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

[Sly Saint]

Mods: I'm a bit confused. These regional threads come under "ME/CFS and Long Covid News". But they are not necessarily about ME/CFS or Long Covid, just general news.

 

[Trish]

Mods: I'm a bit confused. These regional threads come under "ME/CFS and Long Covid News". But they are not necessarily about ME/CFS or Long Covid, just general news.

Sometimes general health news, or minor media health items are posted that is only of interest or relevance to people in a particular region, so we move it to the regional thread.

 

[Chandelier]

‘We deserve to be heard’:Young woman takes Long Covid fight to Parliament

A young woman from Weymouth has spoken in Parliament about the realities of growing up with Long Covid, sharing her experience with MPs and health…

www.dorsetecho.co.uk

Weymouth woman tells MPs what it’s like growing up with Long Covid​

A young woman from Weymouth has spoken in Parliament about the realities of growing up with Long Covid, sharing her experience with MPs and health experts.

She said: “I wanted Parliament to understand what it has been like growing up with Long Covid, but I also wanted to represent the many children and young people who couldn't be there.


“We deserve to be heard. Just because tests don't always show what's wrong doesn't mean we aren't ill.


“When our health, education and everyday lives are clearly being affected, we need people to listen and support us. I've grown up with Long Covid, and no young person should have to wait that long to be recognised or receive the support they need.”

[Sammie McFarland, founder and CEO of Dorset-based charity Long Covid Kids] said: “Children and young people are too often overlooked in research, policy and service planning, with services frequently developed around adult evidence and need.

“The gaps in data matter because, without accurate information, it is difficult to understand the true impact on children’s lives, plan services or allocate resources effectively.


“One of the most important aspects of this session was that Kitty wasn’t simply represented, she was able to speak for herself while also representing the many young people who were too unwell to attend or whose voices are too rarely heard.”


The session also heard from consultant adolescent paediatrician Dr Terry Segal, who highlighted gaps in specialist services and ongoing inequalities in care for young people with Long Covid and other post-infectious conditions.

Long Covid Kids said it will publish a full briefing and presentation in the coming days to support families, professionals and policymakers, and to strengthen local and national advocacy.

 

[Chandelier]

Hidden in the new school allergy guidance is a major victory for clean air

Two years ago, members of the Clinically Vulnerable community began telling us something was wrong. People who had voted all their lives no longer felt able to vote in person. The introduction of voter ID had created a new barrier. For Clinically Vulnerable voters and others who continued to...

www.clinicallyvulnerable.org

Hidden in the new school allergy guidance is a major victory for clean air​

Clinically Vulnerable Families on the new allergy safety guidance, clean air in schools, and why this matters for our families.

For years, the official response in schools focused almost entirely on what happened after an asthma attack had begun. Keep a reliever inhaler available. Recognise the warning signs. Call 999 if symptoms worsen.

For the first time, statutory guidance explicitly recognises ventilation, air quality monitoring and HEPA air filtration as essential elements of asthma control, placing clean indoor air firmly within schools' health and safety responsibilities. After years in which air filtration was often dismissed as an optional pandemic measure, clean air is now recognised as part of protecting children with asthma and allergies.

The attendance fight
The good news doesn't end there.
Clean air was not the only issue Clinically Vulnerable Families raised with the Department for Education.
For years, schools have celebrated 100% attendance through certificates, prize draws and awards.
The intention may have been positive, but the effect has often been deeply unfair. A child with a health condition will have addition health related absences, such has recovering from a serious asthma attack and therefore cannot ever achieve perfect attendance.
Neither can a child whose medical condition requires regular treatment, or where common infections carry far greater risks.
Our evidence to the UK Covid-19 Inquiry found that children in Clinically Vulnerable families experienced substantially higher levels of unavoidable absence during the pandemic.
Yet many continued to watch classmates rewarded for attendance targets they could never hope to meet.
We argued consistently that attendance policies should recognise medical reality rather than penalise children for it.
The new guidance reflects that principle. It identifies excluding children from attendance rewards because of a medical condition or allergy as unacceptable practice and expects schools to ensure their policies do not disadvantage pupils because of their health. It is a relatively small section of the guidance, but for many of the families we support it corrects an injustice that has quietly affected children for years.

 

[Trish]

A post about the Timms interim report on PIP has been moved to:
UK: Disability benefits (UC, ESA and PIP) - news and updates 2026

 

[Chandelier]

Changes to Coventry and Warwickshire ME services concern charity

The charity says up to 6,000 people in the county could be affected by changes to ME services.

www.bbc.com

600-word article.

Charity concerns over changes to ME services​

The ME Association said George Eliot Hospital in Nuneaton had closed its service, while those with Long Covid served by University Hospitals Coventry and Warwickshire NHS Trust (UHCW), were being referred to other care schemes by their local GPs.
Dr Charles Shepherd, the charity's medical advisor, said many patients relying on the support services in Warwickshire were finding out via social media and that in some cases GPs had also been left in the dark.
In a statement, NHS Coventry and Warwickshire Integrated Care Board (ICB), which commissions services, said it had not changed funding packages, but acknowledged that specialist clinics had been stopped.
However, it would not be drawn on what services remained accessible to patients.

 

[Sly Saint]

Changes to Coventry and Warwickshire ME services concern charity

The charity says up to 6,000 people in the county could be affected by changes to ME services.

www.bbc.com

600-word article.

Charity concerns over changes to ME services​

I'm not sure it's such a loss

Thread 'UK: George Eliot Hospital NHS CFS clinic'

Apr 14, 2023

Who We Are

The CFS clinic consists of a multi-disciplinary team of consultants (led by Professor Vinod Patel) and includes registrars, junior doctors, physician associate and occupational therapist.

Aims/Focus

The service at GEH is focused on the following aims:

Offer a specific diagnosis of CFS and exclude other conditions that can mimic these

Management of treatable conditions which can exacerbate CFS

Offer support and advice on the patient’s concerns, including treatment of some
symptom
Promote and empower individuals to self-manage the condition

...

• Sly Saint
• Replies: 7
• Forum: UK clinics and doctors

• 

 

[Dolphin]

Invest in ME also re-shared this post. Perhaps the NIHR BioResource project is already known about?
—
Our Clinical Research Facility team have joined the NIHR BioResource project and are calling on volunteers to come forward to help advance medical knowledge and future patient care.

The National Institute for Health and Care Research (NIHR) Norfolk Clinical Research Facility team, based at the Quadram Institute, will be recruiting participants to the NIHR BioResource, a publicly funded national research resource with a network of 28 centres across England and a community of 350,000 volunteers who have agreed to take part in research.

The NIHR Bioresource links researchers with people willing to participate in research and provides approved researchers access to genetic, clinical and lifestyle information collected from its community of volunteer participants.

Individuals who join will be asked to provide samples such as blood or saliva for genetic analysis, as well as relevant health and lifestyle information to support research. Participants may also be contacted about taking part in future studies.

NNUH’s BioResource team includes research nurses, specialist nurses and research midwives, working alongside doctors and under the leadership of Dr Kate Read as the Principal Investigator. The team aim to recruit participants from a variety of settings, including outpatient departments, inpatient wards, specialist clinics, and community events, to maximise recruitment opportunities and support inclusive participation.

Approved researchers can use the NIHR BioResource to find and contact volunteers who have already agreed to be approached about research. This makes it quicker and easier for participants to be recruited into research studies, helping research to commence more efficiently. The BioResource gives approved researchers access to the genetic, health and lifestyle information that volunteers have chosen to share. Researchers must go through a formal application and approval process before they can use this information. This helps them carry out research that would otherwise be difficult, especially into genetics and rare diseases. The research aims to improve understanding of how diseases develop, identify new treatments and improve patient care. Your personal details will only be available to authorised members of the NIHR BioResource team and regulatory authorities who monitor that the study is being carried out correctly.

NNUH will be recruiting for two BioResource cohorts:

D-CYPHR (DNA, Children + Young People’s Health Resource) supports research into childhood health conditions by involving children and young people aged 0–15 years. The programme aims to improve our understanding of how genetics and environmental factors influence a wide range of childhood conditions, including diabetes, heart disease, mental health conditions and rare diseases.

Improving Black Health Outcomes (IBHO) BioResource focuses on improving understanding of health conditions that disproportionately affect Black African and Caribbean communities, including sickle cell disease. The programme aims to increase representation in genetic research to help develop fairer, more effective treatments and healthcare for Black communities.

By joining the BioResource, participants can contribute to health research aimed at improving our understanding of health and disease and supporting the development of new treatments and interventions.

If you would like to learn more about the NIHR BioResource or are interested in taking part, please contact the study team via email at NIHRbioresource@nnuh.nhs.uk or by visiting the BioResource website https://orlo.uk/zqZ1q

The Quadram Institute

 

[rvallee]

Five questions on Long Covid

Five questions on Long Covid | Royal Society

This article builds on the 2024 blog post ‘Is there hope for people with Long Covid?’

royalsociety.org

Here, we consider five broad questions –

• What is Long Covid?
• Is Long Covid the same as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?
• How is Long Covid caused?
• Why do some people develop Long Covid, while most recover – and why does Long Covid vary so much between people?
• Is there an effective treatment for Long Covid?

This article builds on the 2024 blog post ‘Is there hope for people with Long Covid?’

 

[Hutan]

Five questions on Long Covid

If anyone is worried about clicking on this Royal Society article, it is generally sympathetic

Fortunately, fewer people now wrongly dismiss Long Covid or ME/CFS as a psychological or psychosomatic condition. But it is equally important to recognize the devastating impact that Long Covid can have on mental health: it is not surprising how the symptoms such as chronic fatigue, pain and disability can lead to depression.

But it has weird parts or at least very speculative parts.

Here's the last part on treatments:

Is there an effective treatment for Long Covid?​

Long Covid, like Chronic Fatigue Syndrome, poses serious challenges in trying to find an effective treatment. But as the understanding of Long Covid improves, some leads to possible new forms of therapy are emerging.

The National Institute for Clinical Excellence (NICE) has concluded that the regimes of graded exercise that were previously tested don’t give a significant benefit in most people with Long Covid, and so these regimes are no longer recommended.

Many studies of dietary supplements have been carried out (footnotes 11-13) and, while not all studies show a significant benefit in Long Covid, some clinical trials have shown that supplementation with certain vitamins (vitamin D), amino acids (L-arginine or taurine) or a combination or ‘probiotic’ bacteria may be able to reduce some symptoms. The benefits are often small but measurable, but could be important in someone with a specific deficiency, for example of a vitamin.

Because the immune system plays a part in causing or contributing to Long Covid, therapies directed against specific parts of the system are being considered. One that shows some promise, albeit at an early stage of testing, is intranasal administration of an antibody that attacks T lymphocytes (footnote 14). And the recent discovery of the part played by autoantibodies against nervous system tissues (6) raises the question whether depleting the antibody-producing B lymphocytes or the antibodies themselves might help, although such treatments would carry risks of their own.

The author is Professor Charles Bangham FMedSci FRS, Emeritus Professor of Immunology, Imperial College London. And he wrote that earlier article, so he may well do another one at some point, perhaps he is the Royal Society's go-to guy on Long Covid. In which case, it could be good for a member here to have a chat to him sometime.

 

[Jonathan Edwards]

The author is Professor Charles Bangham FMedSci FRS, Emeritus Professor of Immunology, Imperial College London.

Charles is a member of my extended family. He is my late godfather's nephew and my sister-in-law's cousin. I worked for his father briefly as a student. I think Charles was Danny Altmann's predecessor at Imperial. He seems to have produced a sympathetic and broad-ranging review without any particular pet theory but I agree that there is speculative stuff. I note that he has taken the study of passive transfer of autoantibody to mice at face value - which I would not. But then Charles was never that directly involved in autoimmunity as far as I know.

He seems to have missed a few tricks on the genetics since HLA does not seem to be very relevant and some other things do. (The piece may have been written several months ago.)

The upbeat take on research translating to treatment is a bit naive, I think. But promoting the case for research cannot be bad.

 

[Adam pwme]

Article: Kirklees Council called to 'bridge gap' in 'debilitating' chronic condition care

Kirklees Council called to 'bridge gap' in 'debilitating' chronic condition care

Myalgic Encephalomyelitis (ME) is a complex, long-term neurological disease

www.examinerlive.co.uk

Full council discussion (~54 mins):
Kirklees Council’s Health and Adult Social Care Scrutiny Panel on concerns over local ME/CFS provision

 

[hotblack]

Yesterday there was an announcement by the PM on a new path to fixing social care

PM sets out new path to fix social care together: 29 July 2026

The Prime Minister has set out his commitment to end decades of political drift on social care and fix the system so that it gives people dignity, security and support when they need it most.

www.gov.uk

This will involve a public consultation as part of the already ongoing Casey commission, which is now due to report next summer rather than 2028

To ensure their voices are heard, Baroness Casey has today launched the Big Conversation on Care to ensure people all over the country can feed in their views. Open to everyone through a new online platform, it will ask people to share their thoughts on the values and principles they expect from a care system, as well as some of the tough questions around fairness and funding.

It seems important that individuals and organisations feed into this on the needs of people with me;cfs, particularly severe, as our needs are so often forgotten.

Here’s a link to the consultation on the commission website

The Big Conversation on Care | The Casey Commission

Help shape a fairer future

caseycommission.co.uk

Some wider information and comments from The Kings Fund on the announcement and public engagement exercise, here’s some really useful data in here too, very useful reference

https://www.kingsfund.org.uk/insight-and-analysis/press-releases/tkf-responds-prime-minister-social-care-casey-commission-public-engagement

 

[hotblack]

To participate at the moment it seems there is just one question to answer on the website
“When we are old or disabled, or have a serious illness, who should support us and how?”
You can either answer this in a short (140 characters) sentence or just vote on responses from others. Signing up requires an email address, first name and age.

 

[Lou B Lou]

Baroness Casey in a damaging Times article 29/7/3036

The Times reading public predictably ignore the statement that the 16.8 million people who self identify as disabled according to a simple survey Is NOT the number who qualify for disability benefits. This article has just operated as rage-bait.


'Even I would qualify as disabled': Baroness Casey calls for tough questions on welfare'

'According to government data from the DWP’s family resources survey, some 16.8 million people had self-reported a disability in the 2023-24 financial year, accounting for one in four British people.'

'Survey respondents are asked whether they have a physical or mental health condition or illness that has lasted or is expected to more than a year, and whether this reduces their ability to carry out day-to-day activities. A person who answers yes to both questions is considered disabled.'

'Self-reporting as disabled in the family resources survey does not mean a person is entitled to benefits. The survey assesses disability based on the definition in the Equality Act 2010, which means people are considered disabled if they have a physical or mental impairment that has “substantial” and “long-term” negative effects on their ability to do normal daily activities.'

' “Essentially, if you look at the figures, something like 16.8 million people answered questions that took you to a point that they would be classified by the Department for Work and Pensions as disabled, and I don’t buy it,” she told BBC Radio 4’s Today programme.

“I would qualify, and I’m sitting here right now. I’m not disabled, but I could qualify if I answered those questions based on my medical records, it’s simple as.”

​

‘Even I would qualify as disabled’: Baroness Casey calls for tough questions on welfare

Baroness Casey of Blackstock, who is leading a review of social care that will conclude by 2028, says nation must ask ‘who should we be looking after, and how’

www.thetimes.com

Accessible Archived version of the article:

https://archive.ph/rjlbN

.

 

[Chandelier]

From Severe ME Difrifol Cymru on Bluesky about a meeting with the new Welsh Minister for Health and Care, Mabon ap Gwynfor:

Severe ME Difrifol Cymru
On 28 July, 4 groups @severemecymru.bsky.social , @longcovidsupport.bsky.social , @wamesmecfs.bsky.social and @actionforme.bsky.social met with @mabonapgwynfor.bsky.social the new Welsh Minister for Health & Care.
He’s previously spoken up for #pwME , including in last December’s Senedd debate.

We appreciate him arranging this meeting so soon after taking office. The 4 groups worked together to agree these Key Asks (see photo [OCRed to text]):

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

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.

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.

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.

The unmet need across all severity levels was highlighted.
Mabon acknowledged the long standing frustration felt by people with #ME and #LongCovid at the lack of understanding and appropriate provision within the NHS - what’s been done has been done to us rather than with us.

 

[Chandelier]

Professor Mark Faghy is helping a MSc student recruiting participants.

Professor of Clinical Exercise Science - Clinical Exercise Physiologist - Researcher in #LongCOVID - Nature Research Award Winner 2024 - Derby UK

Bluesky post:

Mark Faghy
Participants needed for Long COVID research
I'm helping an MSc student recruit adults living with Long COVID for an important study exploring experiences of rehabilitation and recovery. app.onlinesurveys.jisc.ac.uk/s/lboro/long...

The study, Factors Influencing Experiences of Rehabilitation Among Adults with Long COVID: An Explanatory Sequential Mixed-Methods Study, aims to better understand what helps, what hinders, and how rehabilitation services are experienced by people with Long COVID.

If you're aged 18+ and living with Long COVID, your experiences could help shape future rehabilitation pathways and improve support for others facing similar challenges.
Complete the survey here: app.onlinesurveys.jisc.ac.uk/s/lboro/long...

Survey landing page:

Factors Influencing Experiences of Rehabilitation Among Adults with Long COVID: An Explanatory Sequential Mixed-Methods Study​

---

Page number 1

Participant Information​

Please read the Participant Information Sheet below carefully before deciding whether you would like to take part.


Page 1 of 11
Information Section



Exploring Factors Influencing Experiences with Rehabilitation Programmes Among Adults with Long COVID: An Explanatory Sequential Mixed-Methods Study



Welcome and thank you for considering taking part in this online survey.



Before you decide, we would like you to understand why the research is being done and what it would involve for you. Please contact one of the investigators using the contact details below if you have any questions.



The purpose of this study is to explore adults’ experiences of Long COVID and engagement with rehabilitation or rehabilitation-related support. The study aims to explore the factors that influence whether adults with Long COVID start, continue, adapt, pause, avoid, complete or stop rehabilitation. This includes exploring symptom-related, practical and psychological factors such as fatigue, breathlessness, post-exertional symptom exacerbation/post-exertional malaise (PESE/PEM), perceived safety, confidence, trust in professional advice, access to services and social support.



This study is part of a postgraduate taught student research project supported by Loughborough University. The study will be undertaken by Eleanor Warr and supervised by Mark Faghy.



You will be asked to complete an anonymous online survey, which should take approximately 15-25 minutes to complete. You do not need to do anything before completing the survey. Please note that this questionnaire includes sensitive questions about diagnosed or suspected Long COVID/post-COVID symptoms, rehabilitation experiences, healthcare or rehabilitation support, and factors that may have affected your engagement with rehabilitation. Some participants may find reflecting on their experiences emotional, upsetting or tiring. You do not have to answer any question that you do not wish to answer, and you may stop completing the survey at any time by closing the browser.



If you feel distressed or would like further support after taking part, you may wish to contact an appropriate healthcare professional or support service. The support information provided below will also be available at the end of the survey.



Healthcare Support



You may wish to contact:



· Your GP, primary care physician, or local healthcare provider

· A mental health practitioner or specialist involved in your care

· NHS 111 for non-emergency medical advice, if you are in the UK

· The relevant healthcare advice service in your country, if you are outside the UK

If you or someone else is in immediate danger, call your local emergency number, such as 999 in the UK, or go to your nearest emergency department.



Emotional Support



You may also wish to access emotional support services, such as:

· Samaritans: 116 123, free to call in the UK and Republic of Ireland

· Mind Support Line: 0300 102 1234



Long COVID-specific information and support



For Long COVID-specific information and support, you may find the following resources useful:



· Long COVID Physio – an international peer-support, education and advocacy organisation led by physiotherapists living with Long COVID, providing resources on rehabilitation, pacing and symptom management

· Long COVID Support – a UK-based patient-led charity offering peer support, information, and advocacy for people living with Long COVID

· Long COVID SOS – a patient-led campaign group raising awareness of Long COVID and advocating for improved research, recognition and support



These resources are provided for information and support only and are not a substitute for medical advice from a qualified healthcare professional.



You must be aged 18 or over and able to understand the study information and provide informed consent. To take part, you must also have experienced diagnosed or suspected Long COVID/post-COVID symptoms lasting for at least 12 weeks. You must have experience of rehabilitation or rehabilitation-related support for Long COVID. This may include being referred to or offered rehabilitation, taking part in a programme, completing a programme, pausing or stopping rehabilitation, adapting rehabilitation to suit your symptoms, or managing your recovery using rehabilitation advice at home. You must also be able to complete the survey in English.



Loughborough University will be using information/data from you to undertake this study and will act as the data controller for this study. This means that the University is responsible for looking after your information and using it properly. No identifiable personal information will be collected and so your participation in the study will be anonymous and confidential. The anonymous data will be used in the student’s dissertation. No individual will be identifiable in any reports, academic presentations, research publications or other research outputs. All information will be securely stored on the University computer systems. Anonymised data will be retained until the final project marks have been verified and for no longer than one year, unless otherwise required in line with University research data management guidance.



After you have read this information and asked any questions you may have, if you are happy to participate, please read the consent page and confirm your consent by checking the tick box at the bottom of the page. You can withdraw from the survey at any time by closing the browser. However, as the survey is anonymous, once you have submitted the survey it will not be possible to withdraw your data from the study.



Mark Faghy (Responsible Investigator), School of Sport, Exercise and Health Sciences, Loughborough University, Loughborough, Leicestershire, LE11 3TU, M.A.Faghy@lboro.ac.uk

Eleanor Warr (Student Investigator), School of Sport, Exercise and Health Sciences, Loughborough University, Loughborough, Leicestershire, LE11 3TU, E.Warr-21@student.lboro.ac.uk



What if I am not happy with how the research was conducted?

If you are not happy with how the research was conducted, please contact the Secretary of the Ethics Review Sub-Committee, Research & Innovation Office, Hazlerigg Building, Loughborough University, Epinal Way, Loughborough, LE11 3TU. Tel: 01509 222423. Email: researchpolicy@lboro.ac.uk



The University also has policies relating to Research Misconduct and Whistle Blowing which are available online at https://www.lboro.ac.uk/internal/research-ethics-integrity/research-integrity/ .



If you require any further information regarding the General Data Protection Regulations, please see: https://www.lboro.ac.uk/privacy/research-privacy/

 

[Jonathan Edwards]

The trouble is that this sort of project is no substitute for proper research into whether or not rehabilitation is effective. Health care is not about delivering nice experiences. It is about providing accurate information and making people better.

it may help for researchers to see how mixed responses are if they are but the sample will not be representative so I see little point.

 

[Hutan]

I'm helping an MSc student recruit adults living with Long COVID for an important study exploring experiences of rehabilitation and recovery.

but the sample will not be representative so I see little point.

Yes, thinking ahead to a likely outcome, they might find '50% of respondents did not complete their course of rehabilitation', but, so what? did the online recruitment method result in a higher percentage of people who didn't finish their course? Or a lower percentage? The result is pretty meaningless and easily dismissed.

The student could instead carefully follow a number of people sequentially admitted to a Long Covid clinic, asking about their experience and outcomes. That would actually tell us something useful.

 

[Chandelier]

Tern on Twitter:

---

Just the sickness absence rate of the biggest employer in Europe.