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I imagine a much more subdued scene, with reassurances among Trustees that this social media froth will soon blow over, and staff keeping their mouths firmly shut and their heads down while feeling very uncomfortable. I'm guessing the trustees haven't even discussed it yet. The rest of the...

It's interesting, I think, that back in 2019 Riley got away with saying similar things in an article. We protested in forum discussion, but Riley was unrepentant, and clearly learned nothing from what our members explained. Now there are a letter with 1000 signatures, and 3 organisations that...

I'm with you on this, @Yann04. I don't think I feel sicker in terms of severity of symptoms now that I'm housebound and spend a large proportion of my day lying down, compared to when mild and able to work part time. The big difference is in how much activity I can do without triggering PEM. For...

There is further discussion of UK ME organisations on this members only thread.

Further discussion on this trial here: Bias due to a lack of blinding: a discussion

It seems odd to me that the response, such as it is, comes from the ME Connect team who run the helpline, rather than from someone senior in management. Ah, but I forgot, they don't have a chief executive. Why does it make me think this is being seen as us, the signatories of the letter...

Some posts have been moved to: Professor Akiko Iwasaki and the Yale School of Medicine research on Long Covid and post infection syndromes

That's very good news. Getting a clear diagnosis and good advice for your GP is gold dust. I hope you get good support from the GP.

Really good. I can see it's taken a huge amount of work to put together key points in the history. You have managed to make it both succinct and comprehensive, and very clearly presented. Thank you, @Adam pwme.

LCAP are already on Bluesky: https://bsky.app/profile/lcap.bsky.social My point was that leaving Twitter doesn't mean the attacks from such groups will stop. Though on Bluesky you have more power to block. I would think if the start the same attacks on Bluesky a lot of people will block them.

It's a one minute video showing the treatment, nothing about effects.

Ugh. I find it astonishing that anyone claiming to be a scientist or clinician can take seriously the anecdote of one person who was just one among many who had a short spell of post Covid symptoms and recovered, yet dismisses the millions with serious unremitting Long Covid as social media...

I seem to remember we were unimpressed by the quality of the cryotherapy trials.

The reply is clearly written by a staff member not by Neil Riley. It focuses entirely on sympathy for an individual's distress and suggesting use of their helpline, while not apologising at all for Riley's awful article. Not good enough.

I would think Neil Riley instructed the comms people to shut off social media responses. Their jobs depend on the ongoing approval of trustees.

Mark Vink's response to the article by Neil Riley:

I hope the body mapping research Oonagh Cousins is involved in is better than the study posted on the forum recently: Drawing the lines of fibromyalgia: a mixed-methods approach to mapping body image, body schema, and emotions in patient subtypes, 2024, Swidrak

I get what you are saying, Kitty, and I think that's probably the case for many pwME. For me I think if I'd had real time wearable data when my ME was mild and I was still working and caring for a family it could have made a big difference. I was always on the edge of tripping myself into...

I noticed that too. If I get dressed and go for a walk in my garden in the morning then go back to bed for the rest of the day, there's no one to get my and my daughters' meals, or do the other things that need doing in a household of two sick people. Oh, and by the way, Mr Riley, a large...

S4ME is its members. We don't have staff who can take on things like this. If you or anyone want to work on it by all means do.