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.
 
Jonathan Edwards said:
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.
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I don't understand how MCAS or EDS could ever be regarded as "folklore" by anyone knowledgeable about the reality of those conditions. Actual gut-brain axis research examines the role of GALT and microbial metabolites in neurodegenerative diseases and mental health conditions. Maybe you're referring to the misapplication of those concepts among functional practitioners.
 
cassiopeia said:
I don't understand how MCAS or EDS could ever be regarded as "folklore" by anyone knowledgeable about the reality of those conditions. Actual gut-brain axis research examines the role of GALT and microbial metabolites in neurodegenerative diseases and mental health conditions. Maybe you're referring to the misapplication of those concepts among functional practitioners.
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I am referring to the misapplication of these concepts in mainstream medical organisations like the British Society for Gastroenterology.

But these are indeed folklore concepts in the context of ME/CFS. MCAS is so poorly defined (even the experts cannot agree which of two different sets of criteria should be applied) that is currently meaningless. Allergy, atopy and mastocytosis are well documented but not MCAS. There is no evidence for mast cell involvement in ME/CFS or Long Covid symptoms as far as I know.

EDS is a very real set of syndromes but 'hEDS' is again too poorly defined to be useful. Again, there is no meaningful evidence for a relation to ME/CFS or Long Covid.

There is research on the role of gut products like butyrate on CNS function but 'disorders of gut-brain axis' is a term used by gastroenterologists to imply covertly that there is nothing much wrong and that symptoms are psychosomatic or 'functional'. These are not 'functional practitioners'. They are mainstream gastroenterologists.

Do you have a personal professional interest in this? I am interested to know. I am always prepared to be proven wrong but everything I have seen in this area indicates to me that this is doctors covering up for ignorance in the way they always have. (And yes I am a doctor.)
 
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