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

Andy

Andy

Retired committee member
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/

#MEAction and the ME Association are both delighted that Carol Monaghan (MP for Glasgow North-West) has re-established a new All-Party Parliamentary Group (APPG) on ME.

This is a parliamentary initiative for which the ME Association will be providing secretariat support. The purpose of the APPG on ME is to seek to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.

Ms. Monaghan has campaigned tirelessly on behalf of the ME community and has led several important debates that culminated last year with ME being discussed in the House of Commons. Her continued support is very much appreciated by all concerned.

We’d also like to thank all the MPs who supported these debates and who attended the inaugural AGM of the new APPG on 14 January 2020, and all those in the patient community who encouraged their MPs to attend.

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)
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https://www.meaction.net/2020/02/19/next-steps-for-the-appg-on-me-in-the-uk/
 
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MPs who attended the first meeting

Below is a list of the MPs that attended the first meeting in January 2020 as well as officer’s roles:

Carol Monaghan MP (Chair)

Sharon Hodgson MP (Co-Chair)

Stephen Metcalfe MP (Co-Chair)

Ben Lake MP (Vice-Chair)

Hywel Williams MP (Secretary)

Olivia Blake MP (Treasurer)


Deidre Brock MP

Fiona Bruce MP

Wayne David MP

James Davies MP

Mary Glindon MP

Robert Goodwill MP

Margaret Greenwood MP

Dame Diana Johnson MP

Sally-Ann Hart MP

Kerry McCarthy MP

Navendu Mishra MP

Gavin Newlands MP

Jonathan Reynolds MP

Alex Sobel MP

James Sunderland MP

Stephen Timms MP

Michael Tomlinson MP

Liz Twist MP

Wayne David MP
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eta:
Note that some MPs might have sent their apologies or might have joined the APPG since this information became available to us.
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Whatever happened with the previous APPG and how impressed or unimpressed people were this is a different time and a new group of MPs. Carol Monaghan is doing a good job in getting ME highlighted. I think it is right to understand that an APPG can’t work miracles but i have confidence that CM is working hard to try to bring MPs together to try to exert some collective pressure in whatever formal and informal ways are open to them as a group, including by those MPs who are within the government party. And whatever pressure for change they can bring to bear is better than not having an APPG and there just being easily deflected effort of the odd PQ and letters to health ministers by individual MPs.
 
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

Recommendations from ME charities
● Funding for research to reflect the disease burden of this condition, both in its severity and prevalence throughout the UK. The ME community experience a considerable disease burden, and for decades have faced underinvestment, mistreatment and neglect. The need for biomedical ME research is urgent and long overdue.
● Development of a clear strategy for research on this condition, which could include government-funded biomedical ME research centres and encouraging interest from leading researchers and scientists.
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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:

Introduction
There is no question that in the past there has not been enough research into M.E., created by a lack of recognition of the illness, a lack of interest from eminent scientists and a lack of funding. Many studies do not include people who have the most severe form of M.E. and we must continue to advocate for a stronger focus on severe M.E. Studies undertaken often feature small numbers and there has been a lack of biomedical focus.

However, this is beginning to change, thanks to the collaborative efforts of patients, professionals and advocates. While Action for M.E. isn't able to provide the large-scale funding required to find a cure for M.E., we do have the vision and determination to work with others to stimulate interest and investment, which will eventually lead to change
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https://www.actionforme.org.uk/research/introduction/

edit. The 100 MPs lords mentioned was membership of appg, not attendees stats.
 
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Cinders66 said:
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
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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.
 
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NelliePledge said:
Whatever happened with the previous APPG and how impressed or unimpressed people were this is a different time and a new group of MPs. Carol Monaghan is doing a good job in getting ME highlighted. I think it is right to understand that an APPG can’t work miracles but i have confidence that CM is working hard to try to bring MPs together to try to exert some collective pressure in whatever formal and informal ways are open to them as a group, including by those MPs who are within the government party. And whatever pressure for change they can bring to bear is better than not having an APPG and there just being easily deflected effort of the odd PQ and letters to health ministers by individual MPs.
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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

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

https://www.meassociation.org.uk/20...81-2012-such-a-short-life-such-a-huge-legacy/
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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.
 
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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)
 
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Dx Revision Watch said:
Where does the figure of 100 MPs and Lords attending APPG on ME meetings in 2005 come from, please?
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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.
Replies to the invitation to join the Group
Tony Wright welcomed members, saying this was the best attended meeting of the group in seven years. A number of new MPs had joined since the General Election, and membership now totalled over 100 MPs and Peers.
http://appgme.org.uk/Downloads/minutes/appgmins2005/APPG_minutes_6_July_05.pdf
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I don’t know when the ME APPG started? The minutes info @Dolphin provided start 2000. key point , it isn’t new.
 
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Cinders66 said:
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?
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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.

I agree drop off awas huge problem before with Associated members vastly outnumbering MPs. I agree main point is having enough really committed members.
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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 don’t know when the ME APPG started? The minutes info @Dolphin provided start 2000. key point , it isn’t new.
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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.
 
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Dx Revision Watch said:
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. 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. My ME agenda site copies of Minutes only go back as far as 2007.
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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)
 
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Cinders66 said:
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)
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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.
 
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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..."
 
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