UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

Thanks hotblack. I may try that.

 

That sounds like a lot of CBT. And very expensive. And not very effective.

How does that even work? What I know of CBT is that it's very repetitive and loopy, you can pretty much cover it in 10 minutes.

Sounds like either someone made a lot of money, or the health care system wasted a lot.

But for sure you can definitely claim that CBT is very effective at getting health care systems to convince sick people they are to blame for their own failings. That I definitely recognize.

 

In my experience CBT is very good for some things. But is also sometimes used as a term for therapy which isn’t actually CBT. And also used completely inappropriately for things it shouldn’t be…

In that way it reminds me a bit of the terms and practices of Scrum or Agile in the tech world. I guess all fields have buzz words and trends that people pick up on and misunderstand.

 

Do we know how the APPG is developing in the ( not so) new Parliament?

I was very sorry to learn that ED Davey would no longer be our MP after the recent election as a result of boundary changes. He had always been responsive to ME issues.
However on writing to our new MP Paul Kohler ( Libdem, Wimbledon) to ask if he would consider joining the ME APPG, I have had a response saying he will be approaching them to become a member. He wishes to know more about current research requirements and is willing to write to the Health Secretary. It's a satisfactory start: now I shall need to think of what research to draw attention to. Any ideas?

 

Morning all,

Just seen online that the APPG is back! New chair and hopefully new energy.

--

https://twitter.com/user/status/1863530338682646781


There is a link to the APPG website and text to write to your MP asking them to attend.

https://appgme.co.uk/meetings/appg-inaugural-meeting-17-december-2024/

 

Fingers crossed. Good news that it is again up and running following the general election.

I need to be writing to my MP. Have a new one and I know next to nothing about him.

 

APPG 17th December 2024

 

I noted the agenda and draft MP letter used just ME rather than ME/CFS. Given the NICE guidelines use ME/CFS shouldn’t we be using that in official contacts? I try to remember to use ME/CFS in referring to our condition in general though I still use ME in referring to myself more informally.

Checking on social media it seems that both Action for ME and the MEA are referring to the group as the APPG on ME. Is that an inappropriate choice of name?

 

Very pleased to see this. My new MP committed to finding out about the APPG with a view to joining. I have sent this to him.

 

That's amazing - well done!

 

Depending on what happens might test my preference for Celtic football club ahha.

In all seriousness, congratulations!

 

I think one of the Tweets from the MEA said Jo Platt was putting herself forward as chair, so, perhaps some of the reporting has put the cart slightly before the horse, but, assume its probably a done deal.