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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 scandal, where victims were blamed, dismissed and wilfully ignored we provided expert by experience input and constructive criticism based on...

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 they replied that it gave us chance to rest in between. When we pointed out that we wouldn't need two weeks to recover, if they cut the session in half...

OMG. "co-production between people with ME/CFS and specialist ME/CFS services. This is to ensure that the toolkit provides information that is important and relevant to both people with ME/CFS and clinical services, and is easy to use. Ensuring the ‘patient voice’ is heard is front and central...

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?" Could we then ask MEA why they / clinics are asking pwme? Not that they are listening, as the reponse to the excellent S4ME letter showed. MEA also...

Apologies. The Sussex group was slightly sarcastic shorthand, as that group is known to be very supportive of GET/CBT and the researchers involved in the BPS position and their involvement would allow the "patient participation" box to be ticked while only asking a supportive patient group...

Oh, WOW those comments! :jawdrop:

Is it the Sussex group?!

Did anyone else see this..?

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 enquiry" :rolleyes:

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 clinic as the NHS will be stepping back. Not sure if this is nationally? Lead Psychologist Jayne Woodcock is apparently former BACME as is keen on the...

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 necessarily vague in that. The problem is, as I understand it, is that it requires trying to change an idealogy and that BACME completely believe that they...

Sorry to be That Person but it is MELN = ME Local Network ME Local Network (MELN) is a national network of local support groups of people living with ME/CFS (and carers). We aim to strengthen the relationship between national charities, organisations and local groups, to ensure that the...

:laugh: brilliant

On a related note, the government's benefits green paper of two years ago used the words "trust" and "rebuilding trust" something like 17 times. Clearly they have completely abandoned that idea :rolleyes: Those with power do seem to get the arrow of causation the wrong way round, as raised...

MS society response, which is saying what I have been saying about the government's rhetoric for a while: looking at the wrong things...

I listened to the episode of the Newsagents podcast https://www.globalplayer.com/podcasts/episodes/7Dri7Jv/ with Hannah Barnes, who wrote the book about it, and thought much the same. You could have swapped GIDS for the word ME as they were saying exactly the same things. Frighteningly so.

https://www.disabilityrightsuk.org/news/disability-poverty-campaign-group-statement-modernising-support-independent-living-health-and Excellent statement on Disability Rights UK's website