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

I've emailed my MP to ask him to attend. He's LibDem Ben Maguire.

 

I wrote to my MP Gen Kitchen (Wellingborough) and invited her to attend the Dec 17th APPG inaugural meeting.

I am quite curious to know whether she did, is there any way to find out?

 

Looking at the page https://appgme.co.uk/who-we-are/ it seems that Action for ME and the MEA are continuing to provide secretarial support for the APPG, but if I remember correctly before ‘minutes’ were a bit hit and miss appearing on line.

 

Well its good of them and I expect those involved must be volunteers and might even have ME themselves so all is forgiven.

I notice the chair and officers have changed since I wrote, I suppose that was a result of the meeting and new parliament. Might be a good excuse to write to my MP again and let her know about the changes.

 

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.