United Kingdom: ME Association news

The ME Association awards Decode ME the Howes Goudsmit Award 2025

The ME Association are pleased to announce that we have awarded DecodeME the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study.

The Decode ME team is led by Professor Chris Ponting (Chair of Medical Bioinformatics, University of Edinburgh & Decode ME Chief Investigator), Sonya Chowdhury (CEO of Action for ME) and Andy Devereux-Cooke (Patient Representative and Co-Investigator at DecodeME) and they represent a much wider team of individuals involved in the DecodeME project.

The DecodeME team have informed the MEA that they intend to use the £5,000 prize money on ME/CFS research that builds on DecodeME with the current first priority being a whole genome sequencing project, Sequence ME and Long Covid.
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The ME Association awards Decode ME the Howes Goudsmit Award 2025 - The ME Association

The ME Association are pleased to announce that we have […]
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From Facebook:
Have Your Say on Disability And Employment/Volunteering - Survey open until 22nd September!

We’re running an updated survey on ME/CFS and Long Covid to respond to proposed welfare reforms. Whether you can work, can’t, or struggle to stay in work—your experience matters. Help shape our policy and response to government plans.

Take part: https://meassociation.org.uk/srrq

#MECFS #pwME #MyalgicE #WelfareReforms #TakingThePIP
 
I've just done this survey. It took a couple of minutes and only involves ticking boxes, there's no free text to have to think about. The questions are quite easy to answer.

I don't know the aim or likely value of it, but I did find it accessible.
 
Kitty said:
I don't know the aim or likely value of it, but I did find it accessible
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I’ve been so put off by the lengthy questionnaires coming from some parts of the MEA I’d got used to skipping these sorts of requests. Perhaps a knock on of that sort of work they haven’t considered?

But thanks to your words @Kitty I took a look and completed it. Very quick and simple.
 
Over on Social Channels…
The MEA proudly announced that Charles has given input/advice on an article. They have said to read the article you should “search the article name in the graphic” so they are promoting an article, their involvement, but not providing a link.So far, so annoying.

The “punchline” to these jokes is that the article is in a magazine for over 50s called Rest Less. So we have this huge MEA ad saying “Rest Less: ME causes, treatment ” etc
It’s causing chaos on socials. Even Whitney Dafoe has commented. Why are the MEA like this :banghead: :mad:

Article https://restless.co.uk/health/healthy-body/me-cfs-causes-symptoms-and-ways-to-cope/
 

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Jaysus.

And when you follow the link, half the page seems to be taken up with adverts for private healthcare.

The ME/CFS info is better than I expected, though I set the bar pretty low. It quotes research findings we haven't really seen evidenced convincingly, and for some unfathomable reason it cannot resist mentioning CBT, even though it comes with a caution.

But context is all.
 
Kitty said:
Jaysus.

And when you follow the link, half the page seems to be taken up with adverts for private healthcare.

The ME/CFS info is better than I expected, though I set the bar pretty low. It quotes research findings we haven't really seen evidenced convincingly, and for some unfathomable reason it cannot resist mentioning CBT, even though it comes with a caution.

But context is all.
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The cynic in me wonders whether it’s a weird recruitment drive for the members website. Why such fanfare that CS had input into a nothing article on an unknown webpage.
 
DigitalDrifter said:
I can't listen to this for health reasons but would like to, can anybody who has heard it, summarise what was said? In my experience ME patients in both sides of the pond, in all health care systems, are getting a raw deal and facing disbelief.
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I just asked ChatGPT and it said the main points were around lack of diagnostic test, reframing ME/CFS from BPS to medical, lack of specialist services, lack of research, lack of assistance with benefits and social care. In summary it said UK and US patients all pretty much faced the same hurdles but in different systems, so I guess overall you’re no better off in either country.
 
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