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...
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...
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...
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...
I seem to remember we were unimpressed by the quality of the cryotherapy trials. [SPOILER]
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...
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...
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...
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...
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.
The people judging the drawings were psychologists or doctors who are experts in pain and didn't know the participants. Is this an art...
So Riley gets to make a statement on the MEA website that isn't a real apology, it's a string of excuses and self justifcation. So he sets up...
I've just had a quick look at the MEA trustee, staff and volunteer list. I didn't realise they employ so many people. I see Russell Fleming has...
I'd vote for closing it down and transferring the materials written by Charles Shepherd to AfME or archving them in accessible form once Charles...
https://www.s4me.info/threads/open-letters-to-the-uk-me-association-trustees-about-a-research-project-developing-proms-led-by-sarah-tyson.37937/#po...
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