This is a really good point. None of this should be in any way antagonistic, it should be completely collaborative.
Oh. Oh heck. Stupid question, but has the S4ME letter been sent to Keith and Russell as well as the trustees..? Keith seems to be pretty...
This really gets to me. Paternalism at its worst. Michael J. Fox says “Parkinson's patients are the experts on what we have. We have a...
This. I have spent the last few years doing everything I can to try and change... Any of this. ME, benefits, mental health... It has...
I did the HOPE for Long Covid course, on an app on my phone and they had a couple of weeks or so on figuring out what matters most to you, with...
why would it not be possible to download a .pdf? That is how I would expect this to work; it is widely used elsewhere. Why can't patients have a...
I feel absolutely bl**dy furious that in the middle of the Post Office scandal, the tainted blood scandal, the Tavistock clinic scandal, the carer...
I attended (virtually) the rehab course the LC clinic ran. It was two hours once a fortnight and we all said; why isn't it an hour a week? and...
OMG. "co-production between people with ME/CFS and specialist ME/CFS services. This is to ensure that the toolkit provides information that is...
That's a terrifying thought, claiming to help while using the tools they claim do so as a silencing technique.
Is there any way we can find out? Maybe contact the MS society & cancer research UK & show them this and ask "do you get asked this stuff?"...
Apologies. The Sussex group was slightly sarcastic shorthand, as that group is known to be very supportive of GET/CBT and the researchers involved...
Oh, WOW those comments! :jawdrop:
Is it the Sussex group?!
Did anyone else see this..? [MEDIA]
Interesting phrasing. My understanding was that it was a massive community wide effort?
...And this post is how I found out that I am blocked by Michael Sharpe. Who I have never interacted with. Excellent "support for 'freedom of...
Oops. I think I am repeating known info, but had a conversation about this elsewhere today.
I have had confirmation that yes, this is the case, and that as of April 2025 they will be taking over responsibility for our local Long Covid...
I think it is going to take a lot more than a letter. I am aware that there are various conversations going on about this, and I am being...
Separate names with a comma.
