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

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 ?

 

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.

 

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

 

Darren Jones is the MP for Bristol North West, in case anybody who reads this is in his constituency.

 

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/

 

Typo here - should be 'an important part'.

 

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:

ME Appg wording

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

 

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.

 

Even a prime minister can't change healthcare practice. They can damage it, create conditions to improve it, announce priorities they hope will steer it, but they haven't the power to enact change.

To be fair, that's probably not a bad thing.

 

What was the report prior to Rethinking ME? The Gibson inquiry?

 

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.

 

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)