United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

BBC Radio One:
The Going Home programme has a slot where a listener comes on each show (Monday to Thursday) and nominates a song to play and the reason why.

I’m just listening to the Thursday programme and they have Kelse (sp?) on who has supposedly been talking about her battle with ME. She is doing the Manchester marathon this weekend and has built herself up for it.

 

ME? Marathon????

 

Merged thread

Article BBC: 'Marathon will be victory lap after ME diagnosis'

'Manchester Marathon will be victory lap after ME diagnosis' - BBC News

 

I’m glad she has recovered, and that she doesn’t claim to have the cure.

The title is a bit misleading by BBC. It’s after having recovered, not after getting the diagnosis.

 

"Scientists call for research hubs to solve mystery of ME" (The Times, April 27 2025)
Chronic fatigue syndrome affects about 400,000 people in the UK, but there is no diagnostic test or effective treatment

Link | Archive link

 

I can't get archive.ph links to work these days. I'm not sure if the site is down here in the UK or whether it's something in my setup. I use 12ft.io to view these paywalled articles.

 

Can people recover from me/cfs like that or is it more likely she was misdiagnosed? Seems the diagnosis is a guessing game.

I can't imagine doing a marathon ever.

 

That’s presumably the woman I mentioned here:

 

Some do recover, and if they do, there is no reason to think that they shouldn’t be able to work out normally. Edit: after they have recovered.

 

https://www.thecanary.co/editorial/2025/05/07/me-cfs-me-awareness-day-2025/

 

https://www.facebook.com/1000643212...TpnyG1AKp1PKsuQVLfhSn23RnVuKRvVZGXZl/?app=fbl

https://cureme.lshtm.ac.uk/index.php/free-blood-samples-for-me-cfs-researchers/

 

I hope it leads to some good research!

 

Source: Northern Ireland Assembly
Date: May 12, 2025
URL:
https://www.theyworkforyou.com/ni/?...chronic+fatigue)+2025-04-30..2025-05-14#g3.27


[Members' Statements]

ME Awareness Week
-----------------

Robbie Butler

I rise to mark the beginning of ME Awareness Week and highlight the
ongoing, often invisible, suffering of those living with myalgic
encephalomyelitis. That complex and debilitating neurological condition
affects thousands across Northern Ireland but remains chronically
under-recognised and, in some cases, underserved in our health system.
ME can leave individuals housebound or bedroom-bound for years. It
causes profound fatigue, pain, cognitive dysfunction and
hypersensitivity to light and sound. Sadly, many patients still face
disbelief, stigma and a lack of appropriate care. Despite its severity,
there are no specialist services for ME patients in Northern Ireland.

There will be an event tomorrow in room 115 that Members are more than
welcome to drop into. For over 14 years, Hope 4 ME & Fibro NI has worked
to fill the gap. Through its advocacy, education and efforts, it has
kept ME on the public health agenda. I have been proud to support and
work alongside the group over the years, recognising the essential
advocacy that it provides for a community that is too often overlooked.
It has hosted 17 international medical conferences, contributed to
biomedical research and collaborated with Queen's University and Ulster
University to educate the next generation of healthcare professionals.
That work is driven by dedicated volunteers but is ably led by the
group's founder, Mrs Joan McParland MBE. Joan's personal resilience and
leadership have made a lasting impact, ensuring that ME patients are not
forgotten.

As we begin this important week of awareness, I pay tribute to all who
continue to shine a light on this devastating illness. I also encourage
Members to spend some time in room 115 tomorrow with us.

 

Hope so. Interesting in the context of age of samples and costs of keeping them which was brought up recently IIRC. Hopefully it’s just the former and they want people to use them while useful rather than issues over the latter