#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

Sean said:
I am as concerned about the outcome of the forthcoming Delivery Plan as anybody. We have been badly burned way too any times by the authorities and their 'reforms'.

But we do need to hold the bulk of our fire until we see the contents and detail.

Some in the patient community thought the IOM report and NICE guidelines were going to be disasters, and some even tried (or at least wanted) to get them stopped. But they turned out to be major, albeit imperfect, steps forward in the reform process.
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Afaiu, the protest regarding NIcE was regarding the set up of the panel. This was in a targeted way from #MEAction only, so was unsucccessful in creating change. It’s this set up, or atleast the refusal of a committee this "balanced" to agree recommend physician-led services, consider properly severe ME care etc, which Is seemingly at the heart of some of some of the problems now.

I’m not convinced that what the MEA is calling for is medical services or meets my needs:

“Where a referral service currently exists they must have the staffing and facilities to diagnose and manage ME/CFS that is consistent with all the very clear recommendations in the new NICE guideline on ME/CFS”

& the guideline isn’t that new anymore. The ME association patient survey of 1000 early on, had the majority just seeing it as “a step in the right direction” rather than “good” or something to spend a decade fighting to get set in place for a long time ….

Rather than saying patients should not be calling for funding because what is being asked for behind the scenes isn’t actually the medical care patients want, we should be asking representatives to represent what patients want/ feel they need and we could (probably too late for this specific thing) survey different groups, as well as study what the nhs provides for others, so that this isn’t just assumption but truly reflects the community itself. .
 
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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.
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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.
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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.
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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.
 
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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.
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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.
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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.
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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.
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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?
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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.
 
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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.
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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.
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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.
 
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