Long COVID Treatment Guide (Patient-Led Research Collaborative & RTHM)

Obviously, there is a lack of scientific evidence to support these options, and there is a conflict of interest. I'd like to emphasize that such suggestions as I quote:

“Clopidogrel 75 mg is typically dosed once daily, and may be combined with aspirin and/or apixaban after very careful consideration of the risks associated with dual or triple therapy.”

are not only unevidenced but clearly dangerous for patients.

I can't help but mention the Paxlovid suggestion. There is no evidence of replication in people with LC. Two CTs failed. Why? Just why?

I believe the majority of clinicians don't use such sources of information in their clinical practice. Rather, it is a realm of moneymaking private clinics and we can't change it.

From my perspective, the bigger issue is that the same people and organizations who write such guides as the Mount Sinai guide or this one have influence over political decisions in the realm of ME/CFS and Long Covid. There is no funding for ME/CFS research. RECOVER-TLC is a total failure. After all, why do we need studies and trials if there are 41 options which are “especially helpful for…”?
 
I didn't realise that Binita Kane is part of all this. She's not listed on the Patient-Led Research Collaborative website. It's certainly not a good look for any medical doctor to be associated with that Long Covid Treatment Guide.

The webinar is on June 12 for most of the world.
 
Hutan said:
I didn't realise that Binita Kane is part of all this. She's not listed on the Patient-Led Research Collaborative website. It's certainly not a good look for any medical doctor to be associated with that Long Covid Treatment Guide.
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Maybe they wanted to have an unrelated doctor on the panel who prescribes what they preach? They'll probably clarify the relation while introducing Binita at the webinar.

Binita interviewed Jennifer Curtin in 2024.
 
Felis Catus said:
I haven't watched it. I don't know if anyone is interested in watching it but I thought I could post it for the sake of having it documented here.
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I looked at the first half hour. It is terrible, and quite frightening that there are medical colleagues behaving like. It is pseudoscience central. Basically human beings flailing around trying to justify their desire to be shamans with magic potions. It starts off with the usual incantations. It claims not to be giving advice yet it is quite clearly giving advice, at least to other primary care shamans to join in with the snake oil festival.

To turn this into a Monty Python pastiche all you would need to do is to exaggerate some of the facial expressions and accents to let the audience know that this is parody.
 
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I looked up Zachary Spiritos. Interesting to see that he is both heavily in to the 'biomedical' folklore about MCAS and EDS but also into the functional gut-brain axis folklore in which of course it is just your mind/brain telling your gut to have pain.

And both are of course now the received wisdom for the British Society for Gastroenterology and presumably the American version as well. It beggars belief that such a muddle of ideas could ever be taken seriously.
 
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