UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward
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BrightCandle
Senior Member (Voting Rights)
The more you learn a researchers story the more you realise their relationship with the disease is personal and a close relationship has ME/CFS. It is what worked in Germany recently to get funding, its why Sajid Javid did what he did to push the DHSC process to start. They need to be in the right position (Head of health) for it to work so far but I guess a Prime minister would likely set policy too but most other positions would not help.
Given the prevalence of the disease the chance a minister for health has a close personal relationship with the disease is quite small, something like 1 in 25 to 1 in 50. Then there is the chance they accept the disease is real as a cofounding factor. We get a new health minister every few years on average. So ~50-100 years from Savid to the next one on average but with the prime minister as a second potential source maybe 25-50 ish.
OrganicChilli
Senior Member (Voting Rights)
Empty Stands are collaborating with English teams, too.
Empty Stands – Fans with ME/CFS, Long COVID & Post-Vac
emptystands.me
personally I don’t think this is likely in this era, because most very severe m.e, from what I’ve seen, is the result of poor care, bad management and the wealthy & elite are probably the least likely to get the type of harm that the NHS - with its particular faults - has done - widespread contemptuous dismissal, psychologisation or inappropriate management. They’re the most likely to be Able to avoid serious harm if they are off to a private dr, put on convalescence, getting all the testing that do show issues and have resources to facilitate this.
The nearest we had to a big name was Esther rantzens daughter in the 90s who went (seemed to fast track access) into queens hospital (as a private patient, I assume) for their stabilise then rehab stuff and later became associated with controversial treatments and other diagnoses. Esther used her position to make noise, but this was in a pre social media context of no other campaigning and m,e framed by the medical establishment and their sheep, the wider media, as “contested” and a grey area. Sean o Neil, with tragic circumstances and media coverage showed what media support can do but he wasn’t a famous person and was too exhausted/ saddened to continue. Sajid Javid’s intervention, the directly involved politician in more recent times, hasn’t been pursued, and he didn’t exactly go all out, in comparison to what he set up for long COVID. Yvette cooper foreign secretary is a big political name, and a former patient managed as a moderate by Dr William weir, but has never really done anything & as someone said, waiting on this connection factor isn’t really an option.
Talking to Dr Shepherd, pre DHSC delivery plan publicatIon, when MEA was refusing to share any of the fringe public campaigns, I disagreed with his stance that the gvt were only going to respond to discussions in the tent, and his clear reluctance to be seen as joining campaigns. I think it’s arguable that a time when we Did have Sean O’Neils media support, Sajid Javid “kind of” onside and were needing a life-changing, generation-saving upgrade, was precisely when having the utmost pressure applied & red lines for what would be acceptable & clear demands, wider than the #thereforeme campaign, would have been useful. Any patient-led campaign is undermined if the 2 major charities have a position of reluctance to challenge/willingness to facilitate anything.
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The billboards and millions missing campaigns in the UK were not large enough or sustained to be considered tried, tested, and failed. This is because the main charities don’t campaign, they facilitate the establishment, and patient efforts become ‘fringe’ and don’t generate enough people power to be newsworthy. The billboards campaign was a combination of LC and me, and when long C had two significant funding calls, it may not have been the best way to get me funding. The #millionsmissing campaign didn’t make specific funding demands, and the protests in London weren’t sufficient to make mainstream news. Patients were enthused by millions missing, but it fizzled.
We haven’t had clear objectives for the me community, especially around research funding. The #Thereforme was the best-organised campaign, but it only had impact because it was given media time due to publicity around Maeve Boothby’s inquest and Neil’s inquest. Unfortunately, Sean O’Neil, who had the contacts, has stepped back.
We haven’t delivered what the community needs partly because We’ve faced significant challenges and aren’t in the powerful position of established illnesses but Also the resistance was small-scale & Charities and influencers chose collaboration over confrontation and promoted that
NelliePledge
Senior Member (Voting Rights)
The report on severe/very severe situation has been published by AFME/25% group. It is good that the report has gone ahead however it was started under the aegis of the APPG and was their main planned activity for the last year. If the charities have had to pick up taking the lead it begs the question what is the APPG doing.
Andy
Senior Member (Voting rights)
Are you thinking of Forward ME Trish? The APPG, like all others, is for MPs from any and all political parties to come together and, in theory, collaborate on a particular issue. You are correct to say there is no parliamentary funding or staff made available for any APPG, so it often comes down to relevant charities to supply staff when they can.
Yes, sorry, being muddleheaded. Lack of sleep.
Chandelier
Senior Member (Voting Rights)
The next APPG on ME meeting will be on 2nd September
The next APPG on ME will be held on September 2, from 1pm-2pm. The meeting will discuss the key findings of our Big Survey.
www.actionforme.org.uk
The next APPG on ME meeting will be on 2nd September
25 August 2026
The APPG on ME will be meeting on 2nd September from 1pm-2pm in Room T, Portcullis House to discuss the initial findings of Action for ME’s Big Survey and explore what action members can take to redress the issues identified.
With over 5,000 respondents with either ME and/or Long COVID the Survey provides a powerful report on the experiences of children and adults with ME/LC and their families.
The 2025 Big Survey is a collaboration between Action for ME and the Discovery Research Platform for Medical Humanities at the Institute for Medical Humanities (IMH), Durham University. Postdoctoral researcher, Dr Katherine Cheston, is working with Action for ME to help support the survey's development, data collection, and subsequent analysis.
APPG members will consider the findings and use them to shape actions for the forthcoming year.
The APPG will also hold an Extraordinary General Meeting (EGM) to appoint a new Vice Chair as Jo Platt MP has been appointed as a Parliamentary Private Secretary (PPS) to the Prime Minister, Andy Burnham in July.
You can invite your MP to attend: https://members.parliament.uk/members/commons
We also have a template letter that you can download and send to your MP.
NelliePledge
Senior Member (Voting Rights)
Sorry to whinge AFME I understand organising these things isn’t a piece of cake but realistically what MP is going to be able to slot something in their diary with one weeks notice.
On the other hand they really really need to get Jo Platt to commit to use her new position to spend a few minutes to talk to the Prime Minister about very severe/severe situation.
On the other hand they really really need to get Jo Platt to commit to use her new position to spend a few minutes to talk to the Prime Minister about very severe/severe situation.