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

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In the Times today - "I was picked for Team GB. Then long Covid dashed my Olympic dream", about Oonagh Cousins:

https://www.thetimes.com/uk/healthcare/article/link-long-covid-me-dzdxtp206

https://archive.is/20240816080129/h...althcare/article/link-long-covid-me-dzdxtp206
Cousins has backed a campaign called #ThereForME which is demanding an overhaul in NHS care for patients with long Covid and ME. An open letter sent last week to Wes Streeting, the health secretary, was signed by 2,600 patients and carers and calls for the government to commit £100 million a year to medical research for the illness.
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ME and long Covid share striking similarities in terms of symptoms and being triggered by viral infections, but there is no known cure for either. Research suggests up to half of long Covid patients meet the criteria to be diagnosed with ME.
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“We must accelerate research into ME. Had there been investment at an earlier stage, we would have had greater scientific knowledge and perhaps even treatments available which could have prevented many more people suffering with ME-like symptoms following Covid-19 infection. Inaction comes at a significant cost. This remains a major public health issue that is need of an urgent scientific solution. If the government is truly committed to growing the economy and helping people to stay in work, properly funded research into diseases like ME must be prioritised.”
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The Guardian: "Fifth of patients at two north of England surgeries have long Covid, study finds":
https://www.theguardian.com/society...orth-england-surgeries-long-covid-study-finds

The report referenced appears to be this one, entitled Navigating the Long Haul: Understanding Long Covid in Northern England, published by Health Equity North and which is part of Newcastle University's "COVID Recovery Analytics" project:
https://www.manchester.ac.uk/about/news/regional-inequalities-in-long-covid-rates-revealed/

PDF available here:
https://www.healthequitynorth.co.uk/app/uploads/LONG-COVID-REPORT-2024-FINAL.pdf
 
https://www.bbc.co.uk/news/articles/cy0rwzd0r1do

By Lili Sheppard
BBC News, Somerset

  • Published
    7 hours ago
An ex-nurse is attempting to set a new world record by travelling from John O’Groats to Land's End in 45 days using a standard wheelchair.

Army veteran Lexi Chambers has fibromyalgia and complex regional pain syndrome (CRPS) - with the latter resulting in her leg being amputated three years ago.

She has four world records to her name and hopes to add another in her upcoming fundraiser called End 2 End The Rugby Relay.

"My goal is to inspire by demonstrating that despite adversity, achieving dreams is possible," said Ms Chambers.
 
As I understand it The Chronic Collaboration was basically Steve Topple and his partner.

From MEpedia:
https://me-pedia.org/wiki/The_Chronic_Collaboration
The Chronic Collaboration was founded in August 2021 to advocate for improved treatment of chronically ill patients including people with ME/CFS, and against the use of psychologization.[1][2] It was created in response to "the recent refusal of NICE to publish the much awaited ME/CFS guideline" and to protest about this, as well as "the years of medical neglect & mistreatment" patients have experienced.

Edit to add:
Not to be confused with Chronic Illness Inclusion, which I notice has a very similar logo.
https://www.s4me.info/threads/uk-news-from-chronic-illness-inclusion.24752/
 
Transcript of the spoken message on the tweet:
Hi everyone, we have an announcement about the Chronic Collaboration.

We are no longer continuing with the Chronic Collaboration or the social media accounts. This is due to both mine and Steve's health and the fact that we have to put this first. We are instead in the process of making a documentary about ME, its connection to connective tissue and the co-morbidities that occur within those conditions.

With the original support of Crowdfunder, we have had the opportunity to speak to many doctors and specialists over the last decade like Dr Weir and Dr Myhill and we feel it is important to document and share this information.

We have only become successful in raising awareness of chronic illnesses because of the support we have received from every single one of our supporters and allies. So thank you and keep fighting back.
Solidarity
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Much respect for the effort the people involved in the Chronic Collaboration have put in over the years. However, I do hope that they will think carefully about their documentary. Just because it is a doctor who has said something, that doesn't make it correct. That is of course true for the BPS brigade, but it's also true for others who are offering unevidenced biologically-based theories about ME/CFS as facts. Both sides can harm people with ME/CFS, including by damaging the credibility of people with ME/CFS. As journalists, I hope that the Chronic Collaboration will carefully consider views contrary to the views of people such as Dr Weir and Dr Myhill.
 
‘I grieve for the person I was before' - Covid inquiry to begin new phase
Jim Reed, Nat Wright
9 September 2024, 01:10 BST
Updated 6 hours ago
https://www.bbc.com/news/articles/crrlv0enpeno
The public inquiry into the pandemic will start 10 weeks of hearings on Monday looking at the impact on patients, healthcare workers and the wider NHS.

Covid patients have been admitted to hospital more than a million times in the UK since the virus emerged in 2020, while countless others have had care for other conditions disrupted.

The third stage of the inquiry, external will also examine the impact on NHS staff, the use of masks and PPE in hospitals, the policy of shielding the most vulnerable and the treatment of long Covid.

And for the first time, the stories of more than 30,000 healthcare staff, patients and relatives will form part of the material entered into evidence.
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