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

Suffolkres said:
APPG 17th December 2024
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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?
 
The new chairman of Rangers football club was in contact with me over the weekend after I sent him a briefing note a couple of weeks ago. He thinks it's 'incredible to think that 40 years of science has not been able to make any viable improvements to ME patients' lives' and has asked me to put him touch with Chris Ponting to arrange a meeting between them. Chris has agreed and I've sent Malcolm back Chris's details.
 
JohnTheJack said:
The new chairman of Rangers football club was in contact with me over the weekend after I sent him a briefing note a couple of weeks ago. He thinks it's 'incredible to think that 40 years of science has not been able to make any viable improvements to ME patients' lives' and has asked me to put him touch with Chris Ponting to arrange a meeting between them. Chris has agreed and I've sent Malcolm back Chris's details.
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That's amazing - well done!
 
JohnTheJack said:
The new chairman of Rangers football club was in contact with me over the weekend after I sent him a briefing note a couple of weeks ago. He thinks it's 'incredible to think that 40 years of science has not been able to make any viable improvements to ME patients' lives' and has asked me to put him touch with Chris Ponting to arrange a meeting between them. Chris has agreed and I've sent Malcolm back Chris's details.
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Depending on what happens might test my preference for Celtic football club ahha.

In all seriousness, congratulations!
 
boolybooly said:
I wrote to my MP Gen Kitchen (Wellingborough) and invited her to attend the Dec 17th APPG inaugural meeting.

I am quite curious to know whether she did, is there any way to find out?
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Looking at the page https://appgme.co.uk/who-we-are/ it seems that Action for ME and the MEA are continuing to provide secretarial support for the APPG, but if I remember correctly before ‘minutes’ were a bit hit and miss appearing on line.
 
Peter Trewhitt said:
Looking at the page https://appgme.co.uk/who-we-are/ it seems that Action for ME and the MEA are continuing to provide secretarial support for the APPG, but if I remember correctly before ‘minutes’ were a bit hit and miss appearing on line.
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Well its good of them and I expect those involved must be volunteers and might even have ME themselves so all is forgiven.

I notice the chair and officers have changed since I wrote, I suppose that was a result of the meeting and new parliament. Might be a good excuse to write to my MP again and let her know about the changes.
 
Good to see clear cross party approach in the officers of the new APPG. There are definitely other MPs who aren’t officers who have joined the group (I think there’s a minimum number they need to be an APPG - 20 rings a bell )
And my MP has let me know she joined she’s not listed here - not an officer.
 
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