Stat News: NIH must address the twin crises of long Covid and ME/CFS — together

SNT Gatchaman

SNT Gatchaman

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Lipkin and Ansell

The RECOVER Initiative offers an historic opportunity to transform post-viral illness research

https://www.statnews.com/2025/02/04/recover-initiative-nih-long-covid-me-cfs-post-viral-illness

RECOVER has the potential to be a model for innovative, patient-centered research. But for that to happen, NIH must listen to Congress, the scientific community, and the millions of individuals waiting for hope. Including ME/CFS within RECOVER’s scope is not just an opportunity — it’s an imperative. With hundreds of millions in funding and the largest-ever cohort of people with post-viral illnesses, RECOVER could provide the answers that ME/CFS researchers have sought for decades. NIH must seize this moment to lead.
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A good article at the right time can make a difference. It's a good article, and I guess we'll see if it is the right time to be calling on the NIH to 'seize this moment to lead'. The people at the NIH might possibly be thinking about other things right now.

But, when I see this coming from Lipkin, I feel, ... how to say it? I recall the times when we have been frustrated to hear that he has samples that could be analysed, but it never seemed to be a priority. Sure, funds probably weren't easy to get, but Lipkin has an enormous profile, he has clout. I can't help but feel that if finding out about ME/CFS had been really important to him, he would have progressed his work on ME/CFS somehow and helped change opinions in the NIH.

Is it churlish of me to expect more of a man who has at least done something, and has bothered to co-author this article? Probably. And I'm not well informed, perhaps he has done lots behind the scenes, perhaps we would be in an even worse position without his work.
 
The ME Association has covered the news

America: ‘Virus Hunter’ Ian Lipkin calls for Long Covid and ME/CFS to be studied together
February 6, 2025

“ME/CFS and long Covid share profound similarities, including post-exertional malaise, cognitive dysfunction, sleep abnormalities, and immune dysregulation. These two disorders overlap in biological mechanisms, including neuroinflammation, mitochondrial dysfunction, and impaired autonomic regulation…”

Professor Ian Lipkin, Columbia University

https://meassociation.org.uk/2025/0...long-covid-and-me-cfs-to-be-studied-together/
 
Including ME/CFS within RECOVER’s scope is not just an opportunity — it’s an imperative.

Hard agree. Even if ME/CFS & LC turn out not to be exactly the same, they clearly have a huge overlap, and resources will be much more effectively spent studying them together.
 
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Echoing these concerns, Congress recently urged NIH to expand RECOVER’s scope to address the full spectrum of long Covid symptoms and evaluate therapies for overlapping conditions such as ME/CFS. Despite these clear directives, NIH leadership has sent mixed messages. While some officials have acknowledged the shared biological mechanisms between long Covid and ME/CFS, others cite limited resources and narrow mandates to justify excluding ME/CFS from RECOVER studies.
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This hesitation is both scientifically shortsighted and economically imprudent. ME/CFS and long Covid share profound similarities, including post-exertional malaise, cognitive dysfunction, sleep abnormalities, and immune dysregulation. These two disorders overlap in biological mechanisms, including neuroinflammation, mitochondrial dysfunction, and impaired autonomic regulation. Integrating ME/CFS into RECOVER would allow researchers to study these shared pathways, accelerate the identification of biomarkers, and develop therapies that benefit millions of Americans living with these devastating conditions.
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This hesitation is both scientifically shortsighted and economically imprudent. ME/CFS and long Covid share profound similarities, including post-exertional malaise, cognitive dysfunction, sleep abnormalities, and immune dysregulation. These two disorders overlap in biological mechanisms, including neuroinflammation, mitochondrial dysfunction, and impaired autonomic regulation. Integrating ME/CFS into RECOVER would allow researchers to study these shared pathways, accelerate the identification of biomarkers, and develop therapies that benefit millions of Americans living with these devastating conditions.
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Actually, reading the article again, I think it is not clear.

It doesn't define Long Covid, or recognise that formal definitions include everything but the kitchen sink. As in, they allow any persistent symptom and so cover overt tissue damage, damage caused by ventilation, ME/CFS compliant constellations of syndromes, collections of symptoms that are a bit like ME/CFS but not quite, new onset health conditions that might not even have much to do with the Covid-19 infection.

The article talks about Long Covid and ME/CFS as separate conditions, separate disorders. It suggests shared biological mechanisms between Long Covid and ME/CFS. But there will not be a shared biological mechanism between ventilation injury and ME/CFS. And some Long Covid actually is ME/CFS - people meet the diagnostic criteria and we can't attribute their illness to any known pathology.

The article seems to be calling for pre-Covid-19 ME/CFS cohorts to be included in Long Covid trials.

I think more important than that is a call for stratification of Long Covid cohorts - "Long Covid" is way too broad. I would like to see a recognition that ME/CFS is actually a subset of Long Covid. If a study was of post-Covid-19 ME/CFS, carefully characterised, I think that is good enough. If researchers find something with that group, there will be time enough to do the study in a pre-Covid-19 ME/CFS cohort.

I think the article just adds to the confusion.
 
Hutan said:
I think the article just adds to the confusion.
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I agree. The whole thing is underwhelming.
'High profile' biomedical science seems increasingly just to be re-arranging the verbal deckchairs on a ship whose crew don't really know where they are supposed to be going.

Lipkin's group provided some useful negative findings on viruses and cytokines about ten years ago. That is all that I am aware of.
 
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