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What an original idea, nobody's attempted that before! Truly revolutionary!

How are people feeling about this study now the dust has settled? From my perspective it seems like we are no closer to understanding PLs methadology. I am interested in the (non Ampligen) repurposing opportunities, but more so in what these data can show us combined with other genetic data...

What part of his work is he claiming is replicated here?

Functional BS aside I have noticed a much higher proportion of neurodivergent folks in LC support groups and ME spaces. There may well be a real connection here. But this seems to be the approach of associating FND with autism to infantalise the patient group.

That's concerning. I had a scan of Billy Hanlons Bluesky thread and Nath's rationale seems to be something vague about viral remnants. And something about B cells not maturing.

It does say on wiki Checkpoint inhibitors effect/inhibit T Cells - is there some chance they could work in LC/ME by that mechnism? I remember you're not a fan of this drug being tried but just wondering.

Took him long enough... I can't remember what his rationale for this drug is.

This is very true. This same ignorance is what enables many of them to give ME/CFS patients harmful advice and negligent care. They think patients like me who are incredibly unwell are just being dramatic. Because nobody could possibly be this disabled from chronic fatigue, could they? I...

I think these two quotes very aptly highlight the degree of evil that has been committed by the BPS clinicians. I hope you're right.

That is not what I am saying at all. I don't doubt your good intentions. I am saying that the physicians who mistreated me, and the vast amounts of physicians who agree with them that pwME are delusional hypochondriacs, would laugh at that anecdote - some doctors have a very cruel sense of...

This is great news! This imo is one of the most pernicious examples of biobabble. Why is it being blindly accepted before we have any idea if it's true? It could be, but it could be that ME/CFS is mostly one disease with the same pathway requiring the same treatment. Or two. This idea stems...

Open label? Open label? What is the point of an open label phase 3 trial? Surely that's just a very large pilot? And this study was supposed to report in 2023. What exactly is the hold up? I was hoping we'd at least get good data on famotidine/loratadine in an RCT. Oh well. Maybe the...

Agreed.

This article is good, although I think if it's intended for doctors the anecdote about the teeth is the exact sort of thing more callous doctors who believe we're all hypochondriacs tend to laugh at. It was good that the conclusion highlighted DecodeME. And the section on disengagement from...

It is insane to me this trial has taken what - four years? Without adding other drugs. These are very basic drugs, and if they help pwLC we should have had that info years ago and moved on. There should be a Stimulate ICP anti cd38 or even JAK inhibitor trial in the works. There should have been...

Oh, it's just an abstract! I hadn't noticed.

Does anyone knowledgable have any opinions on whether this paper in fact strengthens the groups previous findings or whether it repeats the problems with the previous papers at a larger scale?

Would this count as a 'large scale investigation' as far as patch clamping goes then?

https://immunitybio.com/immunitybio-announces-phase-2-study-of-anktiva-in-patients-with-long-covid/ Seems like theyre thinking along viral persistance lines Or are you trying to boost your NK count for Daratumumab?

That's interesting and a little dismaying as I had been entertaining a bit of hope that these findings might be relevant for ME/CFS too. Especially in light of the JAK-STAT trials. On a related note, I remember you saying that if something you were speculating about had merit then hopefully...