United Kingdom: News from #There for ME

Any news on the APPG meeting yesterday? I hope someone tried to push to discover when the delivery plan will be presented since the last mention did not commit that it would be done by the end of March as agreed previously. We need to know what the plans are.
 
article:
People with ME have been neglected by the government and society for too long
Despite three years of delays hampering the publication of a promised cross-government delivery plan on ME/Chronic Fatigue Syndrome (CFS), it is finally due to be published by the end of March this year, offering hope to thousands like me. However, there’s a catch – there will be no additional funding.
Click to expand...
The government claims it wants to help people with disabilities and chronic illnesses get back into work and off benefits, but how will this become a possibility for people with ME without adequate funding into biomedical research for a cure, treatment or even a reliable diagnostic test?

The ME community has been neglected by the government, healthcare system and society for far too long. But now this group is fighting back in an accessible way: social media.

Karen Hargrave, co-founder of #ThereForME, a patient and carer-led campaign, said the delivery plan is an opportunity for the government “to make some commitments and clear steps towards improving care, funding research and getting people the treatment that they deserve.
Click to expand...
https://national.thelead.uk/p/people-with-me-have-been-neglected
 
Robert 1973 said:
This reminds me of something I wrote in the a few years ago in the NICE Guideline thread:



I know Caroline Kingdon, as she has visited me several time to collect sample for the Biobank. I strongly agree that specialist nurses with her type knowledge, understanding and experience would be better, and less expensive, than teams of therapists.

Whether or not there is any new funding (and I sincerely hope there will be), my hope is that the current ME/CFS services will replaced by physician-led services with specialist nurses which are connected to research institutions. Sadly, I feel increasingly pessimistic about that happening.
Click to expand...
This struck a chord...
March 2025, we are working on it in Suffolk. (Caroline is a regular visitor here as well!)
Hope by end of April, all will be revealed in our personal campaign to build services for ME...
 
open



World ME Day 2025
A joint statement from organisations supporting people with ME and Long Covid
KAREN HARGRAVE
MAY 12







READ IN APP




“Today we’re marking World ME Day by sharing a joint statement from 29 organisations and smaller initiatives, all of whom work to support and advocate for people with ME and/or Long Covid.

Thanks for reading #ThereForME! Subscribe for free to receive new posts and support our work.




Today, on World ME Day, we stand with people affected by ME to deliver a simple message to the UK government: after generations of neglect and empty promises, now is the time for action.

As many as up to 1.3 million people in the UK have ME, including those affected post-Covid. An estimated one in two people with Long Covid meet the diagnostic criteria. The UK’s ME community faces a twofold threat: the loss of critical welfare benefits, and a lack of meaningful treatments to pave their way back to work.

Next month the government will publish a new Delivery Plan for ME. Yet, with no targeted funding committed, it is on course to be another missed opportunity.

The UK is a science and technology superpower, yet little has been done to harness this potential. The UK’s ME research is so poorly funded that its ‘talent pool has dried up’. Calls for funding for a dedicated research platform - a model used successfully for other conditions - have not yet been heeded.

Treatment is similarly dire: care for the sickest is unavailable or inappropriate; there are no specialist nurses; and few clinicians are equipped with the basic knowledge to provide safe care. Emerging treatments that may help manage symptoms remain largely in the private sector, available only to those who can afford them.

While the UK’s economic context is challenging, government is about choices. We ask you to choose to invest in this community’s future and its potential to contribute to our society.

Choose to build on our country’s extraordinary capacity by making the UK a world-leader in the research that ignites a global race to find a cure.

Extend a ray of hope to the teenager lying motionless in the dark, in silence, wondering if they will ever live a normal life again – and the carer that bears witness to their suffering.

Chart a new course for the doctor, powerless to help their patients, stuck in a system that doesn’t have the answers.

Today, on World ME Day, we stand with all people affected, in the face of indescribable loneliness, pain and suffering. We ask you, the UK government, to stand with us and back the Delivery Plan with the resources it deserves.

Now is the time for action.


#ThereForME

#MEAction UK

25% ME Group

Action for ME

Bury and Bolton ME/ CFS & Fibromyalgia Support Group

Cambridge ME and Long Covid Support

Crunch ME

Hope 4 ME & Fibro NI

Keyworker Petition Campaign, UK

Kirklees and Calderdale Independent ME Support Group

Long Covid Advocacy

Long Covid Kids

Long Covid Nurses and Midwives UK

Long Covid Physio

Long Covid Scotland

Long Covid SOS

Long Covid Support

ME Association

ME/CFS Friendship Group in Gloucestershire

ME Group Staffordshire

ME Local Groups Network UK

M.E. Positive, East Midlands

MERC PAG

Not Recovered UK

Oxfordshire Myalgic Encephalomyelitis Group for Action (OMEGA)

Physios for ME

Sheffield ME and Fibromyalgia Group (including long Covid)

Tymes Trust

Walsall Fibro M.E. Support”




Emailed at 12.01 this morning. Great to have such coordination of support especially in the week of the APPG meeting.

Shame S4ME is not there.

edit: this is not a criticism of the Committee and all who work for S4ME, just an expression of a concern. Very grateful to all who currently keep the forum running.

edit2; quote marks around the email #There for ME sent out. The content apart from the last 2 or 3 sentences is from # there for ME.
 
Last edited:
Thanks to #ThereForME for coordinating this. Good to have so many organisations speaking with one voice. Apart from S4ME, I note that ME Research UK and Invest in ME Research are not signatories.


Binkie4 said:
As many as up to 1.3 million people in the UK have ME, including those affected post-Covid. An estimated one in two people with Long Covid meet the diagnostic criteria.
Click to expand...
My understanding is that there is considerable doubt about the reliability of these estimates. I would have used more conservative estimates. I remember reading a recent discussion about prevalence elsewhere on S4ME but I can’t find the thread.

Binkie4 said:
Emerging treatments that may help manage symptoms remain largely in the private sector, available only to those who can afford them.
Click to expand...
I wouldn’t have included this. It may be that NHS patients are being denied medications that could help with symptom relief but I wouldn’t have referred to emerging treatments or the private sector, which is rife with people peddling snake oil.
 
Robert 1973 said:
My understanding is that there is considerable doubt about the reliability of these estimates. I would have used more conservative estimates. I remember reading a recent discussion about prevalence elsewhere on S4ME but I can’t find the thread.
Click to expand...
This recent paper by Gemma Samms and Chris Ponting estimates the prevalence in the UK as 404,000 (0.6%):
https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-025-22603-9

Discussion about that paper and prevalence estimates here: https://www.s4me.info/threads/unequ...and-2025-ponting-and-samms.37108/#post-513699

I note that the letter from Lib Dem MPs to the Health Secretary also used the 1.3m estimate: https://www.s4me.info/threads/uk-al...me-news-2020-onward.16996/page-17#post-608060
 
Robert 1973 said:
Thanks to #ThereForME for coordinating this. Good to have so many organisations speaking with one voice. Apart from S4ME, I note that ME Research UK and Invest in ME Research are not signatories.


My understanding is that there is considerable doubt about the reliability of these estimates. I would have used more conservative estimates. I remember reading a recent discussion about prevalence elsewhere on S4ME but I can’t find the thread.

I wouldn’t have included this. It may be that NHS patients are being denied medications that could help with symptom relief but I wouldn’t have referred to emerging treatments or the private sector, which is rife with people peddling snake oil.
Click to expand...
Do we have any sense of how many pwme are in receipt of pip or other benefits that might be affected?
 
bobbler said:
Do we have any sense of how many pwme are in receipt of pip or other benefits that might be affected?
Click to expand...

I think from your qoute tweet you might be implying that we could look at disability/benefits figures to help with understanding prevalence figures. But it's just not possible — there are too many complicating factors: (taking PIP as an example) lots of people choose not to claim; those over State Pension age can't claim (as a new recipient), and neither can children under 16; data on recipients broken down by conditions is based entirely on the primary listed condition and information on secondary conditions is often lost.
 
Last edited:
InitialConditions said:
I think from your qoute tweet you might be implying that we could look at disability/benefits figures to help with understanding prevalence figures. But it's just not possible — there are too many complicating factors: (taking PIP as an example) lots of people choose not to claim; those over State Pension age can't claim (as a new recipient), and neither can children under 16; data on recipients broken down by conditions is based entirely on the primary listed condition and information on secondary conditions is often lost.
Click to expand...
No I wasn’t thinking of that in order to extrapolate - I was just wondering if we knew the numbers for that figure re pip and benefits.
 
MrMagoo said:
We do know how many are affected by the proposed cuts, and the % of those with fatigue related disorders as their main reason for claiming PIP.

It’s on the benefits thread, I can’t recall the figures but we do know.
Click to expand...
Thanks yes I didn’t know if we knew by condition or just the olde ‘fatigue’ bucket stuff.

I sensed it’s not easy to get as it was already for me/cfs even when you are pretty ill, and many don’t apply or can’t just due to being too ill to ironically or impacting on health too.

and I note and was thinking of some of the points mentioned by @InitialConditions below too re: not everyone is in the situation of applying or indeed getting or being eligible.

some might have other sources like pension - depending on age and age of onset (otherwise the below is an issue otherwise that’s going to be impacted)

or ill health pension although of course isn’t that and disability insurance what the bps stuff also was about impacting and fewer professions have those options etc these days?

I’ve just spotted the German me/cfs patient research association thread which has some paper with a novel calculation for cost impacts for me/cfs and then LC separately and together and it will be interesting to have more detailed read there.
 

The importance of understanding rest​

How my experience of rest as an athlete clashed with my experience of rest as a patient​


Oonagh Cousins's avatar
OONAGH COUSINS

A really good article, some quotes:



Rest as a professional athlete

As a professional athlete, I came to understand that recovery is the foundation of all training gains. Exercise imposes stress on the body, and it’s only during recovery that repair and adaptations occur, driving improvements in fitness. Without adequate recovery, exercise simply wears the body down, leading to injuries, sickness and performance plateaus. Recovery isn’t an optional extra; it’s an essential part of the process.

Everyone in the high-performance environment understood this. Coaches regularly reminded us to “recover hard”. That meant prioritising rest in all its forms – not just physical, but also mental, emotional, and social. It was recognised that all forms of exertion draw from the same energy pool. If you rested well, you were seen as committed, focused and professional.
Click to expand...

The social understanding of rest

One unexpected aspect of my illness was the discomfort others felt about my need to rest. Although my sporting background provided me with credibility and protected me from the worst of the stigma, I still felt a persistent awkwardness around my condition and a disbelief at how much time I had to spend doing nothing. Friends stopped asking how I was or changed the subject. I found myself repeatedly explaining why I cancelled plans or couldn’t do things as I used to. There was a subtle but persistent pressure to “rally”. The gap between what I was living and what others could comfortably acknowledge was deeply isolating. Over time, friendships faded through quiet, mutual drift.

The contrast with my experience of sport was stark. Previously, an ability to rest and do less had marked me as disciplined. Now, similar behaviour, such as staying home, conserving energy and prioritising recovery, was perceived as a lack of effort. My reason for resting had shifted from optimising athletic performance to protecting my health, but society praised the former and judged me for the latter.
Click to expand...
 
Trish said:

The importance of understanding rest​

How my experience of rest as an athlete clashed with my experience of rest as a patient​


Oonagh Cousins's avatar's avatar
OONAGH COUSINS

A really good article, some quotes:
Click to expand...
this mirror being held up to those around us by those who are able to be heard and get away with it is so important. Unpicking and stepping around those incorrect understandings of quite what the illness is would be another one I would add to the list too.

I do think that this type of thing really is something that we could focus on more - being careful for it to strike the right tone obviously
 
bobbler said:
this mirror being held up to those around us by those who are able to be heard and get away with it is so important. Unpicking and stepping around those incorrect understandings of quite what the illness is would be another one I would add to the list too.

I do think that this type of thing really is something that we could focus on more - being careful for it to strike the right tone obviously
Click to expand...
There just needs to be some voices saying - “rest, honestly you really do need to” because it’s never explicit in the 10,000 versions of “how to pace” which get endlessly tinkered with.
 
You must log in or register to reply here.
Back
Top Bottom