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

Binkie4 said:
I have just written to my MP requesting he send a representative to next week's APPG. The content seems particularly important this time as @Andy earlier outlined. We shall see if anyone attends. If the meeting were live-streamed, I would personally want to watch.


"Invite Your MP To Join The Next Meeting Of The All-Party Parliamentary Group On M.E
March 8, 2023


The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 21 March 2023 from 3:30pm-4:30pm. In addition to reconstituting the APPG, the AGM will include:

  • a one year-on review of the implementation of the new NICE guideline including apresentation 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 ICB’s and NHS Trusts.
  • a discussion of support for those with severe ME
  • consideration of our workplan for the coming year.
  • Minutes of the AGM will be shared in accordance with APPG rules.
Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).

Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG."

There seems to be a lot of meat in this meeting. The results of the
FOI request responded to by 106 ICBs ( Integrated Care Boards) and NHS Trusts should be interesting. How far are the new guidelines being adhered to? At a guess......nil. The inadequacy of the treatment of severe ME has been to the forefront lately and desperately needs addressing.
Minutes- do we know what APPG rules are?
Click to expand...


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.
 
InitialConditions said:
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.
Click to expand...

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
 
Last edited:
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.
 
Last edited:
Binkie4 said:
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 ICB’s 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?
Click to expand...

This is really worrying as they are so important; perhaps this can be reinstated? What is going on? :/
 
Ariel said:
This is really worrying as they are so important; perhaps this can be reinstated? What is going on? :/
Click to expand...

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?
 
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..
 
There are hundreds of APPG's and they have no formal role or clout in parliament and are a tiny part of any MP's role. The ME/CFS APPG has impressed me with what they have achieved so far, including debates and a good report. Meetings have to be fitted into busy schedules and are liable to change at short notice. I think Carol Monaghan has been fantastic.
 
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.
 
Agreed MPs have little to no direct power to do anything. They do have much more influence than average UK subjects though. Otherwise we wouldn’t have had the lobbying ethics scandals in the past and more recently.

Select Committees, only introduced in the 1970s, are fairly influential for example. The opportunity to lobby ministers and officials through formal meetings and informal discussions is very useful. A cause which has the support of effective NGOs and parliamentarians will register with Ministers and Departments Policy Officials as an issue much more than if individual members of the public are raising it.

Agreed ME/CFS is only one topic in thousands that an MP will be asked to get involved with. That’s why it worthwhile individual PWME wherever possible engaging with their MP - all the people involved in the debates had been engaged by constituents.


Obviously it isn’t worthwhile pursuing engagement with a disinterested MP once you’ve established where they stand.
 
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.

upload_2023-5-15_23-34-54.jpeg
 
Binkie4 said:
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.

View attachment 19555
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top