United Kingdom: ME Association news
- Thread starter Peter T
- Start date
There is another one (apologies if it has also been posted already) 'Move for ME'
NB this isn't an MEA campaign but them flagging one that seems to be by someone else:
One of the slides says "every act represents the freedom and participation that those with ME are unable to achieve"
I get the nuance intended to be conveyed here by adding that, perhaps if being pedantic switching the last word 'achieve' for 'enjoy' maybe, I don't know.... but there are earlier posts, the last one of which does emphasise they are no longer able to do any of the walk, run etc in the text so is quite nuanced.
I have noticed that there was an earlier post at the start of May, which has a picture of the campaigner here for info:
and one in April too, which has more context and nuance again:
NB this isn't an MEA campaign but them flagging one that seems to be by someone else:
for those not on fb the cut and paste without the slides:
Calling all friends and family of the ME Association
Catherine Asta, who has ME/CFS, has launched ‘Move for ME’ to increase awareness of ME/CFS this May and help raise £10,000 for the MEA!
Get involved however you can—walk, stretch, dance, picnic, or share a cuppa with friends. Wear blue and spread the word
Donate or learn more: https://www.justgiving.com/campaign/moveforme
Inspired by her daughter, she shares: "She asked me “if you could swap bodies with me and be in my body for the day, what would you do?” I replied saying “I’d go for a run, swim, hike up to the moor and mooch around our town. I’d get a dog and take it for long walks and I’d meet up with my friends in a cafe or go explore somewhere new”'
"I cannot walk, run, swim, hike, cycle, travel, explore, gather or move the way I once could and it's the small things that I miss the most. So this ME Awareness Month, I’m asking you to MoveForME."
#MoveForME #pwME #MECFS #MEAwarenessMonth
One of the slides says "every act represents the freedom and participation that those with ME are unable to achieve"
I get the nuance intended to be conveyed here by adding that, perhaps if being pedantic switching the last word 'achieve' for 'enjoy' maybe, I don't know.... but there are earlier posts, the last one of which does emphasise they are no longer able to do any of the walk, run etc in the text so is quite nuanced.
I have noticed that there was an earlier post at the start of May, which has a picture of the campaigner here for info:
and one in April too, which has more context and nuance again:
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This might be better on the Bath and North Somerset Clinic page, but as it is about the LC clinic consultaiton and it seems a very short deadline (particularly given it is perhaps pwme or at least LC) for the survey, and is on the MEA fb I have put here for now
There are 2 comments there, but I had to put 'all comments' on to see them.
Is this the same clinic that has Pete Gladwell?
There are 2 comments there, but I had to put 'all comments' on to see them.
Is this the same clinic that has Pete Gladwell?
MrMagoo
Senior Member (Voting Rights)
I mean, I suppose if an individual has started a “move for ME” campaign that’s one thing, but why are all these campaigns a bit…off?
Walk for ME…ok someone else does the walk, except sometimes it’s someone recovered
Move for ME except you’re also supposed to do something moving
Seeds of Hope, heavy on the actual seeds and the general “hope”
Shouldn’t people be doing stuff more like “I’m doing a marathon pushing a bed, because my friend/sister is bedbound”
I think something like a social media campaign “25” and we all change our picture to a 25 to raise awareness of the 25% who have severe/very severe and zero medical support would be fairly easy/inclusive/effective and people doing their own challenges could wear a 25. People need to focus. These ideas wouldn’t make a decent campaigning organisation/charities shortlist in my experience.
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Yes it becomes tricky/more unfortunate when you see them in a 'collective' (I hesitated pasting in case of guns being jumped and hoped the NB that it was an individual would be prominent enough, but it is context for eg the twitter response to the colouring in one perhaps to know what else is also on there recently) as carefully crafted nuance in one can then get obscured by patterns across a few that miss said angles
- and of course individuals who are pwme are doing brilliantly for setting something up, and won't know what others are doing to see how they all are side-by-side each other so to speak so it is an awkward conversation.
I guess there might be ways to 'lead the way' on messaging if a main charity without critiquing as a future thought?
Kitty
Senior Member (Voting Rights)
I agree, it's great when people raise money for charity in ways that are meaningful to them. In this one, the aim is clear, it highlights what she's lost to the disease, and it doesn't patronise other people with ME/CFS.
Unlike the MEA, who seem to be developing a specialism in tone deafness. They have marketing professionals to design their campaigns, yet a woman who's very unwell manages comes up with something better.
They could at least send out chia seeds, so we could have our hope on toast. The bag of John Innes No 1 we'd need for flower seeds weighs about 20 kilos.
MrMagoo
Senior Member (Voting Rights)
I think the message is a bit complicated when it’s “someone else doing a thing a pwME can’t but also pwME can join in doing a thing” can we do it or not? what is ME taking away from us?
Also probably just rankles as it reminds me of the Neil Riley carry on “we need to move!” Stop making us do things, and go run a GWAS or something. I’m not helping the MEA raise 10k so they can spend it on colouring sheets and 100+ question PROMS.
Also probably just rankles as it reminds me of the Neil Riley carry on “we need to move!” Stop making us do things, and go run a GWAS or something. I’m not helping the MEA raise 10k so they can spend it on colouring sheets and 100+ question PROMS.
dratalanta
Senior Member (Voting Rights)
If anyone is still donating to MEA, why? What useful work is it doing?
Collating service reviews is, as others have said, an important indictment of the shocking standards of NHS provision. But surely this activity is fatally undermined by MEA giving the providers of the bad services a tool which distorts user experience but which could be used to claim that bad reviews are unrepresentative?
MEA decided that being grown ups meant constructive engagement with the Big Bad Wolf. Inevitably, the Big Bad Wolf has eaten grandma and is eyeing its next meal. What big PROMs you have, grandma…
No doubt there are still sensible people involved, but their only reasonable course now is to flee from the house “in any way you can” and to come back with a (metaphorical) axe.
Collating service reviews is, as others have said, an important indictment of the shocking standards of NHS provision. But surely this activity is fatally undermined by MEA giving the providers of the bad services a tool which distorts user experience but which could be used to claim that bad reviews are unrepresentative?
MEA decided that being grown ups meant constructive engagement with the Big Bad Wolf. Inevitably, the Big Bad Wolf has eaten grandma and is eyeing its next meal. What big PROMs you have, grandma…
No doubt there are still sensible people involved, but their only reasonable course now is to flee from the house “in any way you can” and to come back with a (metaphorical) axe.
Dolphin
Senior Member (Voting Rights)
Research: Pregnancy in ME/CFS: Stage II Funding
The faMEly study: A Study of ME/CFS, Family Planning, Pregnancy and Raising Children, has reached the end of its initial funding period and Stage II funding has now been granted by the ME Association.
Find out more about the study aims, key findings to date and the next steps:
meassociation.org.uk
Thank you to our incredible supporters and fundraisers. It's because of you that we are able to continue funding research into ME/CFS and Long Covid.
#MECFS #MyalgicEncephalomyelitis #Pregnancy #Research #RamsayResearchFund
The faMEly study: A Study of ME/CFS, Family Planning, Pregnancy and Raising Children, has reached the end of its initial funding period and Stage II funding has now been granted by the ME Association.
Find out more about the study aims, key findings to date and the next steps:
Research: Pregnancy in ME/CFS: Stage II Funding - The ME Association
The faMEly study: A Study of ME/CFS, Family Planning, Pregnancy and Raising […]
meassociation.org.uk
Thank you to our incredible supporters and fundraisers. It's because of you that we are able to continue funding research into ME/CFS and Long Covid.
#MECFS #MyalgicEncephalomyelitis #Pregnancy #Research #RamsayResearchFund
Facebook:
Quotes:
H4ME Bulletin: The DHSC Delivery Plan includes a commitment for NHS England to create a template service specification on the management of people with ME/CFS. Once finalised, this template will directly influence how NHS services are commissioned and delivered across England, making it a significant opportunity to improve care for everyone living with ME/CFS.
The ME Association's Healthcare for ME team, working alongside our Medical Adviser, is actively participating in the Health Services Subgroup convened by Forward-ME. This group is engaged in ongoing discussions with the Department of Health and Social Care (DHSC) on the development of a national template service specification for ME/CFS.
At this stage, we are unable to share the contents of the draft specification, as it remains under development.
Read the full statement: https://meassociation.org.uk/80rp
#health #MECFS #MyalgicEncephalomyelitis
___________________
There was also a ministerial action point in the DHSC Delivery Plan to explore the need for some form of national specialist referral service for people with very severe ME/CFS.
As noted in this posting, the Forward ME sub group on NHS services is working with the DHSC and NHS England on the other action point re developing a template service specification for people with mild and moderate ME/CFS. We have been successful in persuading them to include those with severe ME/CFS in this template. The work on this is now quite advanced.
Unfortunately, we have been unable to obtain any meaningful information regarding what is happening to the development of some form of national referral service for people with very severe ME/CFS and who is involved. And in view of the recent ministerial announcement relating to a delay in this work it appears that very little progress has been made.
Following communication with the DHSC DP team we will soon be submitting information on the numbers that may be involved along with the definition and medical assessment of people with very severe ME/CFS, especially in relation to nutritional assessment and hospital admissions.
Two other groups are working on separate inputs regarding the management of those with very severe ME/CFS and the provision of information and advocacy for people who are having urgent problems relating to hospital admissions
So there is a lot of important work in progress relating to the care and management of people with very severe ME/CFS
Dr Charles Shepherd
Hon Medical Adviser MEA
Quotes:
ME Association
rnpeSosdtoM9taa4 6i9 5h78008c0ah7c3872ty13aca5i:m512f27af 27 ·H4ME Bulletin: The DHSC Delivery Plan includes a commitment for NHS England to create a template service specification on the management of people with ME/CFS. Once finalised, this template will directly influence how NHS services are commissioned and delivered across England, making it a significant opportunity to improve care for everyone living with ME/CFS.
The ME Association's Healthcare for ME team, working alongside our Medical Adviser, is actively participating in the Health Services Subgroup convened by Forward-ME. This group is engaged in ongoing discussions with the Department of Health and Social Care (DHSC) on the development of a national template service specification for ME/CFS.
At this stage, we are unable to share the contents of the draft specification, as it remains under development.
Read the full statement: https://meassociation.org.uk/80rp
#health #MECFS #MyalgicEncephalomyelitis
___________________
There was also a ministerial action point in the DHSC Delivery Plan to explore the need for some form of national specialist referral service for people with very severe ME/CFS.
As noted in this posting, the Forward ME sub group on NHS services is working with the DHSC and NHS England on the other action point re developing a template service specification for people with mild and moderate ME/CFS. We have been successful in persuading them to include those with severe ME/CFS in this template. The work on this is now quite advanced.
Unfortunately, we have been unable to obtain any meaningful information regarding what is happening to the development of some form of national referral service for people with very severe ME/CFS and who is involved. And in view of the recent ministerial announcement relating to a delay in this work it appears that very little progress has been made.
Following communication with the DHSC DP team we will soon be submitting information on the numbers that may be involved along with the definition and medical assessment of people with very severe ME/CFS, especially in relation to nutritional assessment and hospital admissions.
Two other groups are working on separate inputs regarding the management of those with very severe ME/CFS and the provision of information and advocacy for people who are having urgent problems relating to hospital admissions
So there is a lot of important work in progress relating to the care and management of people with very severe ME/CFS
Dr Charles Shepherd
Hon Medical Adviser MEA
MEA article:
Health Services Update: Draft National Service Specification for ME/CFS
By Karren Winters-Cavalot / May 7, 2026The DHSC Delivery Plan includes a commitment for NHS England to create a template service specification on the management of people with ME/CFS. Once finalised, this template will directly influence how NHS services are commissioned and delivered across England, making it a significant opportunity to improve care for everyone living with ME/CFS.
The ME Association's Healthcare for ME team, working alongside our Medical Adviser, is actively participating in the Health Services Subgroup convened by Forward-ME. This group is engaged in ongoing discussions with the Department of Health and Social Care (DHSC) on the development of a national template service specification for ME/CFS.
At this stage, we are unable to share the contents of the draft specification, as it remains under development. However, we have contributed detailed feedback alongside charity representatives, clinicians, and people with lived experience. Our input has spanned a wide range of areas, including but not limited to clinical coding, medicines management, and the needs of those most severely affected. You can read about a previous meeting with the DHSC and NHS England to discuss progress on the preparation of a clinical care pathway here.
We will continue working with lived-experience advocates, clinical experts, and charitable organisations to push for the changes that people with ME/CFS need and deserve. The template remains under revision, and we are committed to engaging throughout this process to ensure that the final version reflects the realities of living with ME/CFS and addresses patients' needs.
Jonathan Edwards
Senior Member (Voting Rights)
There may be a lot of activity, but as Charles himself admits there is precious little evidence of anything useful being achieved and worrying signs that advice is encouraging things to continue in the old mould.
I am still not convinced that the advocacy charities have a grasp of the medical problem.
I am still not convinced that the advocacy charities have a grasp of the medical problem.
Sasha
Senior Member (Voting Rights)
This is an extraordinary position for patients to be in. What can be done? Do we need some sort of medical summit with charities invited? With some sort of moderated/facilitated discussion?
I remember reading years ago at various structured ways of trying to move impasses forward, such as identifying the minimum level of agreement on contentious topics where full agreement wasn't possible, and I wonder if a similar approach might help - and might help get to the bottom of the disagreement.
MrMagoo
Senior Member (Voting Rights)
I don’t think the charities want to criticise the NHS.
I don’t think they have a firm “ask” in terms of what they want the NHS to provide, so they’re stuck in the “don't rock the boat, otherwise they will fall out with us, might as well keep what we have it’s better than nothing”.
Kitty
Senior Member (Voting Rights)
We don't want anything new or unusual, just the same as everyone else: consultant-led clinics with physicians and specialist nurses. Any other 'discipline' is unnecessary and inappropriate.
Yup. And they need to realise it's worse than nothing.
It offers no treatment or benefits, it puts patients at risk of harm—directly but also indirectly, by ensuring doctors are kept away from patients and therefore learn nothing about the disease. And it's a criminal waste of taxpayers' money.
Sasha
Senior Member (Voting Rights)
You might be right, but I can't see why they wouldn't want to criticise the NHS when it's doing a bad job for PwME.
And yet they're being handed a firm ask on a plate. I just don't get it.
MrMagoo
Senior Member (Voting Rights)
I don’t think they see it as doing a bad job, just that they need to do “better” and we know how the MEA wants to achieve that. More PROMS.
Where are they being handed a firm “ask” on a plate? We might have ideas here, but we are not “all patients”. The ME community doesn’t have a firm ask. Plenty in the community don’t mind what the charities or NHS are doing (not sick long enough to have realised it’s bunkum). Even ThereForME which is aimed entirely at getting the NHS to provide care for us doesn’t agree with what we think.
Sasha
Senior Member (Voting Rights)
Good point. Maybe we need a summit to win hearts and minds of other PwME?
MrMagoo
Senior Member (Voting Rights)
To convince them that there’s no point having an ME service?
To convince them the current system is a fallacy and helps mainly the NHS employees more than patients?
To convince them that a specialist consultant under which discipline should be in charge? Neuro? Infectious Diseases?
There isn’t a firm ask.