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

Trish said:
Very. I think it's window dressing for just happening to mention that the GP being quoted throughout the article is the founder of a London based wellness clinic that looks from its glossy website like it's aimed at fleecing the rich and gullible.
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Ah now it makes sense. He wrote it then.
 
17 March 2025 https://www.bbc.co.uk/news/articles/c62kdwll0xlo

Huge fall in NHS Long Covid clinics, study finds

New research has revealed the number of NHS clinics for people living with Long Covid has more than halved, from a peak of 120 services in 2022 to 46 today.

Services for children and young people are also affected with 13 specialists hubs reduced to eight.

The BBC also discovered the NHS in England no longer monitored the status of Long Covid clinics and stopped doing so nearly a year ago.

Spokespeople for NHS England and the Department of Health confirmed they were no longer tracking how many Long Covid clinics were still operating.

[...]

In response to an FoI, NHS England confirmed, as of April 2024, 109 services were open, including 99 for adults with the other 10 for children and young people

But a spokesperson said they stopped checking on the closure of clinics 11 months ago, when responsibility was given to regional NHS groups.

NHS England also declined to give any details about how public money was spent on Long Covid services.

The government told Parliament in 2024: "NHS England has invested £314m to expand Long Covid treatment in the NHS and rehabilitation services."

But when asked by BBC News to provide a spending breakdown, the NHS England spokesperson said that while it was spent "directly on Long Covid services", they did not hold any further information.

In response to a separate FoI request, the Department of Health spokesperson also said they held no information on where clinics have closed or how the money had been spent.
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Dolphin said:
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
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“At that point she went to hospital, where they pushed her by baby-steps, one word at a time, one more minute of light each day, until she progressed into a wheelchair, and then on to her feet.”
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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

Robin, how can GPs support someone with this multisystem condition when it is severe?

Clare, I'll maybe start with the definition of what severe ME is taken from the NICE guidelines in 2021. And it says that people with severe ME are unable to do any activity for themselves or carry out minimal daily tasks such as face washing or teeth cleaning.
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which is then potentially contradicted by this statement
So just be mindful of that 20% battery and think how much you taking a standard approach to this person, how detrimental that could be to their battery. So be reactive and dynamic to that person's circumstances. Assisting with symptom management, depending what that may be along the way. Assist with maintaining independence. If you've got a physio or an OT that's sympathetic or understanding to people with energy-limiting illness, they can potentially allow them assistance to have some degree of autonomy in the home.
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these are people that will not have the ability to prepare food for themselves
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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.
 
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Yann04 said:
Oh no, that’s GET. And later on in the article it attributes the improvement mostly to “willpower”.
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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
 
anniekim said:
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
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About a student who is bedbound with ME/CFS, POTS and gastroparesis.

This is from his fundraising page, asking for £10,000:

Oliver has now been offered the opportunity to undergo further investigations and if successful- he could receive a course of treatment - currently only available privately.
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It gives no indication of what the treatment is. He's been seeing private doctors in the UK. The only one I can think of would be based on the microclots theories, blood thinners and HELP apheresis. We shouldn't discuss an individual's diagnosis or treatment, but it concerns me to see appeals for funds for an unnamed treatment.
 
Nightsong said:
"Sister of bedbound ME sufferer urges more funding" (BBC):

https://www.bbc.com/news/articles/cd9lll0xk1xo
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Dr Mae Mansoubi, from the university, said: "Many people are suffering for a long period of time with ME before they are diagnosed.

"For about 13% of the cases, people are waiting 10 years before they are diagnosed."

Her team has created a new tool called digiTherapix which can track and record a patient's movement in real time at home.

The software can be used on any device with a camera and means healthcare professionals can remotely analyse a patient's movement and gait, their manner of walking, and make an earlier diagnosis.

Dr Mansoubi said: "People with ME are very vulnerable.

"It's very important to have a system in place to enable them to connect with a therapist in real-time from their home to seek help."
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I don't recall hearing about this before.
 
MrMagoo said:
A new estimate of 404,000 pwME. I don’t love the extrapolation to come up with that figure, but it’s better than anything else we have.
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It's interesting. Certainly feels a more feasible number (and feasibility matters on these things)

Cornwall has been a pretty good clinic for diagnoses (so not overdiagnosing as much as under) over a consistent number of years? And isn't one of the fatigue or PPS type clinics where PEM isn't checked for etc (that would be another intriguing one to take a guess at which of those have what, but I guess then we have a situation where you might have the right 'number' but it isn't the right people under those numbers, and of course they might well all have PEM and its just the clinic that doesn't ask because it doesn't want to know etc?)

I'm guessing maybe with that comes a bit better situation regarding GPs due to having referral options that actually do something and provide them with guidance they can go by etc?

I guess the difficulty always comes with the guessing at the demographics who are 'missed' but it might be that it sticks out like a sore thumb when you see the patterns on a bigger scale and they are eg looking at large GP surgeries as they have described.
 
I don’t like to compare and compete with other illnesses….but the figures on people with MS are just dwarfed.

Also I know a lot of people with MS, at least 4. Whereas I only know of one “friend of a friend” with ME (and all you guys of course) weird.
 
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