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

Surely ill health retirement should be available for NHS workers who are in their pension scheme and are long term sick with any illness whether it is classed as industrial injury or not.
Highly unlikely, with ill health retirement at full rate you need an illness that is guaranteed it won’t improve. And it’s guaranteed there is no treatment.

With LC both are unknown, you would be lucky to get ill health retired at half rate with a review after a year or three.

You will most likely be off sick, then dismissed for sickness after an average time scale (after pay and SSP has finished) with no industrial injury payment paperwork, or extended pay or grace period, and no associated benefits.

You will be no better off than say, someone who develops ME/CFS one day out of the blue. You would be much worse off than, say, a fellow nurse who is attacked by a patient and left unable to work.
 

Welsh Senedd Debate on Severe and Very Severe ME

DEBATE POSTPONED AGAIN - TO 10TH DECEMBER!

We’re sorry to report that there’s been a further postponement of the Welsh Senedd Debate on Motion 8884 – Severe and Very Severe ME - to be led by Adam Price, MS.

We obviously have no control over how Senedd business is managed, and there are many demands on the Senedd timetable, especially in the build-up to next May’s elections.

The debate has been re-allocated to the Plenary Session on the afternoon of Wednesday, December 10th.

There is a public gallery, and it would be great to fill it! The debate will also be live-streamed / recorded on Senedd TV. We’ll let you know more details as soon as we get them.

Adam stresses that personal stories carry great weight in such events - they are the lived experiences which help politicians connect with the lives of their constituents, their voters. With Senedd elections approaching fast, now is a good time to enlist your Senedd Members’ support – because they also want yours!

As ever, if you’d like to get in touch please email: severeme.cymru@gmail.com

Diolch / Thanks

Rob Messenger

Severe ME Difrifol Cymru

WAMES
Action for ME
ME Association
Adam Price
 

QICN to close long Covid nursing network​

The Queen’s Institute of Community Nursing (QICN) has made the ‘difficult decision’ to close its long Covid network.​
The decision was made after funding that supported the group came to an end and as the charity moves to focus on its new field-specific faculties.​
Established in 2021, the long Covid nursing network was founded to explore issues and practice related to the management of long Covid in community, primary care and social care.​
 

How We Make Real Progress on ME - 7 Big Things​

Written by Rory Preston & Lexi

1. Increase public funding into biomedical research​
2. Stop funding disproven and harmful approaches​
3. Establish a national registry for ME patients​
4. Establish NHS ‘Centres of Excellence’ for ME​
5. Develop NHS protocol for severe and very severe ME​
6. Create and update a list of off-label medications for ME​
7. Education of healthcare professionals​
 

Chronic Illness Benefits Set for Complete Overhaul by 2027

Planned Reform

The Social Security Minister plans to introduce new regulations as the first step toward a complete overhaul of benefits for people with long-term health conditions. Detailed work on updated guidelines is expected next year, with a new system targeted for 2027.

Triggering Tribunal Case
The reform follows a Medical Appeal Tribunal case questioning whether decade-old guidelines adequately support people with chronic illnesses such as long covid and chronic fatigue syndrome. The appellant, suffering from chronic fatigue since long covid in 2020, was rated only mildly affected, receiving 20% of the Long Term Incapacity Allowance. This was compared with higher assessments for physical injuries such as losing a thumb.

Concerns Over Current Guidelines
The Tribunal noted doubts about whether existing CFS/ME guidance is fit for purpose, especially for post-viral conditions presenting varied symptoms. Although the appeal was dismissed, the Tribunal asked the Health Department to explain how far guideline reviews have been considered.

Rising Long Covid Cases
Deputy Louise Doublet highlighted increasing long covid cases and concerns over the closure of Jersey’s long covid clinic. She called for clearer care pathways for chronic conditions.

Department Response
The Social Security Department stated it is satisfied that current guidelines offer fair awards to those with chronic fatigue and similar illnesses.
 
I wish people organising these would give more notice, a few days is not enough notice for most people to write to their MPs and far too short notice for MPs to arrange anyhing. At least it’s a Wednesday so some may be milling about in between sessions but you will just get those with nothing else to do. It’s really bad campaigning IMHO.
I suspect that backbenchers apply for a debate, but they do not know themselves whether it will be selected for a particular session until a short time before the date.
 
Watched bits of the debate. Grateful to all the MPs who attended but also somewhat frustrated by some of the content. For example, Jeremy Hunt spoke about one of his constituents whose parents moved the whole family to the US in desperation so that their son who could get treatment.

Thankfully, his constituent either recovered or improved significantly. However, I am concerned that Hunt suggested that the treatment was effective. All that anyone can say is that the patient improved following the treatment. Nobody can know if the treatment had a therapeutic effect. I think Hunt said that this was 6 years ago and that treatment was part of a trial. Presumably, if there was any evidence that the treatment was effective we would know about it by now.

What concerns me is that people listening to Hunt might get the impression that there are effective treatments in the US or elsewhere in private practice, and that the need is to ensure that these treatments are made available in the UK on the NHS. Unfortunately, that is completely wrong.

The message from advocates needs be that there are no validated treatments, and that there is desperate need for appropriate physician-led specialist services with links to research institutions, and a huge increase in high-quality research.

I also wish advocates could agree to use the term ME/CFS instead of ME, as has been discussed at length on here.

[Edit: I may write to Sonya to ask if she can convey this to Hunt. He is a potentially useful ally and it’s important for him to understand the issues.]
 
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I watched the debate live yesterday and, thinking back to the last Westminster Hall debate in I think, 2018, was encouraged that the level of interest and knowledge from MPs felt more substantial and genuine. The commitment to moving things on felt sincere.

I was concerned that the Minister, Ashley Dalton, made a complete hash of saying Myalgic Encephalomylitis not once but on both occasions that she said it. It concerned me that she can't have said it very often and I didn't honestly get a sense of real commitment from her. I would be pleased to be proved wrong.

In contrast Tessa Munt MP who opened the debate was articulate, knowledgeable annd resolute.
"Based on parliamentary answers and official announcements, I estimate that around £10 million has been invested in ME research over the past 12 years. To put that figure into context, on the current numbers that is about 60p per person living with ME per year. Four times as much was spent on a helicopter for the former Prime Minister as has been spent on ME. We spent £125 million—12 times as much—on a bat tunnel for HS2. We spent £10 billion—about 1,000 times as much—on personal protective equipment that turned out to be unusable. Money talks, and the record of the past decade makes it clear to people with ME that their collective futures have been valued by successive Governments at astonishingly little." She promised to hold the Minister's feet to the fire.



One or two concerns- as @Robert 1973 said, Jeremy Hunt talked of his constituent, a young man, whose family had moved across to the US and had taken part in a trial and was now recovering. I too was concerned that this might be interpreted as there being a treatment for ME and there was a reference to there being a postcode lottery in the UK which might imply that there were treatments available to some, instead of the absolutely nothing that is our lot.
But as I said, I thought the level of knowledge was higher and sincere which was encouraging.

Thanks to Adam @BrokenBattery for putting out a recording of the debate. Not sure if I can get it on here.
edit: link remove because it is available above.
 
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noting Rachael Maskell's contribution (my bolding):

I am really grateful to the Minister. We know that, at the heart of this, we need to ensure that all clinicians have a basis of training, and that is certainly missing at the moment. We see misdiagnosis, and we see some provision, including fatigue clinics, providing the wrong interventions. Will she ensure that there is a strategy around training clinicians and making it mandatory?
 

NHS issues flu jab SOS with worst of winter only weeks away​


Related 1600-word article in the german newspaper Die Zeit:
Are we facing an especially severe flu wave?

Unusually early, unusually fast: A multiply mutated H3N2 influenza variant is making experts nervous. Authorities are urging people to get a flu shot without delay.
Early and Rapid Global Spread
Health authorities in several countries warn that the current influenza season may become unusually severe. In the United Kingdom, the season began more than five weeks earlier than usual, with test positivity already above the ten-percent threshold. Transmission is faster than in typical years, with an estimated R value of 1.4 instead of the usual 1.1. Similar early and rapid spread has been observed in Japan, Liechtenstein, Iceland, Norway, and parts of the United States, where emergency departments are already seeing numbers close to last season’s peak. Experts believe that influenza viruses currently spread more easily than usual, even before winter conditions add further advantages.

The Emergence of H3N2 Subclade K
A key concern is a newly emerged and heavily mutated H3N2 subvariant. While H3N2 has circulated for decades and typically causes more severe illness in older adults, the virus accumulated an unusually large number of genetic changes while circulating in the Southern Hemisphere. These mutations affect the haemagglutinin gene, which encodes the surface protein enabling the virus to bind to human cells. The resulting subclade, labeled K, spreads more efficiently and has begun to dominate wherever it appears. This raises worries that it may more easily bypass existing immunity.

Vaccine Match and Effectiveness
Because influenza vaccines must be designed months in advance, this year’s formulations do not include the newly emerged K mutations, causing a mismatch. Experts highlight that mutations in haemagglutinin may reduce antibody effectiveness. Initial data from a preliminary UK study, however, show that vaccines still reduce hospitalizations by 30–40 percent in adults and 70–75 percent in children. Researchers caution that real-world effectiveness can only be assessed after the season, especially once the virus reaches older age groups. Despite the mismatch, vaccination remains strongly recommended because it protects against other circulating viruses such as H1N1 and Influenza B and can still prevent severe outcomes through broader T-cell immunity.

Implications for Germany and Europe
Germany has so far seen only sporadic influenza detections, and experts stress that the course of a season cannot be predicted. Previous strong H3N2 waves may provide partial residual immunity, though levels have likely waned. The European Centre for Disease Prevention and Control warns that low vaccination coverage could make an unusually heavy season more likely and increase pressure on healthcare systems. Specialists emphasize the need for close monitoring and preparedness for potentially higher patient numbers.
 
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Covid 19 Inquiry report reveals Government’s catastrophic failure to manage the pandemic, says BMA​

Press release by the BMA.


AI Summary:
  • The report concludes that the UK governments responded far too slowly and complacently, leading to a mandatory lockdown and an estimated 23,000 avoidable deaths in England.
  • It highlights severe governmental failings, including misleading claims of preparedness, ignored expert advice, and inadequate test-and-trace capacity.
  • Frontline healthcare workers faced overwhelming pressures and unacceptable risks due to insufficient PPE and delayed action.
  • The Inquiry attributes failures to both flawed systems and individual decisions, stressing the need for clearer objectives, detailed preparedness plans, and properly resourced public health systems.
  • The BMA welcomes recommendations to better protect vulnerable groups, including ethnic minorities, and insists that the experiences of healthcare workers and those with Long Covid inform future pandemic planning.
 
somewhat frustrated by some of the content. For example, Jeremy Hunt spoke about one of his constituents whose parents moved the whole family to the US in desperation so that their son who could get treatment.

Thankfully, his constituent either recovered or improved significantly. However, I am concerned that Hunt suggested that the treatment was effective. All that anyone can say is that the patient improved following the treatment. Nobody can know if the treatment had a therapeutic effect. I think Hunt said that this was 6 years ago and that treatment was part of a trial. Presumably, if there was any evidence that the treatment was effective we would know about it by now.

What concerns me is that people listening to Hunt might get the impression that there are effective treatments in the US or elsewhere in private practice, and that the need is to ensure that these treatments are made available in the UK on the NHS. Unfortunately, that is completely wrong.

I'm watching that just now and feel the same. Also downplayed the estimated prevalence, said things were improving due to Covid (they're not), and heaped a lot of praise on his Government. Still we need any allies we can find.
 

Lady Hallett Shouldn’t Hold Her Breath, says Health Campaign Group​

AI summary:
  • The COVID Airborne Transmission Alliance (CATA) warns Baroness Hallett not to expect swift implementation of recommendations from the UK COVID-19 Inquiry’s Module 2, criticising the government’s ongoing failure to protect healthcare workers from airborne diseases.
  • CATA leaders argue that the government has produced ambitious strategies and documents but delivered little, lacking effective monitoring or plans to control airborne infections in healthcare settings.
  • They highlight systemic failings at UKHSA, including missed deliverables, bureaucratic delays, underspending, and key leadership vacancies, undermining pandemic preparedness.
  • Experts point to inconsistent guidance, scientific misunderstandings within government, delayed pandemic strategies, and an ineffective Exercise Pegasus that excluded important stakeholders.
  • The Alliance warns that relying heavily on vaccines instead of improving ventilation and workplace safety leaves the UK increasingly vulnerable, eroding healthcare workers’ trust in their employers to protect them and patients.

Lady Hallett Shouldn’t Hold Her Breath, says Health Campaign Group​

November 21, 2025
The leaders of the COVID Airborne Transmission Alliance (CATA) are advising Baroness Hallett not to hold her breath while waiting for implementation of recommendations in the long-awaited Module 2 report of the long-running COVID-19 Inquiry. The group, formed to represent tens of thousands of healthcare professional and employee bodies, was a core participant for Module 3. It continues to highlight the UK’s failure to protect healthcare workers from life-changing respiratory diseases.
“The country has invested millions of pounds into the Inquiry and a huge amount of faith into the process to help us learn lessons. COVID-19 has caused over 250,000 deaths and scientists’ understanding of the wide variety of long-term health consequences is advancing rapidly. There is a realisation that the burden of Long-COVID on the nation’s healthcare systems will be far greater than was realised in the early days of the pandemic.” says Ms Kamini Gadhok MBE, Vice-Chair of CATA.

CATA’s Executive Team point out that the Government’s response to the previous recommendations of the Inquiry about pandemic preparedness have faltered.

“The Government outlined an ambitious strategy and launched a plethora of documents and initiatives. However, it has been short on delivery. There is no monitoring or real plan to control any airborne diseases in healthcare settings and it’s costing the UK taxpayer billions and making hospitals the best place to go to catch COVID‑19, or flu, or potentially even TB, Scarlet Fever or Measles” says safety expert, David Osborn. Osborn’s relentless pursuit of concealed documents through Freedom of Information requests continues to reveal the extent to which scientific advice has been buried, ignored and appear to have been concealed from the Inquiry. The information being discovered will be forwarded to the Inquiry’s Legal Team.

The Alliance leadership cite the independent review of the UK’s Biological Safety Strategy by the Centre for Long-Term Resilience. The review directly referenced Lady Hallett, who stated biological surveillance was“best defence” against future pandemics. However, they stated that UKHSA had failed to achieve deliverables, has underspent, has created or encountered complex bureaucracy and delays.

“It is not surprising that UKHSA has failed its examination on pandemic planning, given the designated lead officer role for pandemics, the Director General for Strategy, Policy and Programmes appears to have been vacant for most of the year,”,” says Dr Barry Jones, Chair of the Alliance. “The absence of progress in this area might be expected under the leadership of the new chief of UKHSA, Professor Susan Hopkins. She was one of the lead advisers during the COVID-19 pandemic, during which the UK had the second largest death toll for healthcare workers in the developed world.”

The Module 2 report highlights that there was emerging evidence early on in the Pandemic that Covid-19 was airborne but that it took time for the Government to introduce campaign messages to the public alerting them to the importance of ventilation.

This was combined with a lack of consistency in applying this knowledge to guidance for the NHS workforce. As Module 2 is about Core decision-making and political governance, the importance of this cannot be underestimated as the inconsistency continues.

“If Lady Hallett is hoping for decisive and informed leadership from the Government, she is likely to be disappointed. In correspondence with CATA, the Minister responsible, Ashley Dalton seems utterly confused about the science and law published by public bodies, This is despite clear obligations set out by the WHO on the control of the virus and signing the WHO Pandemic Accord,” says Professor Kevin Bampton, CEO of the British Occupational Hygiene Society. The British Occupational Hygiene Society (BOHS), a leading scientific charity, recently published guidance on personal protective equipment to control the spread of respiratory pathogens, including COVID-19, following confused statements from NHS bodies and UKHSA on the difference between face masks and filtering respirators. COSHH-and-Healthcare-Respiratory-Protection.pdf

Professor Bampton continues, “In addition, despite the response made to the Module 1 recommendations, DHSC’s Pandemic Preparedness Strategy is overdue for publication. Neither is there further progress towards a DHSC UK-wide Pandemic Respiratory Disease Response Plan. The Government has explained that this delay is pending the outcome of this Summer’s pandemic planning exercise, Exercise Pegasus.”

The Alliance point out that Exercise Pegasus, which took place during a peak holiday period and largely involved senior leaders, fails to meet the recommendations of the Centre for Long-Term Resilience review.

“Exercise Pegasus is welcome and hopefully it will inform practice, unlike previous exercises before the pandemic. However, what has been delivered is a poor relation to a similar exercise run in the Netherlands,” says Dr Barry Jones, Chair of CATA, who gave powerful evidence to the Inquiry in Module 3. “Not all the key stakeholders (including Inquiry-appointed IPC experts) were invited to participate or observe. This is an area where the country needs openness and transparency, which was in such short supply when it was needed during the height of the pandemic. The lack of such involvement renders the exercise not fit for purpose.

The Alliance highlights that, rather than focusing on safer, well-ventilated workplaces, the Government relies on expensive and unsustainable vaccine provision. They explain that although vaccines can significantly reduce impacts of disease, they do not prevent healthcare workers from being infectious and therefore are not effective in preventing vulnerable patients from catching diseases.

The Alliance expresses concerns that the continuing absence of any real change to creating resilience in the UK against airborne pandemic pathogens leaves us more, rather than less vulnerable, as healthcare professionals no longer trust their employers to protect them or their patients against harm.
 
The BMA welcomes recommendations to better protect vulnerable groups, including ethnic minorities, and insists that the experiences of healthcare workers and those with Long Covid inform future pandemic planning.
Uh. But fuck everyone who is already screwed? Yeah, figures. Why worry about such little things as millions of people whose lives might as well have ended when we can also not give a damn and pretend like the next pandemic will not be worse in every single way because zero lessons have been taken into account.
 
Uh. But fuck everyone who is already screwed? Yeah, figures. Why worry about such little things as millions of people whose lives might as well have ended when we can also not give a damn and pretend like the next pandemic will not be worse in every single way because zero lessons have been taken into account.
Its not like they are actually willing to protect their future patients from Long Covid even now. The percentage that are catching Covid in hospital is enormous (where its measured) and they don't even bother to test patients anymore let alone diagnose them with Long Covid. Its a laughable that they would do anything about protecting people with a future pandemic when they are fighting so hard against protecting people in this one.
 
Its not like they are actually willing to protect their future patients from Long Covid even now. The percentage that are catching Covid in hospital is enormous (where its measured) and they don't even bother to test patients anymore let alone diagnose them with Long Covid. Its a laughable that they would do anything about protecting people with a future pandemic when they are fighting so hard against protecting people in this one.

Which is why the medico-legal ultimatum was spelt out to them by the Covid Airborne Transmission Alliance (CATA), and BOHS, as now in this BOSH guidance:

COSHH and Healthcare Respiratory Protection

- which I found tucked away in the news provided above by Chandelier

with the AI summary that:

"... safety expert, David Osborn’s relentless pursuit of concealed documents through Freedom of Information requests continues to reveal the extent to which scientific advice has been buried, ignored and appear to have been concealed from the Inquiry.

The information being discovered will be forwarded to the Inquiry’s Legal Team.

... The British Occupational Hygiene Society (BOHS), a leading scientific charity, recently published guidance on personal protective equipment to control the spread of respiratory pathogens, including COVID-19, following confused statements from NHS bodies and UKHSA on the difference between face masks and filtering respirators. COSHH and Healthcare Respiratory Protection.pdf"

------------------

I wish I could summarise this guidance document. It is - necessarily - very scientifically and procedurally specific. COSHH is law on the regulation of hazardous substances - Control of Substances Hazardous to Health (COSHH) - regulated by the Health & Safety Executive (HSE).

I've found COSHH handy to require disclosure of the safety data and ingredients of substances used in building materials. But it also covers air-bourne germs.

And we recognise this pursuit over our heads, as relentless as we can be too, in pursuit of an end to suffering.

As with building materials, there is a grey area where the workplace is in other people's homes, but it can still apply for the protection of the residents as well as the workers.
 
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