United Kingdom: ME Association news

[Utsikt]

Can instructions about pronunciation be given to ChatGPT etc?

Maybe try something like «always pronounce the individual letters of words that are written with only capital letters?»

 

[Binkie4]

Maybe try something like «always pronounce the individual letters of words that are written with only capital letters?»

I probably ought to let the MEA know but I have medical appointments tomorrow and probably Thursday. Will do it when I can.

 

[Dolphin]

I much prefer the text-to-speech software Emerge Australia use for their research digests to the one the MEA uses.

 

[Binkie4]

I much prefer the text-to-speech software Emerge Australia use for their research digests to the one the MEA uses.

Do you have a name for it @Dolphin? To pass on.

 

[Dolphin]

Do you have a name for it @Dolphin? To pass on.

aidocmaker.com
https://www.emerge.org.au/researchdigest/research-digest-issue-115/

The MEA software makes a mess of MEA itself. Also NHS.

 

[MrMagoo]

I was invited to join the ME Association “ME Connected” today via insta stories. I clicked the link (for research purposes of course) it took me to the Discord site but then it couldn’t complete the task as the address was invalid.

So that’s working well.

 

[Dolphin]

The MEA is currently assessing a research grant application that will be assessing proteomics in ME/CFS.

(No other info is given)

https://meassociation.org.uk/2025/06/medrxiv-preprint-charting-the-circulating-proteome-in-me-cfs/

 

[DigitalDrifter]

The list of key bullet points at the start does not mention PEM. It waffles around the effects of activity without making PEM clear as a distinguishing feature

The ME Association advocate for Ramsay-ME (muscle fatigueability) not PEM-ME. The charity was around before the term PEM had even been coined.

 

[Hutan]

The MEA has been promoting an app, Open-OH, that appears to be planned to be offered by the NHS and that includes the Tyson/Gladwell PROMS. Elaros is the app developer. Information and discussion on this thread:

The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

 

[Sasha]

I'm looking for some posts where people were talking about a survey that the MEA were now doing of its members to get feedback on the organisation. People here were complaining that non-members couldn't take part. But I can't find the posts - can anyone help me?

 

[JellyBabyKid]

I'm looking for some posts where people were talking about a survey that the MEA were now doing of its members to get feedback on the organisation. People here were complaining that non-members couldn't take part. But I can't find the posts - can anyone help me?

It was all moved to one thread:

https://www.s4me.info/threads/the-e...-yorkshire-rehab-scale-and-open-oh-app.39324/

 

[Trish]

I'm looking for some posts where people were talking about a survey that the MEA were now doing of its members to get feedback on the organisation. People here were complaining that non-members couldn't take part. But I can't find the posts - can anyone help me?

It was all moved to one thread:

That's a different one.

The one referred to was, I think, this one on the thread about MEA governance:
https://www.s4me.info/threads/unite...n-governance-issues.42093/page-68#post-612815

 

[JellyBabyKid]

That's a different one.

The one referred to was, I think, this one on the thread about MEA governance:
https://www.s4me.info/threads/unite...n-governance-issues.42093/page-68#post-612815

Sorry! Didn't read this properly . Thanks for paying proper attention Trish

 

[Trish]

Sorry! Didn't read this properly . Thanks for paying proper attention Trish

Easily done with so many worrying things happening at the MEA.

 

[Nightsong]

"SNOMED CT Coding: Optimising ME/CFS and Long COVID Care":

https://meassociation.org.uk/2025/06/snomed-ct-coding-optimising-me-cfs-and-long-covid-care/

 

[Amw66]

"SNOMED CT Coding: Optimising ME/CFS and Long COVID Care":

https://meassociation.org.uk/2025/06/snomed-ct-coding-optimising-me-cfs-and-long-covid-care/

@Dx Revision Watch

 

[NelliePledge]

MEAssociation home page
Announcement of ME Connected - a community they have launched on discord

The ME Association - The ME Association

The ME Association provides support, research, expert information and a helpline for the community of people affected by ME/CFS

meassociation.org.uk

Not posted as a recommendation but for information. I don’t use discord and haven’t gone into this community so don’t know anything other than what is in the announcement.

 

[Jonathan Edwards]

Not posted as a recommendation but for information. I don’t use discord and haven’t gone into this community so don’t know anything other than what is in the announcement.

I had a quick look but to sign up I would have had to reveal my identity even if indirectly.
It seems to be a place where people swap feel good platitudes - at least for the moment. A sort of British Blackbird Rising with tea and window cake maybe.

 

[MrMagoo]

MEAssociation home page
Announcement of ME Connected - a community they have launched on discord

The ME Association - The ME Association

The ME Association provides support, research, expert information and a helpline for the community of people affected by ME/CFS

meassociation.org.uk

Not posted as a recommendation but for information. I don’t use discord and haven’t gone into this community so don’t know anything other than what is in the announcement.

I tried the other week but the link didn’t work.
Discord has a reputation for being a cesspit, but I guess like any board, it depends which part you frequent. Parts of Reddit are outrageous, other parts are very dull.

 

[Trish]

Some posts have been moved to a new thread:

2025: UK MEA Article and Video: ME/CFS: What you need to know about the disease

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