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

Interesting to see 'DecodeME results' billed for May 14th!!
It might happen.

 

@Andy Do you know if the expectation is that some results will be published by 14 May, or Chris intending to talk to the APPG about the results prior publication?

 

No, I don't expect results, complete or otherwise, to be published by then. I'm afraid I don't know what Chris may or may not intend to say.

 

It's maybe more likely to relate to the article mentioned here:
https://www.thetimes.com/uk/healthcare/article/me-cfs-sufferers-ignored-nhs-care-lottery-bxzlxmrm2
Also on UK info thread .

Also members of the LC APPG may not have heard that much about DECODE yet

 

Wrote to my MP yesterday after learning of the date of the next APPG meeting asking him to attend.
I based the letter on the template- first time I've done that but I was exhausted- altering or adding my own information in several places. It did make it a lot easier than starting from scratch. I added that with 3 weeks notice, I hoped his diary could accommodate this.

Was amazed to open my first email this morning to find it was from a Parliamentary assistant saying MP would endeavour to attend subject to any conflicting Parliamentary business- as much a yes as could be expected I think. He's new to Parliament so hope he may get involved in ME. I also hope the 14th May meeting gets a good attendance and that the APPG gets fully involved.

 

I've sent the following:

Dear Ben Maguire,

I am writing to you as your constituent to urge you to join the APPG on ME (myalgic encephalomyelitis) and help fight for those like myself who are suffering from ME.

The next meeting of the APPG will be held jointly with the APPG on Long Covid, on Wednesday 14th May at 5pm; there will an opportunity to attend remotely. Please contact the office of APPG Chair Jo Platt for the invitation.

jo.platt.mp@parliament.uk

The APPG on ME is also holding a briefing session on the government's planned welfare reforms on Wednesday 23rd April at 6pm. Contact Jo Platt's office for more information.

I have had ME since 1995 and, although I am often quite badly affected, I am fortunate not to be one of the very seriously affected. I have a Masters degree in science, yet have hardly been able to work in my chosen field due to my illness. I am now retired, but due to a worsening of the illness I was unable to complete the forms to obtain benefit for the last six months before retirement.

ME is a chronic post-viral illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. It is estimated that there are at least 1.3 million people in the UK living with ME or ME-like symptoms.

Unfortunately, the healthcare provided to these patients is shockingly poor, and most remain without the support they desperately need. Doctors and other health professionals generally remain very poorly informed, so that eventually most people with ME simply avoid seeking help.

There is in any case no known effective treatment yet for the condition, largely due to the influence of a group of psychiatrists who have wrongly labelled it as psychological.

It is probable that many die due to lack of support and/or lack of income.

I hope that you are able to attend the meeting on my behalf.

Thank you.

Yours sincerely,

 

I noticed the misspelling of 'opportunity' but not the missing word 'be' in 'there will an opportunty'.

I also added Jo Platt's email address and the full spelling of ME as myalgic encephalomyelitis.

 

Reminder that next APPG for ME (joint with long covid) is next Wednesday 14th May, not too late to write to one's MP asking her/ him to attend.

Template letter is available here

https://appgme.co.uk/contact-your-mp/.

Please can we get as many of our MPs there as possible.

The agenda will include:

• Similarities and differences between ME and Long Covid – Prof David Strain, Health Research Advisor, Gov
• Where are we now – ME research & DecodeME results – Prof Chris Ponting, Edinburgh University
• Where are we now – LC research & React results – Prof Danny Altmann, Imperial College
• Dr Binita Kane, Manchester University Foundation Trust
• Ensuring effective working between both APPGs
• Next steps – Jo Platt
• Welfare reforms: Impact on People with ME

Very glad Chris Ponting will be there to report on Decode ME.

 

Thanks. I've emailed mine.

 

Excellent @Eleanor. I hope there is a good turnout.

 

I'm not sure where to post this but I think we should know this progress is being made. Hopefully this may be repeated at APPG level.

Tessa Munt MP has written a letter requesting ring fenced funding for the ME delivery plan which has been signed by all 72 Libdem MPs.

It's being tweeted about on X. Could anyone on X join in?
(My spacing)

Secretary of State for Health and Social Care
Department of Health and Social Care
Ministerial Correspondence and Public Enquiries Unit
39 Victoria Street
London SW1H OEU
7th May 2025

Dear Wes,

As World ME Day on Monday 12 May approaches, we - all 72 LibDem MPs - write to raise our concern about a lack of funding for the forthcoming Final Delivery Plan for ME/CFS and to request a meeting to discuss
this further.

Following the Covid pandemic, 1.3 million people in the UK are estimated to be living with Myalgic Encephalomyelitis (ME) or ME-like symptoms, with one in every two people with Long Covid meeting the
diagnostic criteria. Women are disproportionately affected People with ME have one of the lowest qualities of life of any condition but have faced decades of insufficient care and minimal research funding. The sickest patients are bedridden in darkened rooms, sometimes unable to speak or swallow. There is as yet no cure and a lack of effective treatment. Yet despite this, over the past 12 years the Government has invested just £8 million in ME research. There is every reason why people affected by ME, including our constituents, feel left behind. Many patients and their carers now also face losing
critical benefits which they rely on to live in dignity.

Whilst this Goverment has said that "in the worst cases" NHS care for ME/CFS has "left some people feeling that their illness is not recognised", we believe this is a significant understatement. A 2023 public consultation made clear how the health system is failing people with ME with inappropriate attitudes, a lack of compassion, inaccessible care and poor implementation of NICE guidance. A recent 'Prevention of Future
Deaths Report termed care for the most severely affected 'non-existent. Our inability to provide meaningful care for people with ME is harming our society as well as those directly affected. While the Government has recognised the "cost to health and care services and the wider economy through, for example loss of work and an increased benefits bill", neither the DHSC nor DWP has a current estimate of that cost.

The annual economic impact of ME was estimated at £3.3bn in 2014/15, based on a longstanding pre-pandemic estimate of 260,000 people affected. Following the pandemic, the number of people living with ME-like symptoms as a result of Long Covid has risen significantly. With this, and a decade
of inflation, this figure will now be very much higher.

The Final Delivery Plan for ME/CFS is an opportunity to recognise the depth of previous failings and demonstrate this Government's commitment to finding solutions. The Final Delivery Plan aims to boost research, improve attitudes and education, and better the lives of people with ME. None of these admirable
goals will be achieved without ring-fenced funding.



There is a second page and the 72 Libdem signatures. Am struggling to get it across from X but will edit it in if successful.

 

Good for Tessa Munt (Wells and Mendip Hills), who is the LibDem lead on the APPG, for rallying her party colleagues.

And thank you to any S4ME members who may have been in contact with her.

 

I should like to express my thanks to Ed Davey, until a few months ago my MP, for his consistent help across the last 7/8 years. Great Westminster Hall speech, signed David Tuller's letter, writing to civil servants, learning and understanding.

Glad there are reinforcements and hope that next week's APPG meeting produces further progress.

edit: I do hope we have someone in Tessa Munt's constituency on here who could write a letter of thanks.

edit 2: link omitted

 

Has anyone heard any news out of the APPG meeting yesterday? Will be interesting to hear how it went and more detail on the discussions and presentations

 

I came here to ask this very question!

 

I too would be very interested to hear this.
Would also be interested in knowing whether Libdem members attended in force after requesting funding for the ME delivery plan, and how the other parties were represented.

edit: cross posting with @JellyBabyKid. Obviously lots of interest here.

 

some really important and well-made points in this.

I particularly like the 4th para down which calls out the cheek of playing down the issue/how bad what is being offered (or not offered) is and its impact - its mind-blowing some think like this to write that phrase when you think about it:

"Whilst this Goverment has said that "in the worst cases" NHS care for ME/CFS has "left some people feeling that their illness is not recognised", we believe this is a significant understatement. A 2023 public consultation made clear how the health system is failing people with ME with inappropriate attitudes, a lack of compassion, inaccessible care and poor implementation of NICE guidance. A recent 'Prevention of Future Deaths Report termed care for the most severely affected 'non-existent."

 

This is actually the best case. No one has had a better outcome than this, because the illness is literally not recognized as it actually is. Completely detached from reality.