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

Sean said:
1. those who were harmed by or been through the GET and CBT generation and have had it eg decades need something different currently to newer diagnosed.

I think this is important.
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It’s something that I think might be easy to miss in the rush to play nice and not be divisive. But I’m not sure it is acknowledged, for all sorts of reasons, that eg going through an extreme GEAt and CBT when ill or ten years of being left flopping round like a dying fish whilst the normal support systems available for other debilitating conditions were actively removed (including rumours that encouraged family and friends not just to not support but abandon) and bullying and exertion actively suggested to be imposed by anyone around (plus false accusations still not lifted of ‘being mad/hysterical and so on) to the chances anyone recovers.

such accusations affected access to all medical care and if others didn’t have that then I know and have watched them assume it must be an exaggeration being quite often the convenient thing. It only stands out when you collect a homogeneous group and notice it’s at least a significant minority. If you dilute that such pattern gets missed as being down to the condition, unlucky timing and then staff bring good or bad being the differentiator because within ‘all inc covid’ it looks like 5% and maybe it was the way they acted or comorbidities etc.

and there are genuinely things in long vivid not proven by time yet. Hopefully they won’t have the same windows for recovery not just missed but everyone around them encouraged to impose the wrong thing. Which is great. But those made permanent over decades matter. And the better managed bunch could be used to set the clsssic ‘doesn’t last longer than 3yrs’. Based on % that aren’t specific to the totally different regimes. I think there are generational differences with me/cfs due to timing of when over the last 50yrs you had your bad time. And the support and approach package then. And there’s a tendency towards convenience and numbers and collateral damage.

I don’t know whether it counts as being ‘in the tent’ properly or if you get caught up in making ‘greater good’ decisions

I just worry of me/cfs being used as an and also that should be grateful to be part of it. And their history being used as a tale of warning rather than the plight of those treated the exact wrong way for so long they won’t recover as they might have could still be useful for covid but rolling together creates a friction between those ‘preventing it happening’ vs those who can’t undo the situation. And that making for hard advocacy.

plus thanks to the appalling labelling me/cfs people have false records to clean to get their human rights properly returned. I just know even in me community how those untouched by this feel squeamish about getting involved ‘just in case’ and getting tarred with the stink and ‘maybe smoke and fire’ caution. I can see the pragmatism coming in if you are a group representing both and you think whinging about something in the past won’t help those it didn’t happen to etc.

I don’t know that hitching wagons together will improve this.
 
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Robert 1973 said:
Until the House of Lords is reformed it would be good to see Carol Monaghan given a peerage so she could continue her advocacy in parliament. Sadly unlikely. I wonder if she might stand for election in the Scottish parliament.

As @Hutan said, it would be great if she could take on a role with one of the ME charities.
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The SNP doesn't send anyone to the House of Lords as a matter of principle.
 
I note that Darren Jones has been appointed as Chief Secretary to the Treasury.
I met him at one point in the House of Commons in relation to his interest in ME/CFS and being on the science and technology committee. He has asked questions about ME/CFS research in the Commons
 
Update on the APPG on ME

"Following the general election, Action for M.E. and the ME Association have provided the following update, as joint-Secretariat for the All-Party Parliamentary Group on ME.

“We understand the need to ensure that ME is kept firmly on the agenda of the new Government and that the All-Party Parliamentary Group (APPG) on ME plays and important part in this.

As is parliamentary procedure, all APPG’s are required to disband following the call of a general election and must then be reconstituted, once the election has concluded, and a new Government is in place.

Sadly, the APPG’s previous Chair, Carol Monaghan, was not re-elected as MP for Glasgow North West and therefore, we will now work to identify and secure a new Chair."

https://www.actionforme.org.uk/news/update-on-the-appg-on-me/
 
Given we’ve had an APPG since 1998 With limited success - primarily 2 general reports published saying similar things ~ 20 years apart - just reconstitution vs reconsideration of set up/ engagement would IMO have been a wasted opportunity. I don’t know how much, if any, they influenced Sajid Javid getting involved and calling for radical action. Someone on twitter posted an ad from the APPG for HIV using urgent language, With clear and simple targets and pointIng to a twitter hashtag for the Appg. HIV APPG website says:

WE ARE A GROUP OF PARLIAMENTARIANS FROM ALL POLITICAL PARTIES THAT WORK TOGETHER TO FIGHT FOR THE RIGHTS OF PEOPLE LIVING WITH HIV
....Through our work in Parliament, the All Party Parliamentary Group on HIV/AIDS works to ensure all people living with HIV are able access to affordable medicines and a decent quality of life, free from stigma, discrimination and fear
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ME Appg wording
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) seeks to improve health, social care, education and employment opportunities for people with ME and encourage biomedical research into the cause and treatment of ME.
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Since 2020 especially, communications, transparency and engagement has been limited to the minimal. Which stood in contrast with how the LC APPG was operating. This was exemplified by the fact that the severe ME inquiry (which for some reason was not in place until 2024, with only 2 APPG meetings devoted to severe ME in 26 years) was announced to the community on the week there was already the first hearing going on behind the scenes, who even attended? So better detailed comms Vs sparse minutes, more transparency where possible eg live steaming evidence hearing, and ideally APPG activity would have targets & be able to complement external campaigns working in synergy to make the area more dynamic.

We have seen John McDonnell and Jess Philips become Action for ME Parliamentary champions (John McDonnells independent article for Politico included emphasis on severe ME , research funding and Moral justice, not usually at the fore) and neither of those are shrinking violets. I have more hope for change, agenda setting and also general independence of thought & action from them than I did in 2016 when the top two officers were Jacob rese mogg and Peter bottomley, just before the APPG fizzled out 2017, although perhaps Jess P can’t now?) I would like the APPG to strike a more urgent & vibrant tone and present ME as a scandal needing addressing vs just something to quietly move forward on . We are lucky there is a lot of new MPs because ME had become quite a stale issue, despite ongoing crisis for patients. We do need an APPG with teeth, especially given the possible Only weak improvements suggested in the DHSC report
 
Cinders66 said:
Someone on twitter posted an ad from the APPG for HIV using urgent language, With clear and simple targets and pointIng to a twitter hashtag for the Appg.
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The wording may be different, but is there any evidence they achieve more in terms of influence on government or the NHS? As my mother used to say, 'fine words butter no parsnips'.

As I understand it, APPG's are simply groups of backbench MP's with an interest in a topic which can vary from trivia to very important issues. At best they are a vehicle for MP's to demonstrate to voters that they are taking their concerns seriously and taking action. Maybe a well run APPG can get a backbench debate, usually only attended by a few MP's whose constituents have pushed them to speak, and which have no power to influence policy, and writing reports which also may have no effect on anything.

I am not saying this to denigrate the splendid efforts of Carol Monaghan and the small group of MP's she led, but expecting them to move mountains, or even molehills I suspect is clound cuckoo land. We're nearly 4 years on from the NICE guideline, and as far as I'm aware it has had little effect. The APPG report from Monahan's group was excellent, and, it seems, gathers dust.

I hope I'm wrong.

I am part way through listening to Rory Stewart's autobiographical book about his experiences as a back bench MP. It reinforces my understanding that they are simply used as voting fodder to be whipped into order to vote the way their Prime Minister wants them to. They have no power to change anything.
 
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Cinders66 said:
the APPG for HIV
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From their website,

APPG OFFICERS

o Co - Chair – David Mundell MP

o Co - Chair – Baroness Barker

o Co - Chair – Steve Brine MP

o Co - Chair – Florence Eshalomi MP

o Treasurer – Lloyd Russell-Moyle MP

o Vice Chair – Lord Fowler

o Vice Chair – Lord Black of Blackwood

o Vice Chair – Lord Collins of Highbury

o Vice Chair – Baroness Wilcox of Newport

o Vice Chair – Maggie Throup MP

o Vice Chair – Peter Gibson MP

o Vice Chair – Taiwo Owatemi MP

o Vice Chair – Alison Thewliss MP

o Vice Chair – Elliot Colburn MP

o Vice Chair – Holly Mumby-Croft MP

o Vice Chair – Mark Menzies MP

the full list of the 145 members of the APPG can be seen here, https://www.appghivaids.org.uk/new-page#appg-members

and their sponsors can be seen here, https://www.appghivaids.org.uk/partners

Once the APPG for ME/CFS reaches the same sort of involvement and support, and has run for the same length of time (35 years or so), then I think we can compare relative impacts and actions.
 
JellyBabyKid said:
What was the report prior to Rethinking ME? The Gibson inquiry?
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The "Gibson Inquiry" (2005-2006) was not undertaken by the APPG on ME.

When Gibson failed to achieve the high level, independent inquiry he had promised, he set up a separate group that what was not on the "Approved List" of the APPG Register. He selected the membership and he chaired the group, himself.

It was independent of the APPG on ME at the time and the few members of the group who had remained members following publication of the report in November 2006, disbanded by May 2007 making it difficult to get the errors and misconceptions in the GSRME's report corrected.
 
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Cinders66 said:
...Since 2020 especially, communications, transparency and engagement has been limited to the minimal. Which stood in contrast with how the LC APPG was operating...
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I am afraid the Countess of Mar was partly responsible (along with Des Turner) for APPG on ME meetings no longer being open to attendance by the public. The COM had stormed out at one meeting and Chair, Des Turner threatened to call Parliament security to have certain members of the public escorted from the meeting room.

The COM did not support the policy at that time of meetings being open to public attendance and that is partly why she set up Forward-ME, from which the public were excluded and she decided which charity orgs would be invited to Forward-ME meetings.

When the new APPG on ME was convened with former MP, Annette Brook (LibDem Mid Dorset and North Poole) as Chair, the meetings of the APPG on ME were no longer open to public attendance.


Those unfamiliar with the December 2009 APPG on ME debacle, might like to read the account of John Sayer who had attended the meeting and was shocked by the behaviour of some of the group's officers:

John Sayer's report can be found after the initial commentary by Ciaran Farrell:

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

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

Report by John Sayer (Chair M.E. Support-Norfolk)
 
Dx Revision Watch said:
I am afraid the Countess of Mar was partly responsible (along with Des Turner) for APPG on ME meetings no longer being open to attendance by the public. The COM had stormed out at one meeting and Chair, Des Turner threatened to call Parliament security to have certain members of the public escorted from the meeting room.

The COM did not support the policy at that time of meetings being open to public attendance and that is partly why she set up Forward-ME, from which the public were excluded and she decided which charity orgs would be invited to Forward-ME meetings.

When the new APPG on ME was convened with former MP, Annette Brook (LibDem Mid Dorset and North Poole) as Chair, the meetings of the APPG on ME were no longer open to public attendance.


Those unfamiliar with the December 2009 APPG on ME debacle, might like to read the account of John Sayer who had attended the meeting and was shocked by the behaviour of some of the group's officers:

John Sayer's report can be found after the initial commentary by Ciaran Farrell:

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

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

Report by John Sayer (Chair M.E. Support-Norfolk)
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Wow.

Plus ça change..
 
I mentioned in another thread that someone I was good friends with at university is now in the HoL.

I'm minded to send him an email about the possibility of joining the ME APPG, but I want to send him some reasons for doing so. I know APPGs aren't for a purpose, but I want to give him an opportunity to do something, not just join a kind of support group.

What would he and they be trying to achieve? What do we want from them?

i know many want a public inquiry, but in my opinion this is currently at least unrealistic, so I won't include that.
 
JohnTheJack said:
What would he and they be trying to achieve? What do we want from them?
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What I would like them to help achieve is:

1. More and better quality research to develop diagnostic tests and effective treatments. To help achieve this I think we need appropriate ring-fenced funding for high-quality ME/CFS research, among other things.

2. Improved services based on what is actually known about ME/CFS (including the NICE gl).

3. Formal recognition from the Government of the systemic failures which have resulted in the mistreatment of people with ME/CFS.
 
This is what I'd personally like to see from a group of sympathetic politicians:

* To push DHSC, NIHR, etc to make up for years of under-funding by ring-fencing a sum of money for biomedical & epidemiological research of very high quality and congruent with patient priorities.

* To pressure DHSC and NHS England to do everything they can to ensure that all NHS clinics adopt the NICE guideline and also for those members that are MPs to pressure the leaders of the NHS trusts in their own constituencies to deliver better, NICE-congruent services that treat patients with respect and dignity and not based on preconceived theories; at the moment we have a postcode lottery with a patchwork of services, many of which are terrible and some areas have no provision at all.

* To establish links with sympathetic politicians in the devolved nations' parliaments & assemblies to help press for better services in the other nations as well (as I understand it Scotland has recently lost their only ME/CFS nurse practitioner).

* To push for a more considered approach across the NHS to very specific problems that affect severe and very severe cases, such as better help with mobility issues - local NHS wheelchair services, for instance, often refuse to help pwME - and in particular the gastroenterological problems often associated with very severe ME that require artificial nutrition. Politicians are well-placed to pressure the DHSC, NHSE and those in charge of local NHS Trusts to take a more pragmatic and sensitive approach that would help prevent future tragedies.

* To commit to raising awareness, including patients' voices, and holding those in power - both in politics and in the medical establishment - to account.
 
Dx Revision Watch said:
I am afraid the Countess of Mar was partly responsible (along with Des Turner) for APPG on ME meetings no longer being open to attendance by the public. The COM had stormed out at one meeting and Chair, Des Turner threatened to call Parliament security to have certain members of the public escorted from the meeting room.

The COM did not support the policy at that time of meetings being open to public attendance and that is partly why she set up Forward-ME, from which the public were excluded and she decided which charity orgs would be invited to Forward-ME meetings.

When the new APPG on ME was convened with former MP, Annette Brook (LibDem Mid Dorset and North Poole) as Chair, the meetings of the APPG on ME were no longer open to public attendance.


Those unfamiliar with the December 2009 APPG on ME debacle, might like to read the account of John Sayer who had attended the meeting and was shocked by the behaviour of some of the group's officers:

John Sayer's report can be found after the initial commentary by Ciaran Farrell:

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

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

Report by John Sayer (Chair M.E. Support-Norfolk)
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This certainly sounds not right and unusual.

Is the norm to have these things 'open' and is that what is used for the LC one for example and how does that help and work?

I'm intrigued to learn about what is the norm for APPGs, particularly if there are any that are operating really well and/or something that is achieving something.

I can, however, see how both leaving a gap/not having one and the alternative of having one that isn't functioning or isn't in our interests particularly could have a significant impact. It's tricky to know given 'the prevailing winds' surrounding many time periods in ME how much APPGs and their functions impact this one way or another.
 
Robert 1973 said:
What I would like them to help achieve is:

1. More and better quality research to develop diagnostic tests and effective treatments. To help achieve this I think we need appropriate ring-fenced funding for high-quality ME/CFS research, among other things.

2. Improved services based on what is actually known about ME/CFS (including the NICE gl).

3. Formal recognition from the Government of the systemic failures which have resulted in the mistreatment of people with ME/CFS.
Click to expand...

Nightsong said:
This is what I'd personally like to see from a group of sympathetic politicians:

* To push DHSC, NIHR, etc to make up for years of under-funding by ring-fencing a sum of money for biomedical & epidemiological research of very high quality and congruent with patient priorities.

* To pressure DHSC and NHS England to do everything they can to ensure that all NHS clinics adopt the NICE guideline and also for those members that are MPs to pressure the leaders of the NHS trusts in their own constituencies to deliver better, NICE-congruent services that treat patients with respect and dignity and not based on preconceived theories; at the moment we have a postcode lottery with a patchwork of services, many of which are terrible and some areas have no provision at all.

* To establish links with sympathetic politicians in the devolved nations' parliaments & assemblies to help press for better services in the other nations as well (as I understand it Scotland has recently lost their only ME/CFS nurse practitioner).

* To push for a more considered approach across the NHS to very specific problems that affect severe and very severe cases, such as better help with mobility issues - local NHS wheelchair services, for instance, often refuse to help pwME - and in particular the gastroenterological problems often associated with very severe ME that require artificial nutrition. Politicians are well-placed to pressure the DHSC, NHSE and those in charge of local NHS Trusts to take a more pragmatic and sensitive approach that would help prevent future tragedies.

* To commit to raising awareness, including patients' voices, and holding those in power - both in politics and in the medical establishment - to account.
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That's great. Thank you. In fact someone asked me a similar question the other day and I gave a similar answer.

I'm going to email him. It will presumably go to his office so no idea whether it will even get to him. And of course I don't know whether he'll be interested.

I hadn't thought of getting in touch with him before. He could be very useful if he were to become involved because he is absolutely loaded (all self-made) and has access to many others who are. But he may have too much going on already and not want to take on something else.
 
I saw somewhere (MEA I think) that prior to the election they were just starting a report into severe ME which could be important for policy making in the wake of Maeve's inquest. I'd have liked to have contributed somehow but couldn't see a way.

One other thing that disturbed me was to hear that there was also a LC APPG but the two had absolutely nothing to do with each other that really needed to change given the overlap and shared needs of the two communities.

I'd also be keen to see a new APPG back the #ThereForME campaign, which looks well constructed to me.
 
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