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Maybe one on Replication in ME/CFS. (Gather interest in better protocols and more replication attemps). I agree with @hotblack on having ones about severe ME and @Utsikt about negative findings. Maybe also one on Long COVID and Post-COVID ME/CFS. As in looking at the construct of long covid...

The author. Diane O‘Leary made a comment on Emily Mendenhall‘s substack (where Emily talks about receiving legal threats from Wessely). She reveals she had a similar experience of Wessely being put as a reviewer on this piece and legal quabbles.

Surprised they didn’t call it a landmark study. (sorry)

But thats exactly what SLAPP means? I’m not in the UK anyways? I just personally like to learn terms for things if they exist because it helps me conceptualise and name things easier even if its just for my inner memory ahah. I assumed I should share the concept on the thread incase others...

Perhaps these researchers are having fun making puns but to me it just looks like they had a broken caps lock key lmao. The random capitalisations look a bit ridiculous.

Oh I agree. Its not a law as such. If it was a law the concept probably wouldnt need to exist. I’m just more interested in having a name for this silencing behaviour Wessely used. Im absolutely clueless as to fignting it I think I should be the last person consulted on that front. More...

I’m not particularly interested in the legal particularities. Just that there seems to be a useful concept that includes frivolous lawsuits as a tool of silencing through the threat of long legal cases (ie. high fees). I think that concept is useful for us to recognise if there is a pattern of...

I’m not exactly sure I understand? Wikipedia is generally written from a Us centric perspective. But SLAPP seems a specific concept intended to describe the behaviour of suing to silence criticisms by threatening long legal battles. I think it’s agnostic as to the specific legal...

I’m not sure where you got that impression? The article has a UK section where it talks about SLAPP in the UK? https://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation?wprov=sfti1#United_Kingdom

By the way there is a term/concept for this which might be useful for us. SLAPP — Strategic Lawsuits Against Public Participation From wikipedia https://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation?wprov=sfti1#

Sorry to hear that. I hope the pain isn’t too bad! :hug:

He has contacts and friends. QMUL was willing to bankroll I think it was atleast 100k probably much more to prevent the release of PACE data. I’m quite sure he was involved in that. Edit: Changed from “his university” to the uni name since upon second thought im not actually sure it was his.

I think there is a case series on severe people planned. I don’t want to ping them/bother them, so I won’t but I believe VRT mentioned it a couple times.

Probably fair play award as well. Given how that was handed out at AFCON :laugh:

I think severe can simply be conceptually defined as same disease, lower capacity to do things without triggering PEM. There is no agreed upon threshold, the line between severe and moderate can go anywhere from bedridden to housebound. Sensory problems are definetly more common in pwSevere...

Glad to see that in an abstract. As someone who literally can’t speak or be spoken to because they trigger enormous PEM. I’d always found that this was largely never mentioned in anything “official” published.

I’m having trouble finding the official S4ME link for the French translation of the PEM Factsheet. Could anyone point me? thanks.

Never has been. Ah but honestly recounting the mistakes I’ve made is slander! Wessely has played the institutional game like a pro. Contacts everywhere.

Thanks for sharing this @BrokenBeaktheBrave I specifically web archived one of the threads she says Wessely threatened to sue. For future proof if screenshot is not enough. https://web.archive.org/web/20260118190121/https://bsky.app/profile/emendenhall.bsky.social/post/3mcpno2gpi22v

That alone means this research may aswell go in the bin. We should probably have a thread for this nonsense questionaire.