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

Andy said:
APPG on ME - Severe ME Inquiry

The All-Party Parliamentary Group on ME (APPG) has launched its inquiry into Severe ME.

Action for M.E., the ME Association, and the 25% M.E. Group will be working closely to support the APPG throughout the inquiry’s duration.

The purpose of the inquiry is to gather evidence to inform a chapter on Severe and Very Severe ME to append the ‘Rethinking ME’ report, published in May 2022.

https://www.actionforme.org.uk/news/appg-on-me-severe-me-inquiry/
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Following the announcement of the UK's General Election yesterday, AfME have posted an update, which includes,

"From Friday [24th May], Carol Monaghan, Chair of the APPG and the Inquiry Panel, will no longer be an MP as will be the case for the other Panel members; APPGs also cease to exist. Sadly, this means that the APPG's Severe ME Inquiry will not continue, despite it already having held its first hearing session.

Following the general election, we will work collaboratively to reconstitute the APPG. This will require an inaugural meeting to be held and new officers elected. An application will be submitted to register the APPG and the APPG will only exist once the Registry Office has approved its inclusion on the APPR Register. The Guide to the Rules for APPGs can be found HERE."

https://www.actionforme.org.uk/news/general-election-what-happens-now/
 
Andy said:
Following the announcement of the UK's General Election yesterday, AfME have posted an update, which includes,
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To clarify for those of us not up with UK Parliament operations, this also from that AfME article
Parliament will be dissolved on 30 May meaning all MPs will lose their parliamentary status and their access to parliamentary resources.
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So, there's no suggestion there of Carol Monaghan or others currently on the APPG not standing for re-election, although of course re-election is not assured.
What a shame about the Severe ME Inquiry. Hopefully the work can be picked up again.
 
The election is only 6 weeks away, so there will be a new crop of MP's the day after the election. Realistically, with the summer recess in July and August and party conferences in September, we're unlikely to see APPG's re starting until at least October, I suspect. As for the delivery plan, who knows.
 
Previous APPG reported membership and their status following the General Election results.

Carol Monaghan - Lost her seat, no longer an MP
Baroness Scott of Needham Market - Member of the House of Lords, unaffected.
Baroness Finlay of Llandaff - Member of the House of Lords, unaffected.
Stephen Metcalfe - result yet to be announced at time of posting.
Sharon Hodgson - Retained her seat.
Jason McCartney - Lost his seat, no longer an MP.
James Davies - Lost his seat, no longer an MP.
Debbie Abrahams - Retained her seat.
Ben Lake - Retained his seat.
Hywel Williams - Did not stand for re-election.
Fleur Anderson - Retained her seat.

MPs reported as attending the last APPG AGM earlier this year.

John McNally - Did not stand for re-election.
Angus Brendan MacNeil - Lost his seat.

Results taken from the BBC News website.

I have no further knowledge of if, or when, the APPG might be restarted.
 
Yesterday Action for ME gave a reply on XTwitter regarding a query about the APPG

“We have already sent briefings to parliamentary candidates & will be directly contacting Secretaries of States and Shadows of the following departments: DHSC, DWP and DSIT, once the positions are announced

We will also be working closely with the @MEAssociation to reconstitute the APPG as soon as possible & will share an update on this when we can.”
Many thanks, Action for M.E.
 
Peter Trewhitt said:
With so many new MPs there is opportunity for interesting more MPs in the APPG. When will be a good time to try to interest our new MPs in ME/CFS and Long Covid?
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I don't know if it would be the best strategy, but I would imagine that perhaps sending something soon, congratulating them on being elected and highlighting the issues that are important to you would be a good start. At this stage we don't know whether we will see the APPG reconstituted, but mentioning that there has been an APPG for ME/CFS previously and that you hope that your MP will take part in it improves the chance that it will be and they will take part. Should you have capacity for it, following up with them everytime there is a meeting scheduled will help add to the pressure for them to be concerned about ME/CFS.
 
Andy said:
I don't know if it would be the best strategy, but I would imagine that perhaps sending something soon, congratulating them on being elected and highlighting the issues that are important to you would be a good start.
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I agree, but would make it brief and straightforward for now. New MPs will feel as if they've been hit by a tornado, and even experienced ones are starting a new job.

The economy's in such bad shape that it might be worth highlighting the economic harm caused by long Covid—including the fact that previously healthy people are likely to keep developing it and that public money is being wasted on ineffective clinics using discredited approaches. I think that's the approach I'll take with my MP, who's moving from opposition to government.
 
Sharon Hodgson
Debbie Abrahams

possibly candidates for ministerial posts of some kind. Which depending on the role could in itself be good but obviously new backbenchers are needed for the APPG

Alex Chalk who was involved in the House of Commons debates but then promoted into government has lost his seat so he won’t be involved.
 
Plus even if they don’t reconstitute the APPG which I think would be a mistake AFME has created the role of Parliamentary Champion which presumably could be adopted for more MPs

my candidate who has expressed an interest in getting involved was elected so I will be in touch with her to try to get her plugged in with AFME asap
 
Andy said:
Carol Monaghan - Lost her seat, no longer an MP
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Peter Trewhitt said:
A sad loss for the ME cause in Parliament.
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Yes. She took quite a lot of flak from psychosomatic proponents while pushing the ME/CFS cause forward. I don't know what she intends to do now, but perhaps there is a role for her in ME/CFS and Long Covid lobbying? Perhaps she might be willing to be a Trustee of an ME/CFS charity?

I heard that there was a Long Covid APPG. To me, it would make sense for there to be a combined Long Covid +ME/CFS APPG. Given the increasing likelihood that few people will be diagnosed with ME/CFS without also having a Long Covid diagnosis, ME/CFS is increasingly niche, while LC is a huge societal issue.
 
Hutan said:
Yes. She took quite a lot of flak from psychosomatic proponents while pushing the ME/CFS cause forward. I don't know what she intends to do now, but perhaps there is a role for her in ME/CFS and Long Covid lobbying? Perhaps she might be willing to be a Trustee of an ME/CFS charity?

I heard that there was a Long Covid APPG. To me, it would make sense for there to be a combined Long Covid +ME/CFS APPG. Given the increasing likelihood that few people will be diagnosed with ME/CFS without also having a Long Covid diagnosis, ME/CFS is increasingly niche, while LC is a huge societal issue.
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I’m not 100% sure this is sensible to combine with long vivid at the moment

I’ve dithered with lots of pros and cons (which depend on betting on certain things like whether govt is focusing on long covid re sickness going up and ‘sorting it’)

but I think at the moment I err on the side of us needing an ME/CFS APPG fir 2reasons:

1. those who were harmed by or been throughthe GET and CBT generation and have had it eg decades need something different currently to newer diagnosed. Though there is obvious common ground. Plus the risk of encouraging lump the two putting those who GET harmed back into GET being more likely if it’s a combined anything

2. the ME/CFS variant of ‘long covid’ has predictably been left as the ‘and other’ after lung or cardiac specialist pathways - and those who were in those or in hospital often respond to rehab. So it operating the other way around ie having an ME/CFS APPG and those who get it eventually diagnosed after covid being part of that seems better than naming long covid because also

3. long covid as pasc and other names haven’t been clear on defining those who just have a surprisingly long fir them illness of 6weeks, or several months but can start building up after 6months (sounds a bit closer to what used to be called post viral in Uk) . This means quite a different demographic.

So I think whilst all knowing (although do different strains matter?) it’s the same original illness of covid it’s policy-wise a bit of a wide pot already, which when you throw it in with ME/CFS which already has the trying to unlump from chronic fatigue issue would cause problems.
 
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.
 
bobbler said:
I’m not 100% sure this is sensible to combine with long Covid at the moment
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Issues worth thinking about. But, it's going to be a lot easier to get MP's interested in Long Covid. Not a lot of point having a 'pure' ME/CFS APPG that just has two MPs chatting to each other.

Also, MPs in a Long Covid APPG need to be informed about ME/CFS and the history, which is highly relevant to ME/CFS-like Long Covid. People who understand ME/CFS need to occupy this space, as otherwise it will be left to proponents of holistic care with sleep hygiene and GET.
 
Hutan said:
Issues worth thinking about. But, it's going to be a lot easier to get MP's interested in Long Covid. Not a lot of point having a 'pure' ME/CFS APPG that just has two MPs chatting to each other.

Also, MPs in a Long Covid APPG need to be informed about ME/CFS and the history, which is highly relevant to ME/CFS-like Long Covid. People who understand ME/CFS need to occupy this space, as otherwise it will be left to proponents of holistic care with sleep hygiene and GET.
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Yes it needs to be thought about. I don’t know enough about how APPGs work on the ground and dynamics that happen in these to know whether 2 ME/CFS MPs would get drowned out if they were either trying to get an issue prioritised or tweak a broader issue to also be accurate to ME/CFS in a bigger group too.

does anyone know much on the long covid APPG that exists?

potentially the one useful area could be in research being biomedical but again how refined a definition of long covid the worry is the ‘just fatigue’ types get seen as less urgent depending on how broad that bucket is (and the dilemma there where people choose between stating bigger numbers but that includes those who might be 6weeks vs tighter definition of debility level but smaller numbers) inputting into said research focus.

and would/could ME/CFS end up being seen by such a group as just a segment of the ‘fatigue segment’ of covid and even a segment of the PEM segment of that. And I’m wary of establishment tendency to want to ‘lump and dump’ into categories things that have different needs but get approached in a lowest common denominator way.

What is the term now defined as for covid-related me/cfs ? And is there one that really differentiates it other than some accepting ‘some with the fatiguing type might have PEM’ and do we know the figures / do they collect them for this type still ill at 2yrs +?

It feels this question might be a give away as to whether there might be a separate need. And how is that best net if things get that desperate- I don’t know what parliamentary champions or if other alternatives can do and whether that precludes being part of a covid group

as you say it’s an issue that might recur and maybe covid will remain the most common source of ME/CFS
 
Hutan said:
Issues worth thinking about. But, it's going to be a lot easier to get MP's interested in Long Covid. Not a lot of point having a 'pure' ME/CFS APPG that just has two MPs chatting to each other.

Also, MPs in a Long Covid APPG need to be informed about ME/CFS and the history, which is highly relevant to ME/CFS-like Long Covid. People who understand ME/CFS need to occupy this space, as otherwise it will be left to proponents of holistic care with sleep hygiene and GET.
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Does NZ or other countries have similar things and are they separate/combined ie any stories of where it’s been tried and the hows and what happened?
 
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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I think a charity role would be well-timed and amazing.

Does some more ethical form or ‘lobbying’ exist , or are you thinking something less specifically directly political ?
 
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