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

Odd wasn’t it?

 

Ah now it makes sense. He wrote it then.

 

17 March 2025 https://www.bbc.co.uk/news/articles/c62kdwll0xlo

 

https://twitter.com/user/status/1902762773567689014

 

Esther Rantzen's daughter's horrific illness that left her imprisoned and unable to speak.

Go to,

https://www.mirror.co.uk/3am/celebrity-news/esther-rantzens-daughters-horrific-illness-34955324

 

Oh no, that’s GET. And later on in the article it attributes the improvement mostly to “willpower”.

 

Except the glaring error of this NICE definition that is too restrictive, based on a paper from the 1990syet copied and pasted into UK literature with variations but apparently zeal and devotion yet hs no bearing on reality in terms of being accurate afaic

which is then potentially contradicted by this statement

I would argue that in less restricted definitions light meal prep is possible and in my early stages of being housebound I could assist with / do light meal prep.My concern is that there is a definition in a guidelines that everyone is trying to fit their descriptions alongside but the actual description in Nice guidelines is wrong & not in line with or based on how many people, who define themselves having severe me , actually live. The 25% group page says people with svm can barely move yet also onky 25% of people who call themselves severe define themselves as bedbound so I would like to see genuine survey of the 75% severe not bedbound and what their daily capabilities are.

other than that theres a lot of common sense stuff said , especially geared to protecting the very severe. Many of us will have worked out the ways of trying to engage with doctors because there’s no alternative if you can’t speak, etc. Remembering the great fun of drs refusing to read stuff or provide email address etc in the past.

I think the gaping hole is in care for people who are alone and how on earth are people to survive illness in the very seveee form long term if they don’t have family support, medical or support services and rely on unstable social services or a care home.

There is too much just acceptance of the lack of severe services and range of nhs support in my opinion, especially considering how this is impacting lack of research interest. . I would like to have seen campaigns against the lack of severe ME care from the moment the 2007 clinics were set up openly excluding the severely affected. I’m glad that it was acknowledged that Graded exercise is bad and has caused harm but I would’ve liked more emphasis on the fact that poor medical care & GRADed exercise therapy et cetera are often the cause of people developing severe ME, unnecessarily, and if it is, this makes the illness state difficult to reverse via current management.

 

https://www.dailymail.co.uk/news/article-14584427/Healthy-student-bedbound-24h-care-mystery-disease.html

 

no mention of the LP? I was under the impression they said it was that that caused her recovery... oh but then it was the discovery it was really Coeliac all along.

Not saying that the Rantzen's are not being truthful, just that it seems like the press are cherry picking depending on what they want the story to be... and of course right now with the zeitgeist being that benefits claimants are just lazy/ malingering/snowflakes, the 'she did it with willpower' fits right in. Cue lots more stories about heroic recovery by people who pulled their socks up

 

Merged thread

[Radio segment] BBC Radio Cornwall covers ME/CFS and discusses the DHSC delivery Plan

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

 

"Sister of bedbound ME sufferer urges more funding" (BBC):

https://www.bbc.com/news/articles/cd9lll0xk1xo

 

Merged thread

Daily Mail article
My son went from being your usual 'party-loving' university student to needing 24/7 care in a matter of weeks after getting a mystery disease... we still don't have answers

https://www.dailymail.co.uk/news/ar...wimOVmMr8fbhn4MnDg_aem_VQVIfy7qIyaiHQC7UK2f_w

 

I don't recall hearing about this before.