Congress Approves Over a Billion Dollars to Study Long-COVID: Implications for ME/CFS - Health Rising (2024)

Emily Taylor of Solve ME/CFS Initiative reported that Congress has approved $1.15 billion (yes that’s a billion with a “B”) for the NIH to fund long-COVID research and clinical trials. $100 million will specifically be used for the rapid acceleration of diagnostics.

The funding is going to the Office of the Director at the National Institutes of Health (NIH). The NIH has just under 3 years to use the money. I have a feeling they will find a way.

Update! There is some controversy over how much funding will go to the long haulers or how much is devoted to long-term studies of COVID-19. Emily has replied that she’s in close touch with legislators and lobbying groups who report that the funding will be for the COVID-19 long haulers. Time will tell but my take is funding for “long-term studies” of COVID-19 is most likely the same as funding for long COVID. The money needs to be used within less than 3 years – which is actually less time than usual for a large NIH funded study – yet those NIH grants are never referred to as long-term studies. That suggests to me that the money is intended for long term studies of the impact of long COVID.

We’d hoped the tragedy of the long haulers would amount to something, and it has. We’ve always thought that COVID-19 was presenting a once-in-a-lifetime opportunity for ME/CFS. This bill presents the promise of the fulfillment of that opportunity.

Much is unknown. Emily Taylor, who led the charge for the bill, stated that “additional details about the complex weekend budget agreements are slowly emerging from Congress. We’ll have a full ME/CFS budget breakdown for you in the coming weeks.” What we appear to know right now is a ton of money will be spent – much more than has been spent, in total, on ME/CFS in over three decades – for the NIH to study COVID-19 long haulers over the next three years.

Effects on ME/CFS

The effects on ME/CFS could be immense. It should be noted, though, that the long haulers contain a wide variety of patients – from people with lasting heart, or lung, or kidney, or brain damage – to people with ME/CFS and other diseases. This means that researchers of all ilk will surely descend on this new pot of gold. We’ll know more about the bill in the next couple of weeks. Here are some guesses about its effects on ME/CFS.

ME/CFS researchers and ME/CFS itself will be in the mix. ME/CFS researchers, after all, have done more research into, and have produced a body of knowledge about a common kind of post-infectious illness, that no other disease group can replicate. Plus, we have an established post-infectious disease cohort to use as a control group.

One way or another, funding – whether it’s ME/CFS-specific, or from the use of ME/CFS patients as control groups – should increase, and so should chronic fatigue syndrome’s status both as a research topic and as a disease at doctor’s offices.

Besides specific ME/CFS funding, we will learn a lot how an infection can – even after the pathogen has been vanquished – turn into a chronic illness. Many diseases from ME/CFS, to fibromyalgia, to POTS, to MCAS, to autoimmune diseases and neurological diseases have an interest in this. Avindra Nath, for instance, has speculated that Parkinson’s may be being triggered by the coronavirus. Ian Lipkin was surely thinking about diseases like multiple sclerosis when he said it will take decades to uncover the full effects of the coronavirus. This research could be a boon for so many diseases. After this enormous surge in funding, post-infectious disease research should finally become a thing.

Given the similarity in symptoms between ME/CFS and many of the long haulers, an intense focus on them could tell us much about ME/CFS, including new treatment to try.

Strategic Approach Pays Off

Winning Requires Strategy: Thomas Sheridan, “Helping the Good to do Better: A White Hat Lobbyist’s Winning Strategy From the Front Lines of Social Change”

One thing we do know is that a strategic approach works.

While many were surely involved in a bill of this size, according to Thorn Run Partners, a DC lobbying group, the Solve ME/CFS Initiative’s “efforts were instrumental in bringing Congressional attention to the issue”. Thorn Run particularly cited Solve M.E.’s efforts with the Energy and Commerce Committee and the appropriations leadership.

This suggests that four years of dedicated legislative work has paid off. Four years of doing the groundwork to establish relationships and build connections. Four years focused on building allies and enrolling others in our cause. Being there year in and year out.

Congratulations again to Carol Head for hiring the first full time professional advocate for ME/CFS. This is one of the fruits of her decision to take a long-term, strategic approach to advocacy.

Critical Year

It’s been an all COVID-19 year. Emily Taylor and the Solve ME/CFS Initiative spent the last year educating legislators about post COVID-19 and ME/CFS. First, they devoted what turned out to be their biggest advocacy day ever to informing legislators about the connection.

Then, they got over 50 House representatives to sign on to H.R. 7057 – the first ever attempt to get Congress to take a hands-on approach to NIH funding for ME/CFS. The bill titled “Understanding COVID–19 Subsets and ME/CFS Act” provided another opportunity to get legislators on board about the link between COVID-19 and ME/CFS.

Then came the recent letter to Chuck Schumer and Mitch McConnell. The powerful letter stated that if trends hold, “an estimated 3.2 million Americans will be temporarily or permanently disabled by post-COVID-19 symptoms over the next 12 months”, making it imperative to “immediately expand” the NIH and CDC programs to diagnose, study, track, and treat the lasting health impacts of COVID-19 and long COVID.

ME/CFS was in the mix throughout. The letter strongly encouraged the new programs to coordinate with researchers, doctors and stakeholders in the ME/CFS, POTS, dysautonomia and mast cell fields. It noted that 27% of those infected in the last SARS epidemic qualified for a diagnosis of ME/CFS four years later.

It asked for $60 million in post-viral research into ME/CFS, dysautonomia, and/or MCAS over the next two years, $110 million to expand and build long COVID Collaborative Research Centers (CRCs) and Centers of Excellence (CoEs), and $3.5 million to educate doctors about long COVID, using lessons learned from ME/CFS, dysautonomia and MCAS.

“Building a strong coalition is intrinsic to success on a large scale”. Thomas Sheridan, “Helping the Good to do Better: A White Hat Lobbyist’s Winning Strategy From the Front Lines of Social Change”

Emily Taylor has talked about how developing strategic relationships with organizations outside the ME/CFS field could come in handy later. That tactic appears to have paid off when numerous organizations with clout – including some with a lot more clout than we have – joined the letter.

Getting the National Health Council on board must have been big. Over a hundred and forty organizations participated in this 100-year old organization committed to “provide(ing) a united voice for the 160 million people living with chronic diseases and disabilities”. Other organizations focused on women’s health were included:

• The National Organization of Women (NOW) – With hundreds of chapters, NOW is the largest feminist organization in the U.S. One of its core commitments is to support women’s health issues.
• The Nurse Practitioners in Women’s Health (NPWH) – NPWH has, for the past 40 years, been fighting to improve women’s health.
• The American Medical Women’s Association has been committed to the advancement of women in medicine and improving women’s health for over 100 years.
• Healthy Women’s mission is “educating women to make informed health choices”.
• Hadassah is a 100-year-old organization that has an “unwavering commitment to women’s health and well-being”.

For the first time (and hopefully not the last time), Dysautonomia International, the Mast Cell Disease Society and the American Dysautonomia Institute joined the effort. So did two post COVID-19 organizations: the Body Politic and the COVID-19 Long Hauler Advocacy Project.

ME/CFS organizations joining the effort included MEAction, the Open Medicine Foundation, the Bateman Horne Center, the Institute for Neuroimmune Medicine, Pandora, Mass ME/CFS and FM, and the Minnesota ME/CFS Alliance.

Others

MEAction and Solve M.E.’s outreach to the media, which resulted in powerful articles in large media outlets on the long haulers, surely helped – as did the now probably hundreds of articles that have been published on the subject. Both groups also quickly reached out and established connections to long-hauler groups. Both produced long-hauler webinars, as well. All these efforts increased our visibility and impact.

Conclusion

COVID-19 presented a huge opportunity for ME/CFS – an opportunity has only thus far been partially fulfilled.

Congressional approval of a ton of money – more money than any of us, I think, expected – for long-COVID research at the NIH potentially changes everything. It should mean large, powerful, comprehensive long-COVID studies are coming. I would expect ME/CFS researchers and patients to be involved in some ways. ME/CFS’s status as a disease both at the research and the clinical level should rise. We should learn much more about how an infection gets turned into a chronic disease. Besides ME/CFS, this research could impact many other diseases.

The Solve ME/CFS Initiative’s outreach work was instrumental in bring the COVID-19 long hauler issue to the legislators. Both they and MEAction also reached out to media and to the long haulers. We’ll know more over the next couple of weeks about the details of the bill, but the potential payoff for ME/CFS is huge.

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