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

Just to make sure it's clear: the HSE guideline would apply only to Ireland, i.e. the Republic of Ireland.

A HSE guideline would not apply to the UK, and so would not apply to Northern Ireland, where the NICE guidelines would apply.

But in practice, Irish clinicians always have an eye on the NICE guidelines, and the NHS shares lots of with the HSE. It's entirely possible that the HSE guideline will refer heavily to the NICE guideline and take vast chunks of it wholesale.

Ultimately, a HSE guideline will be an alternative rather than a supplement. If the HSE and NICE guidelines differ on a point, the HSE guideline would win out in Ireland. But you wouldn't be considered entirely unreasonable for pointing to the NICE guideline since they are generally respected.

 

Totally reasonable assumption. Don't worry, it's confusing! They were talking about two different jurisdictions, and calling on both the Irish and UK governments to fund research, even though where he's from (Derry) and where he lives (England) are both in NHS-land.

In terms of healthcare, overall it's a clean break between UK: NHS and (Republic of) Ireland: HSE. But there are ways of accessing the other system that are probably particularly relevant for people from border counties like James Walton in the Sunday Times article. Though it sounds like things are in flux at the moment so some of this may be inaccurate. As far as I can tell, it is possible for some people living on one side of the border to access healthcare on the other side of the border. People living in the the south but working in the north have access to both NHS and HSE care. When they retire, they lose access to the NHS. And vice versa, I think. You can also access private healthcare in the north if you live in the south regardless of where or whether you work, through the Northern Ireland Planned Healthcare Scheme. I'm not sure about the reciprocal arrangement, previously available under the Cross Border Directive. If you're accessing the NHS, NICE guidelines will apply. If you're accessing the HSE, this future HSE guideline will apply. In practice, the guidelines may end up being essentially the same.

James Walton is from a border county, and you can see from the article that he's open to both the UK and Ireland. It mentions that he was planning to represent Ireland at future world champs. Athletes from Northern Ireland can choose to represent either "Great Britain and Northern Ireland" or (the Republic of) Ireland. It comes down to identity (do they feel British or Irish) but also practical concerns (what funding and opportunities will they get in each). For athletes who feel both British and Irish, it comes down to practical concerns, but they might also represent one for a few years and then switch.

This person explains it better than I can - this is an answer to a Quora question "Do people in Northern Ireland consider themselves Irish or British?" (James Walton's identity might be completely different to this person's, but it demonstrates the complication well):

When someone from Northern Ireland refers to "Ireland" while in the UK, they're not necessarily referring to the Republic, they might be referring to Northern Ireland, the whole island or the Republic. You kind of just figure it out from context. So yeah, confusing!

 

Canary story about someone campaigning for a harms reporting system for non-pharmaceutical interventions such as CBT & GET - "Government hit with formal complaint over discredited NHS treatments for ME/CFS":

https://www.thecanary.co/uk/analysis/2025/03/02/me-cfs-discredited-treatments/

 

News from the NHS England Ivory Tower!

https://www.youtube.com/watch?v=eqyUAtzS_6M

Sir Stephen Powis in place during NICE ME Review....
Observations from elsewhere,

'The NHS England - Sir Simon Powis has resigned.

Did not enjoy his letters when trying to fight for PoTS services for paeds and he was lower down then and very wilfully ignorant.

Now a Dr Penny Dash, who was just a Chair of North West London Integrated Care System and NHS North West London, will join NHS England as its new chair on 1 April 2025- I wonder what Wessely is thinking and so hope he had no part in her placement.

Though he will of course be saying that he did.
So who is she ..
a public health doctor in NW London, as a senior manager in the NHS and as an advisor/consultant to a wide range of organisations across the healthcare landscape (what????).
Penny was a partner with McKinsey & Company from 2009-2021. Well the dreadful management endless speake that says nothing may not be gone....'

 

It is being announced this morning that NHS England is being abolished

https://www.telegraph.co.uk/politic...est-news-keir-starmer-speech-benefits-labour/

edit: link substituted

“And I can’t in all honesty explain to the British people why they should spend their money on two layers of bureaucracy.

“That money could and should be spent on nurses, doctors, GP appointments. So today I can announce we’re going to cut bureaucracy across the state... I’m bringing management of the NHS back under democratic control by abolishing the arms-length body NHS England. That will put the NHS at the heart of government where it belongs.” Keir Starmer

 

It seems nobody else was either; perhaps a useful mechanism for control or exertion of influence? I was struck by the descriptions of it as "duplicative" of processes in DHSC. Just an extra layer of people with influence giving them a sphere to work with?

 

so, there we have it...!

 

https://worcsmegroup.weebly.com/blog/yawn-a-play-during-mecfs-awareness-month

YAWN a play during ME/CFS AWARENESS MONTH
11/3/2025




YAWN will debut at the Cheltenham Fringe Festival, at 5.00 pm, on Tuesday 27 May.
Hollie Christian-Brookes, an actor-singer, with puppetry and stage combat experience has written original play 'YAWN' about living with ME/Chronic Fatigue Syndrome.

Tickets are now available here
Cheltenham Playhouse - CFF25: Yawn~
Concessions £5 and full price £8 - (concession rate is based on self-identifying of a disability).
This event is part of our Cheltenham Fringe Festival 2025,
and will be taking place in our Auditorium.

Hollie tells us that YAWN is about her journey of becoming ill and getting diagnosed with ME/CFS and how difficult it has been at times. Hollie is very aware that her story may not be in line with everyone's experience of having ME, She is hoping to raise greater awareness and understanding of the condition through the work. This first performance will hopefully also start us on a further exciting journey of securing funding for touring and longform development,

A twenty-something woman with a high-flying career is suddenly struck down by the debilitating chronic illness, ME. Bed bound and thrust into a new world of strange symptoms, she quickly realises just how invisible her illness makes her. As she searches for answers within a broken healthcare system, she learns more about herself than she could ever have imagined, discovering that sometimes our biggest challenges can be our strongest superpowers.

Semi-autobiographical of the author's own experiences over the last two years, YAWN aims to raise awareness of what living with a hidden disability is really like, while delivering a powerful message of hope and (hopefully) some laughs along the way...

 

NickyProctor ⁦‪@NickyProctor⁩
Here are slides from the talk I gave to 30+ nurses & doctors of ⁦‪@YSTeachingNHS⁩.
None of this lovely group had received any training about #ME - this is not unusual.

Feel free to use & share:
https://docs.google.com/presentatio...vzKiVnB2ERsI/edit#slide=id.g2e3e6f8c91a_0_330

 

NHS England was specifically and solely created to ensure that the then government could not be blamed for anything - it would all be down to NHS England's incompetence. And presumably lots of nice sinecures were set up to make it worth being paid to be a fall guy.

 

Yet to see independent analysis regarding abolishing nhs England (which hasn't served pwME at all) but interesting that a main reason was the duplication of staff, efforts - 2 people doing the same thing in different sections and therefore waste of resources ... which has certain resonances