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I'm sorry, that must have been awful. I started having unpleasant symptoms at 19 and was totally gaslit over them. It really messed me up and as you say made me depressed and insecure. Afaik I didn't develop ME proper until 26 but that framework that was laid when I was younger was what was...

I don't quite follow what this is suggestive of - that LLPC depletion isn't the way dara works for ME (if it works)?

I think the desperation to shove ME/CFS back in the psychobehavioural/functional box shows how important it is to these people's whole house of cards. If (when) ME is proven physiological, they are going to have a much harder time arguing that any of their bullshit is real. Because if they were...

It absolutely is not nonsense. It made me doubt myself so much I did what they said and got much worse. The same happened to many other people I know or have encountered online. I agree that it making everyone else doubt us is at least an equally big problem, but many people are harmed...

What is currently the best way for people in the UK to donate? Is @Joan Crawford's fundraiser still active? Or should i direct them to the English language ME fund page?

The phrase 'during covid' never fails to induce steam venting from both my ears.

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.