Trial By Error: Interview with Journalist Betsy Ladyzhets about NIH’s Flawed $1.2 Billion RECOVER Program for Long Covid

By David Tuller, DrPH

Betsy Ladyzhets is an independent health, science and data journalist who has been covering the coronavirus pandemic, including long Covid. While serving as a journalism fellow at MuckRock, she co-wrote an investigative report for STAT, a well-known health and medical news site, about the US National Institutes of Health’s problem-plagued $1.2 billion long Covid program, called RECOVER. The story was published last month. Betsy and I recently spoke about the article and about the NIH’s flawed approach to long Covid.

5 thoughts on “Trial By Error: Interview with Journalist Betsy Ladyzhets about NIH’s Flawed $1.2 Billion RECOVER Program for Long Covid”

  1. Thank for this, Betsy and David. It was most informative. Spending so much (47%? is that for real?) of the total funding on observational studies seems ridiculous to me. I’m left wondering though – what research is this program doing into the mechanism of Long Covid? If there are (seemingly abundant) observational studies at one end and (apparently quite limited) clinical drug trials at the other, is anything happening in the middle to try to determine what the biological mechanism/s causing Long Covid might be?

  2. I should add – I do appreciate that observational studies could help to determine the mechanism behind Long Covid too, but the focus thus far with them seems to me to have been on reaching some definition for Long Covid and weighting symptoms. (But maybe I’ve got that wrong?) While it’s important to have a concrete definition/set of diagnostic criteria for a disease that people agree on, (have any biomarkers or potential biomarkers been reported or discovered to date?), time is of the essence when so many people’s lives are being affected. I hope we’ll soon start hearing the results of observational studies that are seeking to find biomarkers and to elucidate the biological mechanism that causes such debilitating symptoms.

  3. “… is anything happening in the middle to try to determine what the biological mechanism/s causing Long Covid might be?” – CT

    Great question CT.

  4. I understand from this that the research so far has identified 5 categories of symptoms in relation to Long Covid – autonomic (POTS etc), viral persistence, cognitive, sleep disruption and problems with exercise/fatigue. I’ve not looked into the RECOVER program further, but I imagine that people in all these categories might suffer fatigue, with those in the latter category suffering post exertional malaise perhaps. That doesn’t mean that the people in the other categories don’t suffer post exertional malaise. I suppose what I’m getting at is that fatigue is bandied around as a single symptom in much the same way as saying that someone has a headache, but any decent neurologist knows that headaches come in many different types with different causes and by listening to the patient describe the headache it’s usually not too difficult for them to decide which type of headache the patient has. (This letter to the Journal of the Royal Society of Medicine springs to mind - .) Separation of fatigue into different definable fatigue syndromes seems to have passed researchers by – many different types of fatigue are bundled together into one symptom.

    I’ve always thought that my presentation of fatigue was nothing like that suffered by patients with ME. All Long Covid patients could suffer ME-like fatigue, or a section of them might. Patients from all the 5 RECOVER categories could be suffering from ME-like fatigue, or only a proportion of them might be. But I think that the research is seriously deficient if patients aren’t asked anything past – ‘do you suffer fatigue?’ or ‘how bad is your fatigue?’ or ‘is it induced by exercise’? I think we probably need to have definable fatigue syndromes and then researchers need to determine as best they can the fatigue type for each patient. Sorting Long Covid into these 5 categories may not be entirely wrong, but I doubt that it is enough.

  5. And assuming that viral persistence is reliably determinable, (as it should be if it’s going to have a category of its own), then wouldn’t it be sensible to use this a first stage classifier/distinguisher of Long Covid patients? Having/not having virus persisting in your body sounds like a fundamental difference to me. It’s surely pretty major if someone’s body hasn’t been able to rid itself of the virus and would perhaps suggest problems with the immune system that other Long Covid patients don’t have? Once that was done, patients of both sets could be categorized further according to symptom profiles and compared.

    I’m only going by what I heard in this interview, but it sounds to me like the observational research may be missing the mark. Observation is very important, but I think it needs to operate at a high level with great attention to detail and in a scientific and logical way. The right questions need to be asked of patients and a logical and coherent classification pathway worked out to categorize patients by, otherwise we’re likely to end up with an uninterpretable mess.

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