RECOVER helping hand

The RECOVER Initiative needed a helping hand – and got one.

Recovering RECOVER?

They had to do something. With the money running out next year, the NIH and its RECOVER Initiative were looking at pulling the plug on over 80 clinics and kissing the $1.15 billion Congress had invested in the program goodbye – all the while hardly making a splash in the research arena.  Lacking more funding, it looked like the RECOVER Initiative was about to go down as one of the biggest white elephants in the history of medical research.

A recent webinar on RECOVER’s observational studies was not promising. While the presenters were clearly sincere about their efforts and the condition in general, their outlook for the rest of the year was focused on things like characterizing symptoms, finding subsets, understanding demographics, and the like. No promises regarding getting at the roots of the illness were made.

Even the publications the Initiative pointed to as signs of success – that severe cases of COVID can turn off genes; that people with HIV and long COVID are worse off; that the virus can persist in the tissues for many months; that there may be changes in the immune system – only illuminated how far the RECOVER Initiative is at this point from being a leader in the field.

In a kind of, “Give us a break guys, this is really difficult stuff!”, in its report about the new monies, the NIH referenced how difficult infection-associated chronic conditions such as ME/CFS and Post-Treatment Lyme Disease Syndrome have been to understand. In a statement that will only gall people with ME/CFS, the NIH stated, “Despite years of research, the underlying biological mechanisms for …ME/CFS… have not been identified. Using ME/CFS with its $13 million/year NIH funding to explain why the NIH’s $1.15 billion RECOVER Initiative had produced little thus far seemed more like an act of desperation than anything else. (And yes, NIH funding for ME/CFS fell about 20% last year…)

Before anyone gets too excited about the NIH suddenly turning a new leaf and funding long-COVID research, the money is not coming from the NIH. It’s being taken from the Public Health and Social Services Emergency Fund, which received huge infusions of cash from Covid-19 relief legislation, and was given to the NIH’s RECOVER project by the Biden administration. It appears, in other words, that the RECOVER Initiative lucked out. That money will not be available in the future.

Success the Only Option?


500 million dollars will go to the RECOVER Initiative through 2028.

Despite its failings thus far, and its weird and late-to-the-party treatment trials (only 4 of which are underway), it’s seemingly ultraconservative approach, the RECOVER Initiative is still an impressive program that everyone with long COVID or ME/CFS or other post-infectious diseases should desperately want to succeed.

RECOVER is an effort by the largest medical funder in the world – the National Institutes of Health – to do it right the first time. Every time I look at a Systematic Review of a drug or a disease, I see the same words again and again – small sample sizes, lack of standardization, etc., that preclude the authors (even after 20 or 30, or more, studies) from drawing a solid conclusion. That’s what the NIH is trying to prevent happening with long COVID. Since this has never been done before, it’s perhaps not surprising that the early going has been so rough.

If the RECOVER Initiative succeeds, it will illuminate clear pathways of pathology that provide biological targets for treatments – pathways and treatments that can then be assessed in other post-infectious diseases. In other words, it’s a once-in-a-lifetime opportunity for diseases like ME/CFS. Whatever stumbles the RECOVER Initiative has had, it still, more than any other effort (and it’s not even close), holds the potential key to solving ME/CFS and similar diseases. If it fails, people with ME/CFS fail too – it’s as simple as that. RECOVER surely needs to be tweaked in some ways, but most of all it just needs to keep going.

Ditching RECOVER at this point would throw a dark cloud over long-COVID research, provide fertile ground for naysayers who believe long COVID is made up, and destroy the effort before it really got started. Given that, it’s very good news that the Biden administration gave it a substantial infusion of funds. This is the first time, after all, that an administration has pledged significant monies for post-infectious disease research.

Advocates say more is needed. The Long COVID Moonshot is asking for a billion dollars a year in funding. MEAction reported that the recent Congressional HELP committee hearing on long COVID was packed and it wasn’t just about long COVID. Dr. ZIad Al Alyly gave an impassioned presentation about the need to create an NIH Institute to study long COVID, ME/CFS, and other post-infectious diseases. In a similar vein, Michael Peluso told Stat News, “even more funding would be needed to meet the scope and scale of long Covid and related illnesses”. This new commitment can only support our efforts to build a post-infectious disease Institute at the NIH.

RECOVER may be focused on long COVID, but in the end, it’s really about all of us.


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