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

Hutan said:
gosh
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The post pandemic excess mortality rate estimates by Swiss Re until 2033 are also quite interesting:
Chandelier

Thread 'Analysis: The future of excess mortality after COVID-19 – Swiss Re'


Swiss Re, the world’s largest reinsurer, is cautioning insurance companies that it continues to observe a persistent trend of excess deaths following COVID-19.

The PDF report can be downloaded from the website via direct link once a name and a properly formatted email address (e.g. a@b.com) has been provided.

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AI Summary:
The future of excess mortality after COVID-19​
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Introduction​
Four...​
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RCPCH Grand Round: Long Covid in Children and Young People - RCPCH Learning

This webinar intends to equip paediatric clinicians of all stages, GPs, and allied health professionals with up-to-date, evidence-based, and clinically actionable knowledge for the assessment, diagnosis, and management of Long Covid in children and young people.
learning.rcpch.ac.uk

A long Covid webinar was held at the Royal College of Paediatrics and Child Health back in February.

RCPCH Grand Round: Long Covid in Children and Young People​

This webinar intends to equip paediatric clinicians of all stages, GPs, and allied health professionals with up-to-date, evidence-based, and clinically actionable knowledge for the assessment, diagnosis, and management of Long Covid in children and young people.
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Speakers​

  • Dr Rae Duncan
  • Dr Emma Weisblatt
  • Dr Terry Segal
  • Ms Kirsty Stanley
  • Ms Jo Bond-Kendall
  • Dr Elmudathir Abdelrahran
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Presentation slides​

Dr Emma Weisblatt: How to assess neurocovid in clinic: and what to make of it all

Dr Emma Weisblatt: What is long covid in the CNS?

Dr Terry Segal and Ms Jo Bond-Kendall: Long COVID/Post COVID syndrome in children and young people \ Assessment and management for paediatricians

Ms Kirsty Stanley: Long Covid Kids – Learning from Lived Experience: Working in Partnership with Children and Families A

Dr Elmudathir Abdelrahman: The Covid-Kids Study Overview
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Cardiologist Rae Duncan mentioned the webinar in passing on Twitter:
Yes. A few of us have just delivered this year the first Royal College endorsed teaching and training webinar for doctors about long covid in children and young people.
We are now writing a textbook for Physicians about long Covid.
We are trying to get long covid & other PAIS recognised in mainstream medicine.
Doctors have never been taught about this.
There are no medical guidelines.
There are est 400M suffering from long COVID globally. And relatively few post acute infection specialists and we know many patients are struggling to access effective medical care & many doctors want to help but don’t know where to start because none of us have training guidelines.
None of us were taught about ME/CFS, PAIS, long COVID in med school (at least in UK), we are trying to change this.
The more doctors that understand LC or other different PAIS, the easier it will be for patients to access care from a doctor that understands their condition.
We need to work closely with our biomedical scientists and researchers too.

Ultimately we are creating this Society [ISLC–PAIS, S4ME thread] to try & help improve things
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More specifics from Dr. Duncan about the upcoming book:
Given I am writing the cardiac chapter I assure you I will be doing my best to offer thorough evidenced based and individualised patient appropriate assessments.
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Emma Weisblatt, a psychiatrist who was also part of the webinar, will write a chapter about neuropsychatry:
Emma Weisblatt
And I’m writing the neuropsychiatry chapter and can promise I will be doing the same for cognitive and psychiatric symptoms. Happy to answer any questions publicly or by DM.
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From the Wames link

Each organisation presented one of four proposals aimed at addressing the serious and ongoing gaps in care for people living with ME and Long Covid in Wales.

1. Bring together a National Expert Working Group of health care professionals and people with lived experience to co-produce an All-Wales Strategy and Delivery Plan for ME and Long Covid to ensure equity of service and compliance with NICE guidance across all ages and all severity levels. [WAMES]

2. Appoint an All-Wales Clinical Lead / Medical Consultant for ME and Long Covid to coordinate care across health boards, reduce regional variation, support complex cases, guide training, lead and direct the development of treatment for ME and Long Covid, and keep Wales in step with emerging research evidence. [SMEDC]

3. Develop a Welsh Government-led ME/CFS and Long Covid Research Strategy by 2027 to accelerate research through Wales’ Life Sciences sector. The strategy would bring together expertise from across the Welsh research and health communities, set clear national priorities, and support the translation of emerging findings from DecodeME, LOCOME and Sequence ME & Long Covid into effective diagnostics and treatments in collaboration with leading research groups in the UK and internationally. [AfME]

4. Consider long-term sequelae in any future pandemic planning or preventive strategies starting with an urgent review of Infection Prevention Control (IPC) guidance in healthcare. [Long COVID Support]
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Those seem like pretty good things to ask for. What do our Welsh members think about this?
 
From r/cfs:

Journalist looking into private doctors/influencers scamming MCAS/ME/Long Covid patients​

Hi everyone!
My name’s Isobel and I’m a freelance journalist.
My younger sister suffers severely from MCAS and ME, which is how I began looking into this story.
I’m interested in the private doctors who claim to provide treatment for MCAS, ME and Long Covid, and have since scammed people out of money, or left them without access to the medication they prescribed.
I’m also interested in social media figures with limited/no qualifications who claim to offer recovery plans or treatments.
It seems there are a lot of grifters who have sprung up due to a lack of assistance from the NHS, as well as incredibly long waiting lists. If you have any experience of this, and are based in the UK, please message me on here or send an email to [isobel.knight.4@gmail.com]
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This could be her website:
 
petitions.senedd.wales

Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care

Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales. In particular, major concerns persist regarding access for those with the severe form of the condition, leaving some families facing life-impacting decisions, without medical guidance. Sufferers...
petitions.senedd.wales petitions.senedd.wales

Sarah Boothby on Bluesky says:
Please sign and share.
You do not have to be resident in Wales to show your support.
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Petition text:

Petition​

Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales.
In particular, major concerns persist regarding access for those with the severe form of the condition, leaving some families facing life-impacting decisions, without medical guidance.

Sufferers are confined to dark rooms, require 24/7 care, some unable to speak, feed themselves, tolerate light or sound, or even sit up.

Proposed actions will ensure people with Severe ME can safely access evidence-informed medical care and improve their chances of recovery.

We urge the government to implement both immediate and long-term support for those in desperate need.

Actions co-produced by: Severe ME Difrifol Cymru (SMEDC), Welsh Association of ME and CFS Support (WAMES), Action for ME (AfME), Long Covid Support (LC Support).

1. Create a National Expert Group of health care professionals and people with lived experience to coproduce an All-Wales Strategy and Delivery Plan for ME and Long Covid, ensuring equity of service and compliance with NICE guidance (NG206 ME/CFS), across all ages and all severity levels.

2. Appoint an All-Wales Clinical Lead(s) / Medical Consultant(s) for ME and Long Covid to coordinate care across health boards, reduce regional variation, support complex cases, guide training and treatment, keeping Wales in step with emerging research.

3. Develop an ME/CFS and Long COVID Research Strategy to accelerate research in Wales through the Life Sciences Sector / Life Sciences Hub by 2027.

4. Consider long-term sequelae in future pandemic planning/ preventive strategies, reviewing Infection Prevention Control (IPC) guidance.
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Beautiful reel on Instagram for severe ME day.

No account required:

August 8th is Severe ME Awareness Day in recognition and remembrance of so many enduring the debilitating and relentless reality of living with this condition.

Lizzy, who left a message for Trooper’s Hill in Bristol, has written and recorded a piece for today.
“It was somewhere close…almost within reach, if it wasn't for Severe ME.”
Thank you for your words.

This project holds many of their messages - messages for the places they love but are now absent from.
We remain determined to amplify their unheard voices.

Video description:
A video of various clips: sun through tree leaves, clouds moving over a blue sky, grass swaying in the wind with views of a city behind.
Lizzy’s words are subtitled over these images in white and black to contrast images.
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