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

Posts on this thread have been moved from this thread about the new APPG being set up https://www.s4me.info/threads/uk-all-party-parliamentary-group-being-reactivated-2020.13172/

https://www.meaction.net/2020/02/19/next-steps-for-the-appg-on-me-in-the-uk/

 

eta:

 

Link to same article on the ME Association website.

 

next meeting
APPG for #MECFS 1pm Tue 3 Mar

https://twitter.com/user/status/1230445552095125510


eta:
https://twitter.com/user/status/1230054315047428096

 

Action for m.e seem to have no desire for real progress and improvement. They bundled the APPG announcement in with another, put up the wrong link and their letter
https://www.actionforme.org.uk/news/will-your-mp-attend-the-appg-for-me-in-march/

Conveys absolutely nothing about the desperate need in our community for action or any suggestions of a long standing funding crisis, in fact the info & letter provided it makes it just sound like why not invite your MP for a biomedical research tea party. How non rallying /inspiring is that. The House of Commons briefing paper was calling for this -=
https://www.meassociation.org.uk/wp...ing-on-M.E.-for-Backbench-Debate-18.01.19.pdf

It turns out just 24 MPs attended the last APPG due to short notice, and in 2005 they were getting 100 MPs and Lords so you’d think - if the charities wanted real progress and parliamentary lobbying - they’d be really pushing for more MPs to understand the ME plight and attend to start to do something. Contrast with the original letter #Meaction put out for the first meeting
.

when the last APPG died it’s slow ghastly death following ridiculous meetings of just 2 -5 MPs attending, the countess of marr was saying that it hadn’t been able to keep momentum and keep/attract MP interest and the charities were saying they couldn’t spare he time and resource to maintain the secretariat role.https://www.meassociation.org.uk/20...l-now-be-via-forward-me-group-22-august-2017/ For an illness situation that should be talked of as the scandal of the 21st century, with a very sick population who are generally considered one of the most underserved in the uk with problems across the board, My own belief is that the charities have to change their own attitude and behaviour to such things instead of offering the community just this:

https://www.actionforme.org.uk/research/introduction/

edit. The 100 MPs lords mentioned was membership of appg, not attendees stats.

 

I hope the new APPG have been given this to read.

I would like to see the APPG continue along the lines of the Parliamentary debates last year.
Bring the new members up to speed re PACE and the CBT/GET NICE guidelines issue; (they voted last year to remove CBT/GET). And how biomedical research has received little funding as a direct result.
Plus the issue of parents of kids with ME being targeted by SS (social services); which all stems from the same false narrative.
MPs should also be made aware of the role the SMC has played in this.

The truth of the political issues behind the ME communitys plight are rarely exposed and MPs are in a unique position to be able to do it.

Yes, they should also be made aware of all the research that has been going on, particularly in the US.
But unless they are fully aware of the situation we are in, how long it has been going on and who are responsible, the biomedical research presentations will have little impact and be just like any other illness lobby group begging for more money.

eta:
I know that AfME would like us to put PACE behind us and 'move on' (and its obvious why) but it's influence can still be clearly seen in their own literature, as well as BACME run clinics up and down the country.

 

Reminds me of advice regarding lobbying in the EU "You need to pin one [MEP] down to doing the legwork" that advice was provided by a UK MEP (now former MEP obviously) in relation to this EU Petition [https://www.s4me.info/threads/me-ac...-is-preparing-a-resolution-on-me.13569/page-2]

I also agree with this "easily deflected effort of the odd PQ and letters to health ministers by individual MPs".

@Andy has posted an extract from the minutes(?):
"The AGM established the topics that the APPG on ME will cover, including:

Access to healthcare
Access to financial support and welfare benefits
Protection for children with ME
Biomedical research spending by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR)"

So that looks promising, good luck to all of those participating/inputting.

@Michiel Tack @Giada Da Ros

 

This sums uP well how the severely affected feel about research situation. I hope that this need And urgency is conveyed to the MPs at the meeting rather than the science presentations taking up all the time.

In 2011 this was written by the late
Emily collingridge, an appeal

 

Where does the figure of 100 MPs and Lords attending APPG on ME meetings in 2005 come from, please?

 

In my experience, although APPGs used to require 20 "Qualifying members" in order to register a new group, after the inauguration meeting, it was pretty much unknown for anything like the full 20 "Qualifying members" to pitch up at subsequent meetings.

Not unknown, either, for MPs to sometimes send their parliamentary assistants to APPG on ME meetings, as proxy attendees.

Not unusual, either, for an MP to be member of two or three APPGs.

 

I'd be looking for quality, short and long-term commitment, over numbers.

Little point having 30 or more MPs and Members of the HoL turning up for an initial meeting, if in practice, only a handful (or less than a handful) bother to attend subsequent meetings or do attend, but infrequently.

An historical example:

This APPG on ME group from 2007, would have had 20 "Qualifying members" whose names would have been listed in the details in the Register for this particular Parliamentary group:

https://meagenda.wordpress.com/2007/07/31/appg-on-me-minutes-of-12-july-07-meeting/

Minutes of the meeting of the All Party Parliamentary Group on M.E.

Thursday 12th July 2007 Committee Room 17, House of Commons

The group's Office Holders, MP members and HoL members who actually turned up for this meeting were:

PRESENT

Dr Des Turner MP (Chair) (Office Holder)
Dr Ian Gibson MP (Secretary) (Office Holder)
David Amess MP (Treasurer) (Office Holder)
Celia Barlow MP (Member)
John Bercow MP (Member)

Koyes Ahmed (Office of Dr Des Turner MP) (Non voting, proxy attendee)

 

The Register of APPGs for 2020 has been published in the last few days:

https://www.parliament.uk/mps-lords...iamentary-groups/registers-published-in-2020/

24 February PDF Version (5 MB)

https://publications.parliament.uk/pa/cm/cmallparty/200224/contents.htm


Register Of All-Party Parliamentary Groups [as at 24 February 2020]Myalgic Encephalomyelitis (ME)

https://publications.parliament.uk/pa/cm/cmallparty/200224/myalgic-encephalomyelitis-me.htm

 

The current list of APPGs (Country Groups and Subject Groups) can be found here:

https://publications.parliament.uk/pa/cm/cmallparty/200224/contents.htm

 

Here, although it’s membership rather than attendees of one meeting so not like for like, apologise. I’ve added an amendment. The sad thing I didn’t pick up on was that then, in 2005, 14 attendees was noted as the best for 7 years, so it was actually low attendance back then. The idea would be lots of members initially to allow for drop off? I agree drop off awas huge problem before with Associated members vastly outnumbering MPs. I agree main point is having enough really committed members.

I don’t know when the ME APPG started? The minutes info @Dolphin provided start 2000. key point , it isn’t new.

 

As I say, I'd rather see a small number of committed MPs and members of the HoL who are prepared to attend regularly involved from the beginning than a large number.

What happened to that original 100 who showed initial interest in 2005? They would all have been receiving notices two weeks prior to a meeting, yet the vast majority very rapidly lost interest.

There are no "Associated members". Only MPs and members of the House of Lords are members of APPGs and only they can vote at an APPG. Anyone else is there as a guest or in the case of AfME and MEA, as Secretariat.

I've been around since mid 2002, but I don't remember when the first APPG on ME was assembled. It's probably archived in the Stephen Ralph MEActionUK Yahoo Group emails.

My ME agenda site has copies of Minutes that only go back as far as 2007.

 

Well if you look at early minutes the attendees are like forward ME ones, not just mea & afme, about 10-15

2006-7 minutes all list attendees similar to this
PRESENT
Dr Des Turner MP (Chair)
Celia Barlow MP
Simon Alcock (Office of Ed Miliband MP)
Colin Barton (Chairman, Sussex and Kent ME/CFS Society)
Paul Davis (RiME)
Neil Devlin (North London ME Group)
Ciaran Farrell (Person with ME)
Douglas Fraser (Person with ME)
Christine Harrison (BRAME)
Tanya Harrison (BRAME)
Aidan Hocking (Office of Ed Miliband MP)
Doris Jones (25% Group)
Dera Kow (Patient)
Ruth Manning
Di Newman (Peterborough ME and CFS Group and Cambs Neuro Alliance) Clive Page (Father of person with ME)
Augustine Ryan (Person with ME)
Dr Charles Shepherd (ME Association)
Trish Taylor (Action for ME)
Stephen Vaughn (Sussex and Kent ME/CFS Society)
Heather Walker (Action for M.E.)
Adrian Ward (NICE)

 

As I've just explained: none of the orgs above were "Associate Members".

They were all orgs that were permitted at the time to attend as guests.

The rest were members of the public who were permitted at the time to attend as guests.

That particular APPG on ME permitted members of the public to attend its meetings. You signed in at the door and your name and affiliations were recorded in the Minutes.

In the summer of 2010, when Annette Brooke took over as Chair, the Office Holders had decided that from the autumn 2010 Parliamentary term, the group would no longer be open to members of the public attending.

AfME and MEA have provided joint Secretariat services to these meetings and acted as Minute takers.

But all non MPs and non Members of the House of Lords would have attended as guests, only. And they had no vote at meetings.

 

The Countess of Mar's Forward-ME group did not start until 2008.

But all those reps from charity orgs listed above were there as guests.

Even org reps designated as providing Secretariat services are not members of the APPG on ME.

And no-one has a vote at an APPG meeting other than MPs and Members of the HoL.

 

It may be of interest to know that when Des Turner was Chair of the APPG on ME, at the time when orgs and members of the public were permitted to attend these meetings, Des had threatened members of the public with being escorted out of the building by Parliament security.

See also:

https://meagenda.wordpress.com/2009...arty-parliamentary-group-on-me-by-john-sayer/

Scroll down beyond the commentary by Ciaran Farrell, 15 December 2009 to:

Meeting of the All Party Parliamentary Group on M.E.
12 December 2009

Report by John Sayer (the then Chair of M.E. Support-Norfolk) who had attended the meeting:

"...I was well and truly hacked off at the Secretary walking out before the meeting had even got going, being treated like a pariah by a Chairman threatening to end the meeting and having chronically ill patients removed by the police, and being patronised by a Minister whose address was the epitome of political spin..."