United Kingdom: ME Association news

[Dolphin]

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

 

[Amw66]

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

 

[Ash]

Congratulations to Elizabeth.
But oh dear to MEA.

 

[Trish]

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

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.