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

Draft Minutes: APPG on ME meeting held this week, 17th December

https://appgme.co.uk/wp-content/uploads/2024/12/2024-12-17-APPG-DRAFT-Minutes.docx

 

Thanks @Dolphin that was just what I was looking for.

I did write to my MP again and pointed her to Chris Pontings excellent piece in theconversation and the APPGs own report Rethinking ME.

Spoiler: email to my MP

Dear Gen Kitchen, I am just writing to update the information I gave you in my previous email about the officers of the APPG on ME / CFS which held its inaugural meeting on Dec 17th 2024. As you might expect the officers have now changed.

The chair is now Jo Platt MP (Lab, Leigh and Atherton) who campaigns on longCOVID after contracting COVID in 2020.

Debbie Abrahams MP (Lab, Oldham East and Saddleworth) remains an officer and is known for seeking to defend the integrity of the NHS, which may be related to the historic struggle to ensure ME/CFS is understood correctly and not mischaracterised as a psychological condition by psychologists with links to the medical insurance industry in the USA.

Tessa Munt MP (LibDem, Wells and Mendip Hills) and Lord Offord of Garvel (Con) are officers, maintaining and reemphasising the cross party nature of the group, which is appropriate because this kind of condition can affect anyone, without respect for political or geographical boundaries.

Though I have observed people often remain unaware of the nature of this kind of condition until it touches them or someone they care about but when it does they realise how important and tragically commonplace it really is and how those who have it are so disabled they fall through the cracks in the pavement and are not heard from again.

As Prof Chris Ponting put it, there is a hidden city of disabled here in the UK. If you are interested to understand the current state of play, his article can be found at theconversation.com under the title "Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal."

The APPG report "Rethinking ME" can be found at the appgme.co.uk website, FYI. I leave you to google those yourself for reasons of cybersecurity.

Yours sincerely ...

 

This is good to see. Jo Platt is also the chair of the Long COVID APPG and according to her statement had LC herself.

According to the latest Parliamentary rules for APPGs they need four officers:

And the minimum number of members is 20:

 

From what I’ve read, Jo Platt appears to be a good choice as chair, and good that she is also chair of the APPG for LC. However, the fact that she had LC herself is not necessarily positive or negative. In some cases (eg George Monbiot) having LC appears to have led to greater sympathy, empathy and understanding. In other cases (eg Paul Garner) it appears to have had the opposite effect.

 

I meant only that it was good to see that the APPG has finally been reconstituted! Should have put a line break between the first two sentences...

 

Jo platt statement re. Long covid appg.

My main concern in having an ex long COVID sufferer run both, is having ME/CFS and long covid needs & struggles overly blended, when LC is “new” early stage, far better supported preventing the decades of suffering and disability that is the m.e scandal. They may at onset be the same or similar but the cohorts differ. Blending in advocacy sometimes erases this, perhaps the fact they're keeping separate is reassurance.
The ME struggle has been longer & more deadly & the wounds deeper & more irreparable. Separately, LC advocacy's angle is on prevention, early management & back to work support & ME advocacy must emphasise m.e scandal & harm situ, justice , severe ME care, reparative research effort, exertional damage research. We are not just starting off and seeking “belief” support or early intervention to allow a natural high chance of recovery which might be how some LC is more framed, and we know this is how the nhs want to just proceed with “management”, as if harm hasn’t happened. The advocacy and urgency for m.e must reflect this.

 

Do we know how many members there are? Have we seen the list of the minimum of 20 members?

I wrote to my MP who wrote that his team would apply for him to be a member. I would like to confirm and then thank him if confirmed.

 

ME Research UK:

New All Party Parliamentary Group on ME formed
https://www.meresearch.org.uk/new-all-party-parliamentary-group-on-me-formed/

Article summarises minutes of first meeting with plans for the future.

 

Copied post and some subsequent posts moved to this thread

APPG minutes from 5th March:

https://appgme.co.uk/wp-content/uploads/2025/03/2025-03-05-APPG-on-ME-Minutes.pdf

 

Thanks for posting the minutes @Nightsong. They need thorough reading but noticed immediately how few MPs attended. I wish the apologies had been listed so that I would know if my MP had even sent an apology in response to my request (again) that he attend. It is hard especially with new MPs to gauge the level of interest.

 

I see a disappointing lack of any real substance. We need a physician led hospital based service with domiciliary outreach, not evening out of community-base dross.

I am sorry to be blunt but this is no use to people with ME/CFS. It seems that not a single person in the group understands or has voiced the need together the basics right. I fear that nobody in the group actually understands the problem.

 

Exactly that. We need them to argue at minimum for a pilot project in a couple of big teaching centres.

 

Agree. And will be more than relieved to be proven wrong by one of them making clear that they are being specific in asking for this

but I’m worried if we have other people signing this off as a service ‘in our name’ for us when they are actually signing off something which hides consigning us to ‘no medical care’ yet again

but I’m just seeing them getting dragged along by the tide of people who benefit from the status quo using attrition and overwhelm (by making any change like pulling teeth then rushing very deliberately any time given for proper ‘what we need’ beyond what they know would be fair for those living with ME due to the situation we are put in)

I say this because anyone who things leaving those same people ‘in charge’ as if a little change/compromise (but it isn’t actually because the guideline was a compromise so this is more of the same refusing to change stubbornness then selling ‘it could be worse’ as ‘a favour’) will mean things will miraculously change in the right direction as things go forward.

But the nature of their role/remit and training and turkeys don’t vote for Xmas means they aren’t interesting in anything other than treating US as the problem ‘to be managed’ rather than the underlying condition and helping get to the bottom in getting the basics research or helping us needs, and that other illnesses have

I think bluntly we are deliberately being kept from having access to medics, particularly doctors, and I suspect these days now that it is a post-truth/can’t prove if you can’t access someone who will look at you situation we are being deliberately put in. The ‘problem’ of the illness being treated as something properly medical that will ever be researched taken seriously or things to change so we have a chance of a life has been disappeared because…. motivational OTs or physios will be the only ones who will be allowed to ‘assess’ is and their remit only allows them to gaslight us or do certain therapies that will never work.

And we will never be able to find a medic to even look at any with ME because they are taught it’s their remit (even if what they do doesn’t and can never be of any help) including GPs and whatever else we might actually have alongside.

 

APPG minutes say: “The economic position of around £23.5bn cost to the economy of ME and ME-like symptoms was highlighted.”

Does anyone know where this figure comes from?

 

£23.5bn is in excess of other figures I've seen for ME/CFS in the UK. On the Government's interim delivery plan web pages they cite a report that estimated a minimum cost of £3.3bn:

I suppose it may have been derived by adding together ME/CFS & LC estimates; there was a UCL analysis that suggested for long COVID "the costs associated with working days lost could potentially cost the economy up to £20billion".

An up-to-date economic effects analysis would be useful, I think; there have been reasonable studies for other countries, such as this Australian one from 2023.

 

OK, as an update to my first line I have read Charles Shepherd's letter to Ashley Dalton MP: ME Association - The MEA writes to Ashley Dalton MP – the DHSC... | Facebook

and to be fair it specifically mentions:

and

among other worthy points

 

You are being fair and the letter is good but I don’t think that the MEA have been consistent in their calling for physician led services, which the NICE guidelines fall short in requiring. and it may well be that they are being influenced by forums like this which are formng a consensus on this rather than having had this as a Repeated and consistent call over years, there certainly haven’t been campaigns…. in my opinion calling for implementation of the Nice guidelines is not the same as calling for physician lead services and a medical model, nursing and inpatient care units for the severe. I'm sure I saw Charles say once that the severe should have access to seeng a doctor at at least once , which is far removed from ongoing medical care which would be the norm for other condition, serious talk about nurss being involve, again is the norm for other conditions, is relatively new and there was nothing along these lines in the DDP draft plan.