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

This EDM has been tabled by Morrison, Tom Liberal Democrat, with most of the sponsors also The Liberal Democrat’s. I cannot see his , name on the APPG “who are we”, unless new, so this might be an independent Liberal Democrat’s initiative vs the APPG. But I can’t see the name of The Liberal Democrat John Milne MP who wrote the recent letter, signed by some of the APPG, either. I don’t think the APPG has met since earlier in the year and I think they are meeting this week.
 
I would feel embarrassed if I had recommended my MP sign an EDM which was not endorsed by the entire APPG.

If it is partisan then it risks not bringing government with it.

On the other hand, we have always been a movement of reasonable protest.
 
In addition to the six sponsors , 5 The Liberal Democrat’s, these MPs have signed to support the motion so far .

Smith, Cat
Labour
Signed on 9 September 2025
Lancaster and Wyre

Savage, Dr Roz
Liberal Democrat
Signed on 9 September 2025
South Cotswolds

Dyke, Sarah
Liberal Democrat
Signed on 9 September 2025
Glastonbury and Somerton

Harding, Monica
Liberal Democrat
Signed on 9 September 2025
Esher and Walton

Jones, Clive
Liberal Democrat
Signed on 9 September 2025
Wokingham

George, Andrew
Liberal Democrat
Signed on 9 September 2025
St Ives

Moon, Perran
Labour
Signed on 9 September 2025
Camborne and Redruth

Morello, Edward
Liberal Democrat
Signed on 10 September 2025
West Dorset

Chamberlain, Wendy
Liberal Democrat
Signed on 10 September 2025
North East Fife

Maguire, Helen
Liberal Democrat
Signed on 10 September 2025
Epsom and Ewell

Milne, John
Liberal Democrat
Signed on 10 September 2025
Horsham

Slade, Vikki
Liberal Democrat
Signed on 10 September 2025
Mid Dorset and North Poole

Cane, Charlotte
Liberal Democrat
Signed on 10 September 2025
Ely and East Cambridgeshire

Berry, Siân
Green Party
Signed on 11 September 2025
Brighton Pavilion

Jardine, Christine
Liberal Democrat
Signed on 11 September 2025
Edinburgh West

I think in terms of realpolitik, labour MPs may be reluctant to challenge their government on something that it is claiming to have delivered for this community but obviously the more broad support the better. Action for ME & The ME association have urged People to write to their MPs to sign it, with The ME association providing an email template.
 
New minutes from September 10


"SC provided an update from DHSC. While the APPG/members/some stakeholders* feel
there are many shortfalls in the Plan, the focus must be on delivering all the actions
identified while working to advocate for improvements through other channels to
enhance what is being done for people with ME. There will information to be shared publicly soon. Members are also awaiting an update from DHSC on how they will be engaged and updated in progress."

I did a quick read.
Disappointing that the charity led APPG has gone back to form of not really taking a tough stance. It looks like they’re just going to focus on implementation of the plan instead of challenging the government, the EDM was mentioned but it looks like an unrelated sideshow.

There is reference to working with the government in the future or something and I think the government has been crafty in trying to involve the APPG in with the plan , because doing so has not benefited pwME, It’s not resulted in a good plan, but it’s resulted in, I would argue, a compromised APPG that’s easy to quieten.

There was only 3 MPs in attendance

I think that the idea that after 3 years of talks what the DHSC need is more evidence about the severely affected is Laughable.

"There has been no response from the letters from the APPG to Ministers Dalton and Vallance which were actions that JP progressed from the last meeting."

There is discussion elsewhere about why Action for ME can’t fundraise successfully etc but this type of leadership is imo why.
 
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Action for ME have been highlighting the collection of parliamentary champions as their big advocacy tool. I don’t know what the below could actually mean.
“while working to advocate for improvements through other channels”
 
Robert 1973 said:
I only counted 2 and 1 peer. That’s really disappointing but perhaps an accurate reflection of how important many people perceive the issues to be.
Click to expand...
They say there was other reasons but severe m.e has been very infrequently covered by the APPG & on the last severe m,e meeting 2013 there were just 2 MPs in attendance so it does reflect not just indifference but also a failure to grasp the situation (which I personally see as scandalous) or a willingness to tackle it. given that it part involves challenging the elite and esteemed medical establishment & part involves addressing political failures.

This is not Not remotely aided by the bland tone of the template letters the charities put out for patients to send to drive interest, which do nothing to highlight the suffering of severe ME, the neglect of decades ( the CMO of Report 2002 was framed as something that was supposed to be addressing years of harm and neglect ) or the fact that most severe m.e is the result of iatrogenic harm - eg the medical professional they saw either didn’t diagnose or give appropriate guidance & support, gave them inappropriate advice or promoted treatment approaches now almost universally recognized as harmful.

In my view, there'no way people fighting against other scandals would be framing things the way our m.e orgs do, they have been meeting with politicians behind the scenes since 1998 yet refuse to powerfully advocate for patients and drive any justice agenda. No one is going to see this as a long drawn out scandal of harm & neglect that needs urgent addressing on par with other health scandals on the back of how our charities frame things and unless they change what they do, we are stuck because they’re the ones who have the influence.
 
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