Health Rising by Cort Johnson
Health Rising by Cort Johnson
The Long COVID Moonshot Blasts Off (Without ME/CFS/FM, Lyme, POTS, etc.)

Check out Geoff’s narration

The Long COVID Moonshot proposal recently introduced by Senator Bernie Sanders is something that everyone with a post-infectious disease – and that includes people with long COVID, chronic fatigue syndrome (ME/CFS), post-treatment Lyme disease, postural orthostatic tachycardia syndrome (POTS), and even many people with fibromyalgia should want to succeed.

Why? Because if you take away the names, they all look like the same disease. The main symptoms (fatigue, pain, post-exertional malaise, cognitive, and sleep problems are identical. Beyond that, though, even the research findings are similar and that’s what’s so darn encouraging. Check out some of the similarities:

The proposal asks that the NIH spend $1 billion a year for ten years on long COVID. That’s real money. That’s long-term funding. That’s a real chance for long-COVID patients.

Just don’t expect the NIH to pick up the slack if this bill doesn’t pass. The NIH ignored long COVID until Congress gave it money to produce the RECOVER program, and then continued to ignore it. Long COVID, like ME/CFS, for instance, is still homeless at the NIH. No infrastructure has been built to support it – and that’s the kiss of death with funding.

The problem is that long COVID shares with ME/CFS, fibromyalgia, post-treatment Lyme disease, mast cell activation syndrome (MCAS), migraine, IBS, and others a suite of characteristics that have been kryptonite for the NIH. These are all complex, multi-systemic diseases that primarily affect women, are largely invisible to the eye, cause enormous amounts of pain, fatigue, and disability, and tend to strike people in the prime of their lives, but rarely cause death.

Despite the fact that they are common – each affecting millions of people – they are also the poorest funded suite of diseases in the NIH.


Millions of people have been waiting for decades for the NIH to help out.

One thing must be made very clear. Please do not think that if you’re a young strapping adult and suddenly can’t work –  or if there are a million young strapping adults who suddenly can’t work – that that means anything to the NIH. It means zilch. The NIH does not care how well provided a disease is or isn’t. It has no interest in the fact that millions of people are being left adrift. Those facts simply don’t register for it.

Fibromyalgia is currently getting $13 million in funding for 10 million patients. ME/CFS is getting $13 million in funding for 3-7 million patients. That has been going on for decades. Two generations of patients have been on the waiting list to get adequate NIH funding and there’s no reason to expect that to change. Absent effective congressional advocacy, the most likely future for both is that they will still be getting $13 million/year in 20 years – and another generation will have lost out.

That’s the mess that long COVID has stepped into, and that’s why congressional advocacy is mandatory if any of us expect to get an answer for any of these diseases anytime soon. Do we want to win the long-COVID battle in 5 or ten years, or 30 or 50?

Whether you have long COVID, ME/CFS, FM, PTLDS, or another post-infectious illness, all of us need a long-COVID bill like this pass, and for a post-infectious disease to get the funding it deserves.

Find Out How to Support This Proposal Here 

Missing Pieces

Not that that the bill is perfect. This remarkable coherence of symptoms and research findings is why advocates from a wide array of disease groups are fighting this week to establish an NIH Center for Post-Infectious Diseases and Conditions. The Solve ME/CFS Initiative’s recent white paper, “A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH”, demonstrates how important it is that each of these diseases be studied together in one place.

The Moonshot recognizes that the NIH’s neglect of infection-associated diseases has directly helped create the situation that long-COVID patients find themselves in when they get no help when they go to their doctor’s office.

“Long Covid is one of a number of chronic conditions triggered by acute infection, such as dysautonomia and ME/CFS, collectively referred to as infection-associated chronic conditions (IACCs). The historical lack of
investment in these conditions have in part contributed to the lack of preparation for the current crisis.”

The Moonshot also recommends the establishment of the Office for Infection-Associated Chronic Conditions Research at NIH to study all of them. Senator Sanders’s bill, however, provides funding only for long COVID. It’s the first proposed piece of legislation that I can remember in which the long-COVID community has chosen to go it alone. Every other bill – which the ME/CFS community has rallied around and supported – has had language that included post-viral illnesses. This is a bad precedent.

There is, after all, no reason to think that the historical lack of investment in diseases like ME/CFS, FM, PTLDS, and others that the Moonshot alluded to won’t continue if the long-COVID proposal is passed (in its current form). The neglect has only deepened with the emergence of long COVID: NIH funding for ME/CFS – the disease most associated with long COVID – didn’t rise after long COVID – it fell 20%.

By going it alone, the long COVID Moonshot will be missing the support of tens of millions of people with post-viral diseases other than long COVID. It will also be a party to the continuing neglect that millions of people have suffered from for decades. There’s no need for that. There’s plenty of room in a billion-dollar-a-year bill to include other post-infectious diseases.

Take these poignant statements from Josh and Adam on the Moonshot website:


Next, think about where Josh and Adam are 10, 20, 30, or 40 years without help. It’s understandable that people with long COVID want to focus on their illness but those are the people this bill is discarding and that is a heavy price.  (You can find some of their stories on Health Rising’s Lives Interrupted page.) There’s enough room in this billion-dollar-a-year effort for other post-viral diseases. We don’t need to leave anyone behind.

The fix is so easy and this is the time to do that. Sanders has released a proposal – not a bill and there’s still time to change it. We simply need to insert “and associated conditions” into the proposal. Solve M.E. has created an easy way to support that. Simply sign onto the letter from Solve M.E. President Emily Taylor to Senator Sanders to add “and associated conditions” to the effort.

Sign the Letter Here

and please

Support The Proposal Here 





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