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Can't they just give it a bloody rest? Every single day another paper is churned out, every time the same shoddy research practices. They are trying to bury us beneath a blizzard of bad science.

Is donation still necessary/possible? I want to put a message to family about xmas fundraiser and don't know whether to do this or Chris Ponting's lab/A4ME now

thank you, this is helpful

I think JE et al mentioned IVIG as possibly being worth trialing by researchers in their hypothesis paper, but from what I've heard it's so exhausting and gives a lot of side effects I think it's wise not to risk PEM without any evidence of efficacy.

This sounds interesting- is there anything to it?

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...