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

Musician with ME gives back to hospital where she was treated

https://www.bbc.com/news/articles/cqx81qw9x1vo

A new variation on the theme of someone claiming something helped them get better from ME and they now go on to make money by “selling” it to others.

 

Yes, definitely a smart idea in an illness that commonly features sound intolerance. Brilliant!

I recently got back to being able to not just tolerate, but enjoy music. It's been a blessing, though I'm very far from being able to play anything. And I can only listen a few days per week, not for long. For years, I couldn't even process music. It sounded chaotic and jumbled, caused me pain. Then I was able to sort of listen to it, but couldn't separate the instruments from the whole. It was still very limited.

As my symptoms improved over time, especially sound intolerance, I was slowly able to listen to a bit, then a bit more over time. Still not a lot compared to normal. This 'envelope' doesn't grow because I listened to music, I was able to listen to music because it grew. They have it completely backwards. As is tradition.

 

To be fair I don't think the idea of doing this has come from the patient themselves - I'd guess it is a brainchild of either the organisation she works for (Songbirds UK) or the trust offering that service.

It comes across less as if the therapy cured her (I suspect even to laypersons, depsite the line about 'part of her recovery was designing a programme that included..') but that she is someone now doing that job who has been by the sounds of it 'received treatment' there at least at some point going by the talk about the environment, so relates to how it's nice for patients to have the soothing of the music including in ICU etc.

It is her manager who is mentioning how what this sort of thing offers (not specifically to ME patients but it sounds like inpatients) isn't 'just an add-on' but an important part of helping people recover. But I guess in the sense of that fluffy 'making the stay less 'stressful' gets people well faster' that's the sort of thing people have to say in order to justify their reason for being.

edit: just as so would having a nicer environment for lots of patients so it wasn’t too noisy to sleep etc. except I sometimes wonder if they get confused there that whilst they might get well faster the worry is they would ‘get out if there faster’ (because they were so desperate to get home to get a decent nights sleep and a clean bathroom etc) - these things always have to pitched to the ‘moving them along’ values too.

And I think it's more a story of 'someone who was once a patient now becomes staff' , and about what it can do regarding the inpatient experience across all conditions/departments than saying anything about ME/CFS specifically. And it is a good news story if she's been ill through her childhood and is now in the position where she can do this and it works for her needs, and she gets satisfaction from it etc. But I agree it is PR.

What this does flag is there is still.... and I really can't believe the disrespect that we are still here because noone cares and decides for us that 'it's OK' to keep getting it wrong that we've got this in the first para:

It's like taking all the ways of getting it wrong and then changing it to make it even worse

BUt then I cringed and still do for years and felt like I'd been made to be tarred and feathered by now being labelled as having to say the word 'syndrome' at the end of chronic fatigue - funny how even if people want to tell me in other contexts and for other illnesses that words means something different (although it's also used for 'Havana Syndrome' in the exact same tone), so I can see where someone might say ME then prefer chronic fatigue 'condition' eg can almost imagine a conversation in my head that just underlines what a state of play we are in regarding the name issue, how to describe it to someone who isn't going to listen to more than a few words etc.

 

(Northern Ireland)
"Local Charity Explores Parallels Between M.E. And Long Covid With Leading Experts At Newry Event"

https://lovebelfast.co.uk/local-cha...ng-covid-with-leading-experts-at-newry-event/

Includes comments from Joan McParland, MBE & Linda Campbell

 

Ticks all the bbc it’s the start of the new year classics (that horrifying they probably think are ‘good values’)

 

Not quite sure where to put this, but here seems like a good spot, as it would seem to have implications for ME/CFS in the paediatric context in England.

I recently came across a paper in a NIHR journal, published this month - a review that "is part of a larger study that will inform the development of a new children’s hospital in England", focussing in particular on eating disorders and "functional symptom disorders". From the paper:

CFS is named in the paper as such a "functional" syndrome.

The hospital in question is not named but is very probably the proposed Cambridge Children's Hospital which is being designed around a model that "fully integrates physical and mental health".

Thought that this seemed like something that UK advocates should be aware of. If there are any opportunities to influence service development...

Link | PDF

Thread here:
Systematic review of integrated mental and physical health services for children and young people with eating and functional symptoms 2025 Massou+

 

hmm, good catch. I'll be honest I've been waiting for something along these lines because I frankly thought the tactical response to the news articles over the last few years would be something misguided and opportunistic.

And the definitions now put into these brackets - if now trying to change these to these new ones sounds suspiciously like the tricks played on pwme hell rolled into one. Even if we did know that some were trying to turn MUS into FND = conversion disorder.

I'm also curious about the choice to include the American Psychological Association in the search :
We searched MEDLINE, EMBASE and PsycInfo® (American Psychological Association, Washington, DC, USA) electronic bibliographic databases in July 2024


The results in the abstract is a bit random, although of course the suggestion of what to do next doesn't correlate to these as usual

I'm not sure how this is a resounding evidence to decide to start keeping MUS

and for kids - and I get so .... why kids ?? I can't help thinking it's that 'the most vulnerable' thing regarding 'targets'

The impact of all this awfulness will leave them without having been allowed to have their truth for their entire lives if they have this wrong. Which I suspect for most who end up under this they will have .. in my opinion

 

Hmm - I think it is worth close studying of the 'view award' section Centralisation of specialist health care services: a mixed-methods programme - NIHR Funding and Awards, which includes as one objective (the focus seems to talk about a big aim being to centralise care into a small number of spcialist services for certain things)

It seems there are a lot of related projects listed as well. the first of which mentions:

Rapid Service Evaluation Research Team: RSET - NIHR Funding and Awards

It feels like this ongoing plan is something some of us might want to be finding out more about how it is working and its plans.

 

Me too.

 

Stephen Morris (0000-0002-5828-3563) - ORCID [accessed 9 Jan 2025]

Deciding to catch them younger?: Malingering and illness deception conference, Woodstock 2001

 

The Intertwined History of Malingering and Brain Injury: An Argument for Structural Competency in Traumatic Brain Injury | Journal of Law, Medicine & Ethics | Cambridge Core 19 October 2021

 

Lancashire & South Cumbria NHS Foundation Trust
From 2022
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a chronic, debilitating neurological condition that affects 1 in every 250 people in the UK. This is Tilly's experience about the support she obtained from the service resulting in increased independence and quality of life.

https://www.youtube.com/watch?v=nJFbugw7zQw

102 seconds.
I dislike how it is titled recovery when we have little evidence that these treatments leave to recovery or even that recovery was achieved in this case (very little information is given about the "after")

 

Andrew Gwynne Health Secretary Sacked over offensive comments
https://news.sky.com/story/andrew-g...ts-posted-on-internal-whatsapp-group-13305272

 

So who now is responsible for delivering the ME/CFS Task and Finish Group's delivery plan for ME/CFS ?

 

I guess there will be a new health minister.

It’s so disappointing because Gwynne had experienced Long Covid there was hope he’d be a good ally.