United Kingdom: ME Association news

ME Association:

New downloadable booklet for Carers!

The ME Association and the 25% ME Group have worked together to create this new guide for carers, especially carers of people with Severe and Very Severe ME.

Caring is vitally important but it can be quite isolating and, if you are new to caring, it can be hard knowing what to do. We understand the difficulties of being a carer and are here to help.

Caring for Caregivers is free to download, and provides practical information about support and finance for unpaid carers.

In order to better capture the current experiences of unpaid carers of people with severe and very severe ME/CFS, the 25% ME Group and the ME Association looked at focus groups in 2024 covering healthcare, social care and caring in general.

As we find when working with people with severe ME/CFS, the carers were keen to share their experiences to aid and inform others. The information they provided and experiences they kindly shared have been invaluable in the production of this booklet.

Download: https://meassociation.org.uk/v9cv

#MECFS #pwME #MyalgicE #SevereME #Carers #UnpaidCarers #CarersWeek2026
 
From X - Elisabeth Klaar

People may remember my lobbying of the @MEAssociation regarding making online meetings accessible to people who can't speak by enabling the text chat function as standard in Zoom/Teams.


Much time has been spent writing emails, with me reminding them forcefully of...


... their legal duties under the Equality Act 2010 (providing reasonable adjustments for disabled people - ie their core constituency and raison d'etre).

They have finally agreed and committed to this in writing to me.

Small steps but at least some progress.

/end of thread
 
Dolphin said:
ME Association:

New downloadable booklet for Carers!

The ME Association and the 25% ME Group have worked together to create this new guide for carers, especially carers of people with Severe and Very Severe ME.

Caring is vitally important but it can be quite isolating and, if you are new to caring, it can be hard knowing what to do. We understand the difficulties of being a carer and are here to help.

Caring for Caregivers is free to download, and provides practical information about support and finance for unpaid carers.

In order to better capture the current experiences of unpaid carers of people with severe and very severe ME/CFS, the 25% ME Group and the ME Association looked at focus groups in 2024 covering healthcare, social care and caring in general.

As we find when working with people with severe ME/CFS, the carers were keen to share their experiences to aid and inform others. The information they provided and experiences they kindly shared have been invaluable in the production of this booklet.

Download: https://meassociation.org.uk/v9cv

#MECFS #pwME #MyalgicE #SevereME #Carers #UnpaidCarers #CarersWeek2026
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I have glanced through this. It looks helpful for family or friends in the UK who are unpaid carers for a sick family member who needs significant care. It's mostly about services available to support carers emotionally, socially, at work, practically and financially.

I was misled by the title, thinking it would be suitable to give to the care agency I employ to help me with showering and a few household tasks. There is nothing in it about the specifics of how to do practical caring roles for a pwME as far as I can see. Nothing informing them about what ME/CFS is and how this impacts practicalities of providing personal care.
 
Edit: deleted half written word.
Trish said:
I have glanced through this. It looks helpful for family or friends in the UK who are unpaid carers for a sick family member who needs significant care. It's mostly about services available to support carers emotionally, socially, at work, practically and financially.

I was misled by the title, thinking it would be suitable to give to the care agency I employ to help me with showering and a few household tasks. There is nothing in it about the specifics of how to do practical caring roles for a pwME as far as I can see. Nothing informing them about what ME/CFS is and how this impacts practicalities of providing personal care.
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That's a shame I was also thinking how useful it would be to have some practical information on how people do this.
 
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This post has been copied to the thread about the app. Please go there to discuss it.

The PROMS autono-me Elaros app is now available to download. If you buy the paid subscription you can download reports of the data you input.

The third pic is “who is this app intended for” the final bullet is “clinics and health insurance companies, globally, who want to purchase a cost-effective licence for their patients”
 

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From Facebook:

The Techtonic: AI and new research breakthroughs bring fresh hope to millions living with ME/CFS

Student magazine The Techtonic, from City St George’s University of London, has written a piece covering developments in ME/CFS, including an interview with MEA Hon. Medical Adviser Dr Charles Shepherd.

"Dr Charles Shepherd, Honorary Medical Adviser to the ME Association, stresses that diagnosis within three months per the 2021 NICE guidelines and structured energy pacing are essential.

“Only around 5 to 10 per cent of people with ME/CFS actually return to full normal health. Once you have this diagnosis, it is sadly likely to be a lifelong medical condition,” said Dr Shepherd.

He added that widespread gaps in GP training continue to leave patients without adequate care."

Read more: https://thetechtonicmag.com/ai-and-...gs-fresh-hope-to-millions-living-with-me-cfs/

#MECFS #pwME #MyalgicE #Research #RosettaStoneProject
 
Jonathan Edwards said:
What is 'structured energy pacing' I wonder?

I am not sure it will help if people go along to theirGP and say that they have ME/CFF because AI says so.
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Unstructured would be just leaving it to chance and not really paying attention, I suppose.

That article is a nothing burger.
Would love to find out what these bio markers based on gut bacteria, immune profile and patient symptoms” the AI is turning up with accurate precision, given how there aren’t any bio markers at present.
 
Dolphin said:
“Only around 5 to 10 per cent of people with ME/CFS actually return to full normal health. Once you have this diagnosis, it is sadly likely to be a lifelong medical condition,” said Dr Shepherd.
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We need patient advocates to communicate the likelihood of recovery much better than this. The evidence we have points to people who could be labelled with ME/CFS at 6 months having a very good chance of recovering in the following couple of years. We've seen that in prospective studies such as the Dubbo Study. Recovery from 'post-infection symptoms that fit ME/CFS criteria at six months' is the most likely outcome. And it requires nothing more from the patient than waiting (and possibly not repeatedly inducing PEM, although we don't know that).

When our patient advocates don't bother to explain that recovery is the most likely outcome in the early years, it feeds the story that COFFI and the BPS crowd and all the various brain re-training proponents selling therapies are putting about, that they have 'the key' to recovery. It makes people vulnerable to their marketing. And it allows rubbish research with participants with early stage illness and no controls to be taken as evidence that a treatment works.
 
Hutan said:
We need patient advocates to communicate the likelihood of recovery much better than this. The evidence we have points to people who could be labelled with ME/CFS at 6 months having a very good chance of recovering in the following couple of years. We've seen that in prospective studies such as the Dubbo Study. Recovery from 'post-infection symptoms that fit ME/CFS criteria at six months' is the most likely outcome. And it requires nothing more from the patient than waiting (and possibly not repeatedly inducing PEM, although we don't know that).

When our patient advocates don't bother to explain that recovery is the most likely outcome in the early years, it feeds the story that COFFI and the BPS crowd and all the various brain re-training proponents selling therapies are putting about, that they have 'the key' to recovery. It makes people vulnerable to their marketing. And it allows rubbish research with participants with early stage illness and no controls to be taken as evidence that a treatment works.
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Long Covid study posted this week:
“Symptoms persisting beyond two years showed little further resolution”
https://s4me.info/threads/differenc...tudy-in-japan-2026-sugiyama.51056/post-704264

Note: This isn’t specific to those with an ME/CFS diagnosis.

Also found children had a better prognosis.
 
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