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

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/

 

Thank goodness our elections aren't like those in the USA. Having people canvassing for two years would drive me insane!

 

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.

 

A sad loss for the ME cause in Parliament.

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?

 

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.

 

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.

 

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.

 

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

 

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?

 

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 ?