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.
 
Merged thread

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

A woman who was unable to walk while struggling with chronic fatigue syndrome has said running the Manchester Marathon later will be a "victory lap" to celebrate how far she has come.

Kelsey Sheridan, 28, was diagnosed with the condition, also known as myalgic encephalomyelitis (ME), in 2016.

She said while there was "no right way to manage" ME, she wanted to convey hope to others who were suffering.

The software engineer, from Middleton, Rochdale, described the 26.2 miles (42km) run on Sunday as a "kind of big 'in your face' to a lot of people".

"When I was undiagnosed there was no blood test that said anything was wrong with me," she said.

"A lot of people said, 'she's just lazy or skiving or not trying hard enough' or 'it's just pain, push through it' and I couldn't.

"No-one with chronic fatigue can. It doesn't work like that."

According to the NHS, myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), external is a long-term condition that can affect different parts of the body with the most common symptom known to be extreme tiredness.

Ms Sheridan struggled with exhaustion and her symptoms continued to worsen until she eventually required a wheelchair.

She said there was not a simple explanation for her recovery, but she had been helped by her assistance dog Hamble, who was provided by Canine Partners in 2019.

"I was constantly in survival-mode and felt like I'd never be able to recover," she said.

"With Hamble's help, I was able to slowly rebuild my strength and mobility."

'Significant milestone'
In early 2024, the 28-year-old went for her first run and she has not looked back.
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'Manchester Marathon will be victory lap after ME diagnosis' - BBC News
 
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"I've gotten better somehow. I have friends, a huge support group of fellow sufferers and they all want to know what I did," she said.

"All I can say is that I did what I could. I have B12 jabs and that kind of helped.

"There's no 'I tried this medication and it worked'. There's no answers and it's tough knowing there's still no answers out there for them."
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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.
 
Nightsong said:
"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
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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.
 
Canary said:
Monday 12 May is ME Awareness Day – for myalgic encephalomyelitis (ME/CFS). Historically, it has been marked with patients sharing stories online, and campaigning for improved treatment and research. However, this year one group is taking the fight for patients directly to Westminster, and the Canary is proudly supporting it. Us and the group want to show that in decades, nothing has changed for people with ME – thanks to government, the medical profession, and not least the media.
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Canary said:
On Monday 12 May, the Canary and Not Recovered UK will be at Westminster. We will be protesting outside both the Department of Health and Social Care (DHSC) and parliament, starting at 12pm at Old Palace Yard (opposite parliament) and lasting until around 2pm. It is over what Not Recovered UK has branded things being #StillTheSaME.
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https://www.thecanary.co/editorial/2025/05/07/me-cfs-me-awareness-day-2025/
 
bobbler said:
https://www.facebook.com/1000643212...TpnyG1AKp1PKsuQVLfhSn23RnVuKRvVZGXZl/?app=fbl

https://cureme.lshtm.ac.uk/index.php/free-blood-samples-for-me-cfs-researchers/
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To further drive clinical and biomedical research to improve the recognition, diagnosis and treatment of ME/CFS, the UKMEB are delighted to offer free blood samples and data for your research through a competitive selection process. We encourage applications from research groups nationally and internationally
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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.
 
Posting for a member:
State-of-the-art research laboratory that can help work towards new treatments opens at University Hospital - University Hospitals Coventry & Warwickshire
A facility that may be of interest to researchers

A state-of-the-art centre has been opened that could help clinicians advance personalised medicine by understanding complex biological systems.

The Multi-Omics Research Laboratory at University Hospitals Coventry and Warwickshire (UHCW) NHS Trust could also support the development of new diagnostic tests.

Based at University Hospital, Coventry, and hosted by the Research and Development Institute of Precision Diagnostics and Translational Medicine, a National Institute for Health and Care Research (NIHR) infrastructure grant of more than £1million helped to fund the facility.
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Recent expansion means that samples and data can now be provided from patients supported by UHCW NHS Trust, in addition to George Elliot NHS Trust and South Warwickshire University NHS Foundation Trust.

“This relationship means that researchers can not only access the technology within the facility, but also ethical approval and samples in one seamless process,” added Emma. “This is a unique offering and one that we hope will really support researchers.
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