical Pharmacy, Infectious Diseases Society of America, the Mount Sinai Health System, and the National Association of Councils on Developmental Disabilities.
The Moonshot bill would create a seismic shift in how long COVID and diseases like it are understood and treated.
Seismic Shift
Passing this bill would create a seismic shift in the force – a defining moment – for the hundreds of millions of people with post-infectious diseases. It would overnight literally create a new future for all of us. Instead of stagnation – progress; instead of despair – hope. It would be an accomplishment we could look back on with pride and say, we really did change the world that day.
Big Ask – Big Gain
This bill is called a Moonshot for a reason – it’s a big ask! Getting $1 billion a year for ten years through Congress is not going to be easy and the fight for it is just getting started in the Senate.
Currently, 5 Democrats and 1 Independent (Sen. Tammy Duckworth (D-Ill.), Sen. Tim Kaine (D-Va.), Sen. Ed Markey (D-Mass.), Sen. Tina Smith (D-Minn.), Sen. Peter Welch (D-Vt.), and Sen. Bernie Sanders (I-Vt.)) are co-sponsors of the legislation in the Senate.
(No Senate Republicans are yet co-sponsoring the bill – and they are particularly needed.)
This is how we build a better future.
Supporting the Bill
Since there is no centralized effort, there are many different ways to support this bill. The easiest that I have found to use (not surprisingly) is Solve M.E.’s Action Program which will automatically whisk you to your representative office allowing you to provide an email to them. Then it will help you place a call to the office if you want to. (This does not appear to work on weekends):
A script is provided, but I wrote my own script 🙂
Dear Senator,
I am writing to request that you support (and co-sponsor) the Long COVID Moonshot bill. I have had chronic fatigue syndrome (ME/CFS) for over 40 years, and for 30 of them, I have watched the NIH dismiss and neglect the 3 million people with what studies have shown to be one the most functionally disabling diseases known.
The NIH should be for everyone, but the $13 million-a-year in funding it provides for ME/CFS indicates that it’s not. In fact, the NIH just reduced funding for its ME/CFS research centers by 50%.
I have grown old and watched people die with this disease while the NIH has stood by – so I ask you on behalf of the really long haulers – the people with ME/CFS who have had a long COVID-like illness for decades – to support a bill that provides funding and hope not only for the long-COVID community but for the ME/CFS one as well.
Please co-sponsor the Long Covid Moonshot bill.
There will be more to come.
Realistically, what are the odds of this bill being passed?
Here’s what I think: 6 pretty well-known Senators have signed onto this and Bernie Sanders introduced it. Health care and medical research is one of the few bipartisan areas left and I would be astonished if some Republican Senators and their families haven’t been touched by long COVID.
This is not the kind of bill you introduce that you know won’t pass in order to make a point. I assume that the co-sponsors have been talking to their colleagues and believe it can make it through.
I looked up how many cosponsors bills usually have and its 5-10 so this bill is right in there.
Thanks for this response, and all the work you do for the ME/CFS community in general. Do you know when the bill is likely to be voted on in the House and Senate (assuming that stage is reached)?
I don’t know. I do expect frequent updates on its progress though.
Bernie Sanders as the sponsor almost guarantees it is DOA. You need Dr Bill Cassidy R
as the sponsor or at least the
co-sponsor. Getting democrats to support the bill is the easy part but it requires full bipartisan support if it’s got a chance of being approved. Setting the funding level of 1 billion per year for 10 years is at a trigger level that will make it difficult to proceed forward. You are basically admitting that even at a billion dollars funding level no solutions are even on the horizon but rather process will be like a Chinese water torture. Plus look at the expenditures over the past years being mostly wasted not even putting the structure in place that could allow meaningful progress.
I sincerely hope that it’s funded as I have suffered greatly after a respiratory viral infection in August of 2013 subsequently on September 4th receiving my flu and shingles vaccinations and within 3 weeks I had ataxia and autonomic dysfunction with CFS/ME. Guillian Barre was the culprit. I was misdiagnosed due to my retained hyperflexic reflexes.
Cort, only 6% of bills pass every year and virtually all of them have bipartisan support. There is not a single republican signed onto this and Bernie Sanders is an extremely polarizing figure. This bill has no chance. We should put our hopes elsewhere.
But put your hopes where? I mean that sincerely. Do you know of any other bills to increase ME/CFS, long COVID, POTS and Lyme Disease funding? The last one to try to increase ME/CFS funding was six years ago. I don’t see any other options.
It may very well be a very tough pull but let’s not give up hope. We were aiming for a couple of hundred million dollars for the long COVID bill 5 years ago – and we got $1.15 billion. NOBODY expected that. We just don’t know.
On our side this is a health care issue – and sometimes that’s enough to get people to cross the aisle and vote for it.
I say let’s see what happens. Let’s go for it and if it doesn’t work out we can do a post-mortem afterwards. If it does we’ve changed the world.
All it takes is a couple minutes of each person’s time.
I ditto Cort.
Thank you for the work you are doing. I sent a donation and sent a note to my congresspersons.
This is how things get done…continuous advocacy….not giving up.
We are in a period of change. Nothing is/was ever guaranteed…but don’t let that dissuade you.
This person with ME/CFS is grateful for all that you and the team are doing. as Kamala says “We are turning the page. We are not going back”.
All the naysayers are wasting precious time, energy. Power on!
Maybe it would be time better spent to write to your republican representatives and ask the to sponsor the bill. I don’t know why this is even controversial other than republicans allergy to spending any money on things other than the military and tax cuts for the rich. As Cort said, I cannot imagine they also don’t have family that have been affected by long COVID.
Agree. Not a chance.
Luckily there’s some very promising research coming through without this.
Resignation will kill possibility every time. If everyone who read this post passed it on and did something God knows what would happen. On the other hand, deciding ahead of time that it won’t pass will surely be the death of it. How ironic it would be if that happened. It was in our hands and we dropped it….
Good luck.
I like hope.
I don’t like false hope.
Had far too much of that with this illness.
It’s hard to believe in Hope after years and years and years of constantly getting your hopes up only to have them crushed again and again.
Whatever happens, Katie, we know this – 6 well known Senators and dozens of organizations have gotten behind a gargantuan bill to bring massive funding to long COVID, ME/CFS, POTS and Lyme disease. That by itself says something. This could not have been predicted. If you told me five years ago that ME/CFS would be part of a $10 billion effort I would have thought you were crazy. Hopefully, this bill will pass. If it doesn’t it will set the stage for the next bill.
Longshot bill?
Soooo? I don’t know if it is a long shot but really who cares? What does that have to do with anything? With this much at stake, I’m going for it. I’ll take 10 minutes to go for the longest of shots.
As above. False hope is no good for anyone. Heaven knows we’ve had a lot of it over the years from a number of the usual suspects, who promise heaps and deliver next to nothing. I won’t name names anymore.
But I admire your optimism.
I have hope, but I am careful where I place it.
People especially those from Kansas should contact senator Roger Marshall. Someone in his family has severe long covid and he got quite angry at the NIH in a senate hearing for all the right reasons: https://www.nytimes.com/2024/02/18/opinion/long-covid-research-funding.html
I can only assume he didn’t sponsor the bill for political reasons.
Maybe it indicates nothing…
I started the day looking at NYT, which has a feature opinion peace titled “Inflammation May Be The Root Of Our Maladies.”
Then I flipped over to HR and saw this blog.
How these two are connected, or should be connected, I just wanted to float out there. (Note that ME/CFS is not mentioned in the NYT article.)
https://www.nytimes.com/2024/09/16/opinion/inflammation-theory-of-disease.html
Cort — you should add a LARGE banner at the top of every page on health rising with a call to action link for people to contact their senators, like during Wikipedia donation drives.
It’s in the works 🙂
(…)”Avindra Nath said, “If you find the answer for one disease, you’ll probably find the answer for all”(…)”
Remarkable 1 cause for a heterogeneous disease. A medical condition is called heterogeneous or a heterogeneous disease if it has multiple etiologies (root causes). Isn’t that a contradiction in terminis.
I think I’ll take Nath’s word for it. 🙂
Really? I don’t rate the guy
Honestly Matthias – what do you or I know? Nath has co-authored hundreds of papers. He’s the head of the neurological division at the NIH’s Intramural hospital.
Given who he is I would give at least entertain what he says.
Who at NIH will be doing any research on post-traumatic hypopituitarism (PTHP)?
I don’t know but the pituitary gland could be right in the middle of all this.
I thank you for your appreciation of the pituitary’s function, and it possible relation to various currently-unexplained health problems.
Republican Senator Jim Inhofe from Oklahoma retired after 40 years in congress because he had Long Covid.
Yet, Inhofe also voted against several key Covid relief bills, including the Families First Coronavirus Response Act, which required employers to give employees paid sick leave or expanded medical and family leave for Covid-related reasons. That bill had enormous bipartisan support, with 90 senators voting for it.
Inhofe also voted against the American Rescue Plan, which was aimed at providing economic relief due to the crisis caused by the pandemic. The bill included funding for the national vaccination program, the stimulus checks, and the expanded unemployment benefits.
Just saying….
Imhofe was a piece of work! He was really something. He made a name for himself all over the place.
Hi Cort, thanks for this and I like the script you wrote too! Do you know if it’s possible to support the bill from outside of the US at all?
I’m afraid it’s not.
Ah, too bad, but I’m crossing everything and send a huge THANK YOU to anyone who helps support this… if we don’t try, we don’t get!
🙂
I’m not an American citizen, but can foreign patients share their experiences?
The United States as a pioneer in the field of post-infectious diseases and a bearer of hope throughout the world is perhaps a little more convincing for senators of the importance of this legislation?
It’s a great idea particularly since, as you note, this bill would impact people around the world. Everyone has a stake in this! Unfortunately, you often need a US address to get through to the Senators and Congressman.
Perhaps it would be possible to add our testimony to those written by an American citizen? Pair up with ME patients from other countries?
I agree every patient or relative who lives in a Republican state must write their senators with the proposed text that Cort wrote above. The only way this bill will pass to communication that the economic impact of all of us sick people not working is much greater than the value of the bill. It’s important to communicate that mecfs is an illness that anyone can get, often hitting highly motivated, successful individuals who are overexerting. It’s scientifically proven by changes in the body that technology is only now available to measure. – it is not obtained by specific high risk activities like aids which can be treated and avoided. The reason the Covid bill passed during acute Covid was fear. Most people do not fear Covid anymore.
Yes, in particular, those who live in the Republican states. Health is a bipartisan issue and we don’t need to bring all of them over – just a couple. Those who have Democratic Senators please ask them to cosponsor the bill as well.
If you want to get the support of representatives in the GOP, you will get their attention by showing how all the sick people from long Covid and other post viral disorders have a significant negative impact on the economy. That is likely the best way to get attention of most Republicans.
I wondered this too.
I wondered about how people outside the US could support this too….
I’d love to support this but I live in New Zealand.
What do people think about a global petition?
Is there an affiliate group that can create a savvy, fun social media campaign to boost awareness of this?
Are there famous people with these conditions who we could shoulder trap to create content on this using whatever # this bill uses?
Thanks Cort ❤️🙏
Alec – I will write to both Kansas senators as I live in Lawrence, KS. Using the link thru Solve will take little energy. Roger Marshall is not someone to put your hopes in. I won’t say more on that because I did not want Cort to have to censor my post. Jerry Moran has twice broken ranks but only under the most serious circumstances….he won’t do it for this. That said, folks it is important to voice an opinion. I live on an island of sanity in Lawrence surrounded by … well by whatever this is.
🙂 Good for you, Janet! You never know. Roger or Jerry may know someone who has long COVID…At the very least you are informing them that this is an important issue for you and maybe making them think twice. 🙂
WASHINGTON — “The federal government has burned through more than $1 billion to study long Covid, an effort to help the millions of Americans who experience brain fog, fatigue, and other symptoms after recovering from a coronavirus infection.
There’s basically nothing to show for it.
The National Institutes of Health hasn’t signed up a single patient to test any potential treatments — despite a clear mandate from Congress to study them. And the few trials it is planning have already drawn a firestorm of criticism, especially one intervention that experts and advocates say may actually make some patients’ long Covid symptoms worse.
Instead, the NIH spent the majority of its money on broader, observational research that won’t directly bring relief to patients. But it still hasn’t published any findings from the patients who joined that study, almost two years after it started”
https://www.statnews.com/2023/04/20/long-covid-nih-billion/
What makes you think they will do any better with another billion?
Because, if you read the blog again, 🙂 you’ll see this is the antidote to RECOVER. It’s specifically written so that the RECOVER fiasco doesn’t happen again. It’s led by someone who has shown a commitment to these fields and who is advised by experts and patients in these fields.
The people who wrote this bill know how bad RECOVER is.
AND don’t give up on RECOVER! Big initiatives have a way of going bad at first and correcting later on. The National Cancer Centers were a mess at first. RECOVER is starting to do that with the open treatment conference coming up and with Bertagnolli showing interest hopefully we’ll see more steps in that direction.
Hi Cort,
In 1984, two immunologists diagnosed me with Chronic Encephalopathy & (HIV negative) Immune Deficiency, but that was after I had been sick since 1982. This diagnosis later morphed into ME/CFS when I began to see Dr.Paul Cheney.
I also have had Covid three times, twice last year. Heart and blood pressure problems followed the second bout of Covid for which I took the useless Paxlovid. The last time I had Covid, I refused to take Paxlovid and was given another antiviral which worked much better so I didn’t seem to get worse this time. But, I am still suffering with problems from the first bout.
We have spent hundreds of thousands of dollars in uncovered medical costs.
The treatments that have helped me have not come from any big studies and many I have found through my own research.
Have you ever lobbied? I have and it puts a whole new spin on how our government works.
My experience involved a drug that caused thousands of children to be born with partially missing limbs.
When I met with a senator from our state (who had to see me because I was a constituent), I showed him a book with pictures of hundreds of children who all had missing hands and partial arms. Their mothers had all taken the same drug during pregnancy. The senator was sitting behind a massive desk. His comment was, “that is an interesting social problem. What do you expect me to do about it?”
Whistleblowers from the FDA told us that there was a problem with this drug approved only for morning sickness in pregnancy.
Thanks to intervention by former Surgeon General C. Everett Koop, we did get this drug off the world wide market after ten years of really hard work.
Congress did nothing.
The odds of this getting passed is a moonshot. I watched this committee meeting on CSPAN and none of the very few (6) senators got anywhere with it.
That Solve ME link has been published for a while now and produced no impact.
Sorry for the dose of reality.
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“Where there’s hope, there’s life. It fills us with fresh courage and makes us strong again.”
-Anne Frank
Thank you Cort for providing us with news, hope, empathy, and encouragement throughout the years. 📰 🙏 ❤️