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

It's very well written and expressed.

I've sadly had to drastically reduce the number of plants in my home, as I just can't look after them.

But there are plenty outside. Although I have to keep the ones in my garden under a bit of control too!

I would pay someone to do it, but have limited ability to tell people what I want kept, etc., and much prefer native plants generally.

 

This video may be UK only. I can’t watch the video but have seen people praise it.
https://www.itv.com/walesprogrammes...week-clinical-trials-life-in-the-waiting-room

Wales This Week: Clinical Trials: Life In The Waiting Room
Tuesday 5 March at 8:30pm

Every new medicine is created as a direct result of a clinical trial.

But with the number of trials happening in Wales in decline, some patients say they're being left behind as a result.

Andrea Byrne meets the patients calling for more clinical trials to take place, with the hope of finding a better treatment, or even a cure for their conditions.

Adam a.k.a. Broken Battery has now uploaded extracts and the full video so people in other countries can access it:

 

Researchers develop online tool to encourage people to seek support for long Covid
https://www.pulsetoday.co.uk/news/c...ourage-people-to-seek-support-for-long-covid/
(Pulse is a magazine for GPs, there are sometimes comments but they don't appear to be enabled)

An online tool to support people living with long Covid aims to encourage people to seek help from healthcare professionals if they are not already receiving care.

Based on UK research studies into the condition and its impact, particularly in minority ethnic groups, the tool includes a symptom checker and advice on seeking support.

It may also be useful for those who are already accessing treatment or care for long Covid as well as healthcare professionals looking to learn more about the difficulties people may face when trying to get support, said the researchers at the University of Southampton who developed it.
...
‘Anyone suffering from other post-viral illnesses could find this tool useful as well. I am really keen for the tool to be disseminated in communities to help achieve more equality in access to care and support.’

A study that was done at Keele University looking at the effect of long Covid on ethnic minority populations was also used to inform the tool around on issues of self-doubt, stigma and impact on mental health.

Professor Carolyn Chew-Graham, a GP and professor of general practice research at Keele University, said: ‘We hope this tool is valuable for people with symptoms following an acute Covid-19 infection, people living with long Covid as well as clinicians in primary and secondary care who play a key role in supporting people living with the disabling symptoms.

She told Pulse that new tool would be important for primary care teams to signpost patients to given the Your Covid Recovery information was being retired from the NHS website and it was unclear whether the resources would remain accessible.

Supporting Long Covid Care is available at https://long-covid-care.org.uk​

 

The NHS is hosting a Long Covid conference, and it's the usual failed claptrap pseudoscience and 'mind-body' woo, with a few presentations actually based in reality.

Seems like one of those services is diagnosing half with FND, vs 5% with ME.

Twitter thread with a few more details:

Edit: The future is the past, everything new is old, they are not going to do anything to help anyone, they only want to do what they feel like doing. Either they don't know or don't care that this is widely derided as worthless by the patients, and either reason is just as terrible.

 

That's a lot of public money being spent on things with no evidence base.

 

https://twitter.com/user/status/1773309215517360636


Doctors need to get better at listening to our patients

 

Farmer says ME 'stole his childhood' on Isle of Man a year after specialised service launches

• 
  GRANADA
• 
  ISLE OF MAN
• 
  M.E.
• 
  MYALGIC ENCEPHALOMYELITIS
• 
  Wednesday 3 April 2024 at 12:11pm

https://www.itv.com/news/granada/20...his-childhood-while-living-in-the-isle-of-man

Includes a 93-second clip that was on Granada TV news

 

Or based on how to give presentations. Lecture notes, a page of 9 bullet points, beamed up to the audience? Sorry, but I spent 9 years teaching and examining presentation skills, and that's a fail. Can't these people be bothered to learn how to do anything properly?

 

Interesting debunking of blatant misrepresentation of Long Covid data from the UK national survey. None of this can be argued to be accidental, it's very deliberate manipulation of perception. It clearly aims to misrepresent the lie that most people who would go on to develop LC already have. We keep hearing how LC incidence is going down, despite data not backing it up. Well, when data doesn't back up a feeling, you can just misrepresent it with graphs.

Here's how they presented the data:

Using different time intervals:

Here's what it would look like normalized over identical time spans:

This is what using a 6-month average looks like, probably a better indicator to remove much of the short-term cases:

Fairly consistent across time. A masterclass in propaganda, how to lie using statistics. Technically, they are presenting the data as it is, but they are giving a blatantly false impression of it. This is more in line with recent population survey data from the US, and less recent data from Canada.

Incidence of LC is not going down. Public health authorities and influential MDs are saying so anyway, because they have a vested interest in the lie. This is going to destroy trust in public health and medicine. And if we hit even a middling case of H5N1 pandemic, years of "it's just the flu" are going to make everything worse.

So given this, how trustful should people be of medical data? When there is a clear all-out-in-the-open Big Lie happening about a major current event? In combination with giving alternative medicine pseudoscience prominence at the policy level, all the way down to the clinical interface, in part in response to having committed to a Big Lie?

So again, the crisis in medical academia is not about replicability, BS is easy to replicate, it's about validity, and the lie begins at the recording phase. And we're still going to see much puzzlement over the next few years from MDs who can't for the life of them understand why people don't trust medical professionals. Good grief.

The thread:

 

Merged: UK BBC report: Lack of access to medical care for disabled people


There are pieces on other conditions in the article, but this is the ME section:

'I was failed completely'

Michelle Penny has never had a smear test due to lack of access and, like Ms Watkins, she feels failed by the healthcare system.

"I just hope and pray that nothing is going wrong, I'm crossing my fingers and hoping for the best," said the 39-year-old.

She has been left almost bedbound by Myalgic encephalomyelitis and struggles to leave home to attend medical appointments.

"Everyone needs healthcare of some type, but if you can't get to them then you're failed completely," she said.

Ms Penny has not seen a GP in around six years, and has routine asthma appointments over the phone - but says it is not satisfactory.

"You could tell them anything they'd have to believe you because they can't see you," she added.

She has backed calls for at-home tests to detect for HPV, which are currently undergoing a trial in England.

https://www.bbc.co.uk/news/uk-wales-68891090

 

Lack of access really undersells the problem. Living in a very remote place where no specialists practice is lack of access. This is systemic denial of basic medical care. On purpose. Aware of the consequences. Defiant over a huge number of reports and studies showing the devastating consequences again and again.

Meanwhile in discussions over Long Covid, on medical forums they're getting seriously obsessed over social media. See, a huge number of people are reporting chronic health problems on social media, so clearly social media is the culprit. And they're mad that a huge number of young people are being diagnosed with chronic illnesses they don't believe in because people get their information from social media. Because there's no other option. It's especially the place where advocacy begins. And ends, sadly.

And just as we're seeing crackdowns on disability support in response, I fear we might see a deranged obsession over social media contagion. Because everything else is to blame. Anything but the people responsible.

 

How Long Covid risks going the same way as M.E.

https://www.telegraph.co.uk/health-...ow-long-covid-risks-going-the-same-way-as-me/

The term long Covid is familiar to all of us, yet the illness itself remains something of a medical mystery. “Long Covid is going the same way as ME [myalgic encephalomyelitis],” says Nigel Speight, a consultant paediatrician. “For a large number of years, GPs abdicated their responsibility for it because it wasn’t an ‘ology’ and the psychiatrists invaded the empty territory. Once they made it seem controversial and ‘no one knows if it’s real’, doctors sat on the fence and pretended it didn’t exist.”

 

She has M.E. though it’s not mentioned by name in this particular clip.

 

Here is the page for Woman's Hour for this epiosode:

https://www.bbc.co.uk/sounds/play/m001yys4

It says "The writer and content creator Pippa Stacey's perceptions of ageing have changed because of her experience of a chronic illness. Pippa was diagnosed with ME, also known as Chronic Fatigue Syndrome, while she was at university. She joins Anita to reflect on the impact of the physical changes she has experienced, the pressures young women are under and why she wants to listen to older, and wiser, women."

The particular piece is at 45.18 and ends at 48.50, although she does speak later, not specifically about illness.

 

Not sure where to post this draft.

This year people with ME demand A Statutory Public Inquiry with full legal powers to investigate ...

Edited: I meant to post the Twitter link rather the attachment twice.

 

There's a misprint near the beginning: Carol Monaghan, not Managhan.

 

Thanks. Saw someone on Twitter point that out to her.