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

In addition to "Managhan", there's also "PACE trail" and "medial scandal" (surely it's a lateral scandal as well!)

Also, I thought it was Queen Mary University, not Queen Mary's... and was it a judicial review? I seem to remember it was an ICO tribunal, but I might be wrong about that one.

 

I’ve passed that on. I don’t know anything more to know how significant or otherwise the idea is.

 

After some criticism on twitter BBC changed the headline of their recent article from

Chronic Fatigue Syndrome: Protestors Call for specialist ME services
​

to:

ME: Protestors Call for Better Support
​

Good news https://www.bbc.com/news/uk-northern-ireland-69000501

 

ME/CFS essay competition winners announced

https://www.actionforme.org.uk/news/me/cfs-essay-comp-winners-announced/

A few charities were involved.

 

I’m so baffled by the fact the BBC will prefer to run stories like this, instead of running stories about people who’ve been bedridden for four years.

https://www.bbc.com/news/articles/crgygy8zmzmo

'Stairs left me breathless but I scaled mountain'

 

People being bedbound for 2.5 years being spun up as feel-good stories, neglecting the huge number of people who do not have a happy ending, has the same feel as US news media reporting positive feel-good stories about children running lemonade stands or selling all their toys to help a parent pay for life-saving treatment because they don't have health insurance. It's so dystopian.

Oh, and she couldn't even do it, took 3 days and did the final stretch by car.

So it's not even a feel-good story, it's pure spin.

 

yes its not a very long way from there to the celebration of contestatns in The Hunger Games is it

 

It’s like how they celebrate and glorify the winner of the hunger games, while ignoring and not doing any funeral or anything for the 23 others who died.

 

Long Covid Teachers Join Forces to Sue Ministers - Schoolsweek

https://schoolsweek.co.uk/long-covid-teachers-join-forces-to-sue-ministers/

 

Oh god:

Hemel Long Covid Sufferer attempts World Record

A Hemel man is attempting to break a world indoor rowing record despite having suffered with Long Covid for nearly four years.

Nick Molloy is a former world record holder and current British record holder in 100m and the minute distance.

As Nick says ‘I can’t train professionally anymore as the Post Exertional Malaise means I typically have to spend portions of the next day in bed.

‘I used to train 6-7 days a week but now I’m limited to every other day.

Hemel Today: https://www.hemeltoday.co.uk/health/hemel-long-covid-sufferer-attempts-world-record-4641254

 

Residents to get help with long Covid symptoms - BBC

People who are struggling with symptoms of long Covid can get help from a council-funded exercise scheme.

The 12-week long Covid recovery programme is open to resident from North Northamptonshire with sessions held at Lodge Park Sports Centre in Corby.
​

https://www.bbc.com/news/articles/clmmg0xnm82o

 

How can you help me integrate my long covid care?
BMJ 2022; 376 doi: https://doi.org/10.1136/bmj.n3102 (Published 27 January 2022)
Cite this as: BMJ 2022;376:n3102


02 June 2024
Karen L Hargrave
Freelance researcher and policy analyst
UK
@karenlhargrave

Rapid Response:
Why I’d rather have a well-researched and well-informed doctor

Dear Editor,

I developed Long Covid in March 2020. Four years later I still haven’t fully recovered. These days I am more functional, but still limited in how much exertion I can manage before triggering a relapse. Two years ago, just as my condition started to improve, my husband developed Long Covid as well. He deteriorated rapidly, to the point that he is now reliant on full-time care. We have both been diagnosed with ME as a result of Long Covid.

There is much I can relate to in Carl Jreidini’s account. Like him, I have spent countless hours reading research papers and online support groups about Long Covid and ME to find solutions for our chronic, debilitating symptoms. But my question is this: why should patients like us, suffering from an energy-limiting condition, need to become our own physicians to access relevant and evidence-based care?

Continues at:
https://www.bmj.com/content/376/bmj.n3102/rr-0

 

It's the lies that bother me the most. That almost everything they say about us is either lies, or allusions to things that are also lies. If it were all true, I wouldn't mind any of it. But it's all false. And it reveals the lengths to which medical professionals can go in the promotion of lies, which has reached such large proportions that a significant % of health care practices can't be trusted, there is simply no real validation process for a lot that happens. It even reached the point where they'd rather embrace alternative medical pseudoscience than admit it was all false.

Even businesses caught in similar positions will generally do everything they can to avoid lying outright, because it can be used against them in a court of law later on. They will use duplicitous language, but they will not say things they know are false and can be verified. It's only when there is no such court, not even a formal proceeding where these things can be judged, that this happens. It only happens in politics, when politicians know that lying is better for them than to tell the truth. Where the only court is the court of public opinion. Which is literally not a court, it's just a saying.

Only politicians lie like this. And medical doctors. And frauds, shysters, scammers, grifters, and so on. But those last ones don't count, they're all illegal anyway.

If reality doesn't matter, if truth is second to personal interests and ideologies, what the hell is this even all about? No system can work with this much lying. Not effectively, it only diminishes it. And it really shows.

 

and if you're a parent researching the condition because your child is suffering with it, face having that used against you in an accusation of FII that could tear your family apart.

 

While other lines include the terms: "rheumatoid", "auto-immune", "MS", "hemiplegia" which the patient is presumed to be able to recognise, understand and respond to. Wow.