NYT - A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves

SNT Gatchaman

SNT Gatchaman

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A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves
Zeynep Tufekci

https://archive.md/Y2Qdz

Many of the group’s founding members met in online patient support groups in the spring of 2020, when they felt they couldn’t get doctors to take their problems seriously. Some who had scientific backgrounds created a research subgroup but quickly realized that there was almost no useful information available. So they generated their own research, starting with a survey of patients in 56 countries.
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That initial survey, the results of which were published in a scientific journal, revealed patterns and symptoms that the medical establishment had not yet noticed. It is justifiably described by scientists as having put long Covid on the map.
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One baffling long Covid symptom that the survey brought to light was what’s known as post-exertional malaise. For patients who experience it, any exercise, even as little as a 10-minute walk, can lead to pain, profound exhaustion and a worsening of symptoms for weeks, months or longer. But many doctors were attributing this effect to anxiety or depression.
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The group got a big break when Vitalik Buterin, a founder of the blockchain platform Ethereum, made a $5 million donation — in cryptocurrency, of course. A panel of 15 patients with science or medical backgrounds worked together to allocate the money, choosing 10 promising research projects. While the N.I.H. has spent millions of dollars to test such dubious interventions as Zoom therapy and brain games, this scrappy group made swift grants to studies seeking to find root causes and develop viable therapies — not on Zoom.
They’ve already produced a major hit: a study that found a potential biomarker for post-exertional malaise.
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The lead author, Rob Wüst, is a young scientist in the Netherlands who not only studies exercise but also participates in it daily. He told me he had always thought that exercise was good for everyone, even those suffering from a chronic disease. But when he received a call from a long Covid clinician looking for answers, he was ready to jump in. He told me that his work would have come “to an almost complete stop without the Patient-Led funding” because traditional funding sources are so agonizingly slow. Patient-Led, on the other hand, was small and nimble; when the group saw the proposal, it funded the study.
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The medical establishment had not yet noticed, it still has not yet noticed, but it hadn't yet noticed it, too. In fact, it has literally rejected, belittled and mocked. And still does. Stubborn as they are.

But this article, man. It was pitiful on day 1, when this is how it all began, and nothing's changed, only it got more and more pathetic with time. It's pretty much literally how the very name and concept came about: medicine was MIA, so the patients did the work to get them started. Except they fumbled it completely. They're still MIA. At best. Working with the enemy at worst.

Not sure if Zeynep noticed that this is what we have been doing with ME/CFS for decades. And failed miserably, because although sometimes you have to hand people the first steps before they begin to work, here it's just not realistic. The problem is simply too hard, one of the hardest problems medicine has ever faced. The lack of mention in the article suggests: no.
 
It’s good she is bringing attention to Patient Led and the role of the larger patient community in moving the long COVID field forward.

However, it’s not that patients just thought up this “great” idea to start solving the disease. It’s more of a necessary back up plan that the patient community had to enact because the institutions and people who should be helping failed and are still failing to do so. That wasn’t really emphasized enough here.
 
Very good article that highlights the value of PLRC. I didn't know (or didn't remember) that they funded the study on PEM and muscles, which I think was a novel and important one. I'm very grateful for them because the big institutions still simply don't know how to help us.
 
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