UK Government Delivery Plan for ME/CFS, published 22nd July 2025

[Suffolkres]

I'm sorry to be negative, but Dr Luis Nacul heads up a service in Canada that is a long way from what we would want a specialist ME/CFS service to be. We've discussed it elsewhere on the forum. The service promotes unproven therapies including Graded Activity Therapy (it's just not called that).

I hope it goes well.

Dr Nacul left Canada early 2025.
He is firmly back in the UK

 

[Suffolkres]

No, the general lay public. This is a general issue about governance of medicine.
But I am beginning to realise that most of the advocates for people with ME/CFS who get the chance to interact with government are not prepared to challenge lots of things they should. That is how we got to where we are with the Delivery Plan. Even charities have to look as if they are doing something positive and that creates conflicts. Fortunately there are people like Suffolkres who will never be trampled on.

I am but one of a focused single minded dedicated team here in the Eastern Region!
How our severely affected have kept going is a small miracle...... and some have died along the way. Brian Bungay, Dan Norfolk, Tony Norwich, to name but a few.

It's been that fantastic collective spirit and some exceptional NHS Commissioning staff over 2 decades that have empowered us so we were not trampled over.

 

[hotblack]

ME Local Network are becoming an effective voice

I know very little about them, tried a search and found broken links, any pointers to who they are, how to contact them and work with them if you’re just an individual? The thread here talks about contact if you’re a group leader, what if there are no groups of any use near you?

We could do with organising to work for better services, but, how?

Whatever the DOH decide, realistically with current pressures and constraints , you are looking at 4 to 5 years negotiation - as NHS Commissioning grinds so slow, especially in the current constrained climate, redundancy.

That just isn’t feasible for many of us. Much as we’d like to, we need representatives doing this.

Edit: just to clarify, all these questions weren’t meant to be directed at @Suffolkres although any insight is ofc v welcome, more they were in general and thinking out loud on how we can organise, how we can get charities or ideally others who are supposed to be representing our interests do so.

 

[Suffolkres]

I know very little about them, tried a search and found broken links, any pointers to who they are, how to contact them and work with them if you’re just an individual? The thread here talks about contact if you’re a group leader, what if there are no groups of any use near you?

We could do with organising to work for better services, but, how?

That just isn’t feasible for many of us. Much as we’d like to, we need representatives doing this.

Edit: just to clarify, all these questions weren’t meant to be directed at @Suffolkres although any insight is ofc v welcome, more they were in general and thinking out loud on how we can organise, how we can get charities or ideally others who are supposed to be representing our interests do so.

Simply, you can't!
Look at AfME under Chris Clarke.
Or Peter Spencer .... AfME
Or AYME under MJ Willlows......
With Esther Ransom in tow...

Or currently paid staffers in MEA ...

(except for CS, who helped us counter the crap in ICB 2022 to 2024 early on.....and for whom I have the greatest admiration lasting for some 27 years.

 

[MrMagoo]

I am but one of a focused single minded dedicated team here in the Eastern Region!
How our severely affected have kept going is a small miracle...... and some have died along the way. Brian Bungay, Dan Norfolk, Tony Norwich, to name but a few.

It's been that fantastic collective spirit and some exceptional NHS Commissioning staff over 2 decades that have empowered us so we were not trampled over.

May their memory be a blessing