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

Not sure if you are aware, but, according to a post I saw on Twitter earlier, the AGM meeting has been postponed. Not sure of the source for that info.

EDIT: The source is an MEA Facebook post.

 

I need to check this. I saw a comment on facebook that it was on as if it had previously been cancelled but reinstated. I will recheck tomorrow and post accordingly.

EDit: see below for confirmation of postponement. @InitialConditions - thank you

 

https://twitter.com/user/status/1636349339349012482

 

https://meassociation.org.uk/2022/0...liamentary-party-group-appg-for-m-e-29-march/

Post now on ME Association page. Meeting rescheduled to 29th March, 10-10.30am.

edit: the revised schedule only allows half an hour for the meeting rather than the hour initially announced. It is hard to see how the initial agenda will fit into half an hour.

The following items no longer seem to be on the shortened agenda

• "a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICBs and NHS Trusts.
• a discussion of support for those with severe ME" (post #158 @Andy )

ie the most interesting items seem to have been removed from the agenda announced on 6th March. Anyone?

edit2: Apologies all. The link above refers to last year's APPG meeting which appeared at the top of my MEA fb page. Sorry I didn't catch it. For other info see below.

 

This is really worrying as they are so important; perhaps this can be reinstated? What is going on? :/

 

What is going on? Does anyone know anything about AfME's FOI request about the implementation of the new Nice guidelines responded to by 106 ICBs and NHS trusts? What information did they collect?

Why would a discussion on support for those with severe ME be withdrawn at a time when we have a number of severe ME patients in extremis and lacking support?

 

I very much hope so.

 

Apologies all. I have been in touch with MEA. The link I posted for the pending APPG in fact refers to last year's meeting. The new date has not yet been set.

It has also been confirmed that the length of time for the pending meeting remains as originally planned and the content of the meeting as originally advertised. Phew! I apologise for setting a hare running and causing consternation and unnecessary concern.

 

Feels like the APPG leadership (there are 5 or 6 co-chairs) and/or the secretariat, can't organise the proverbial drink up in a brewery.

No meeting for something like 10 months, what could been seen as a hastily organised meeting when there was a bit of agitation on social media (such as The Chronic Collaboration) and now this is it/isn't it happening.

Is it any wonder many folks with ME are so despairing when our elected representatives can't bring themselves together to fight, even a bit, on our behalf?

There was an opportunity for the APPG to get some momentum last year with the DHSC piece and build from there, however, yet again, we have a complete vacuum.. Many people with ME will have contacted their MP, using precious energy that they can ill afford to waste, most of those MPs will not have attended anyway, but that effort/energy can't be gained back.

Sorry, end of moan..

 

APPGs aside (and I echo Trish's comment on the ME/CFS APPG) the UK Parliament is relatively weak compared to the Government, this something that has accelerated over the last 40 years. Individual MPs have very little actual power and even the most dedicated will find progress difficult unless it accords with the ambitions of the Government of the day. The average UK MP has 70,000 electors and 100,000+ constituents, of who 300 may have ME/CFS, for the average MP we aren't going to be a major focus.

 

https://meassociation.org.uk/2023/0...eeting-of-the-all-party-parliamentary-on-m-e/

Link to the new date for the next APPG meeting from the MEA.
Date is 10th May. Agenda includes AfME data from foi requests on how the new Nice guidelines are being implemented.

 

Depending on FOI data could this get a " lift" from ME awareness day media reporting ?

 

Bump to confirmed date for next APPG- Wednesday THIS WEEK, 10th May.

 

Has anyone heard what happened at Wednesday's APPG? I am assuming it took place as planned.

 

I found this on Action for ME's fb page today. I had been checking on it regularly but only found it today although it says it has been up for several days.
I wonder what " soon" means. From memory I think they are supposed to post within 28 days.

 

When I asked about minutes after previous meetings, I got very short shrift from Carol Monaghan that they would be agreed at the next meeting and then published.

ETA: I'd not be holding my breath..

 

I've been in touch with Action for ME a couple of times. I was initially told that there would need to be a meeting to agree the minutes which would then be posted on the APPG website. I emphasised the importance of the info on the implementation of the new guidelines and treatment of the severely ill, to the ME community.

Today there has been an addition sent by the Communications Officer
"I wanted to inform you that we will be sharing the findings from the Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts, as soon as possible. We are currently in negotiations with the press and media to try and secure coverage and awareness-raising with the public."

I was glad to read this and that they are seeking publicity for the findings from the FOIs. Hopefully this will be released quickly.