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

Wales:

 

Source: Sussex & Kent ME/CFS Society
Date: September 19, 2023


Brighton & Sussex Medical School (BSMS) Engagement Event
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On the afternoon of Friday September 8th a good number of professionals and patients attended the meeting at Sussex University organised by Brain-Body Neuroscience researcher Dr Jessica Eccles 'Looking Forwards Formulating Next Steps' about ME/CFS/FM research.

After lunch delegates heard interesting presentations on the recent studies carried out into ME/CFS/FM at BSMS given by Prof Kevin Davies, Dr Jessica Eccles, Prof Harm Van Marwijk and Dr Monica Bolton who spoke about her experience of suffering from severe ME/CFS for some years until she was helped by low dose Naltrexone and the potential benefit of further researching this treatment.

During the Q & A session patients spoke of how conditions could be best adapted for those taking part in studies for their comfort.

Representatives from a number of UK NHS Specialist ME/CFS Services were present including clinicians from the Sussex-wide service and the Kent & Medway service along with Anna Gregorowski from the British Association for Clinicians in ME/CFS.

Prof Neil Harrison said: 'We are grateful to Sussex & Kent ME/CFS Society members who took part in this research where we first investigated the role of inflammation-induced pain and fatigue in fibromyalgia and ME/CFS and then assessed the involvement of variant connective tissue.'

Actress Jenny Seagrove said: 'I am thrilled to hear that research being carried out into ME/CFS and fibromyalgia at Sussex University by a team of doctors led by Dr Jessica Eccles is going very well. Well done everyone who is participating in this important work. It may be the key to unlocking the future and that would benefit so very many. Bravo.'

 

'This blog by Dr Nick Wilkinson, RCPCH Officer for Wales, explores the concept of the missing middle.'

The missing middle - who are they and why do they matter? | RCPCH

 

https://www.bmj.com/content/383/bmj.p2372.full
We need better care for long covid and ME/CFS
BMJ 2023; 383 doi: https://doi.org/10.1136/bmj.p2372 (Published 17 October 2023)Cite this as: BMJ 2023;3832372

1. Alexis Gilbert, consultant in health protection and patient with severe long covid

1. 
   Author affiliations

1. Leeds, UK

1. Alexis.Gilbert@gmail.com

As a patient with severe long covid and myalgic encephalomyelitis (ME), I was pleased to see Dean’s article about a long covid clinic.1 I went from working on-call as a consultant to being unable to stand or feed myself with long covid. I remain severely affected a year later and now face losing my job. Altmann and colleagues estimate that one in 10 people …

 

Brighton woman travels the world despite chronic fatigue

https://www.bbc.com/news/uk-england-sussex-67349179

A woman who lives with chronic fatigue syndrome has told the BBC she has visited "virtually every country in the world" in the last 20 years.
—-
Each to their own. Just travelling around on holiday continuously I don’t would provide me enough meaning in my life to be happy.

 

I found the letter online:

 

I love this letter!
Thanks Dr Alexis Gilbert

 

Merged thread

Doctors said her constant exhaustion was due to depression and A-level stress... then she could barely walk

Doctors said her constant exhaustion was due to depression and A-level stress... then she could barely walk - Manchester Evening News

 

"Woman told exhaustion was just ‘A-level stress’ overcomes debilitating diagnosis: Elizabeth Hope, who was diagnosed with ME, has since overcome her adversity to become an award-winning wheelchair dancer"

https://www.independent.co.uk/life-.../me-symptoms-wheelchair-dancing-b2450860.html

 

Moved from the general Long Covid news thread

https://twitter.com/user/status/1732435195209379947

 

Moved from the general Long Covid news thread

Opinion piece in the BMJ

Hancock’s covid inquiry evidence offers few clues as to why long covid was sidelined

Questions remain as to why long covid wasn't a political priority, writes Ondine Sherwood

In the early weeks and months of the covid-19 pandemic, it was left to patient advocates like us at Long Covid SOS to bring the issue of long term morbidity after a covid-19 infection to the notice of the UK government. Despite a series of letters to policy makers, some of which were published in The BMJ,12 we and other groups struggled to get our voices heard. Notwithstanding the creation of NHS England’s long covid taskforce and ministerial roundtables on the subject, it became clear to us that policy making decisions throughout the pandemic were not being informed by the prevalence and risk of long covid. This was reinforced by the dearth of public messaging on long covid, resulting in widespread ignorance of the condition and missed opportunities to promote protective behaviour.

We are part of a group of long covid charities who are core participants in the UK covid inquiry. The Long Covid Group has established six framework questions that we would like module 2 of the inquiry to answer.3 We looked to Matt Hancock to provide clarity and answers to two of these questions: firstly, was the prevalence and the risk of long covid taken into account when decisions, like the imposition and then easing of non-pharmaceutical interventions, were adopted; and secondly, how, and to what extent, did decision makers warn the public about the risk of developing long covid and take the disease into account in public health communications.

https://www.bmj.com/content/383/bmj.p2902

Closest it gets to mentioning ME/CFS
"Another theme in Hancock’s evidence on long covid was his tendency to blame clinicians for the lack of public campaigns and delays in action, deflecting the responsibility away from policy makers. Describing long covid as a “range of conditions,” he claimed that the NHS “found long covid quite difficult to categorise at first.”6 This rather contradicts his assertions that Chris Whitty, the chief medical officer for England, had raised concerns early on about post-viral syndromes, which are of course nothing new, and that he was “alive” to the risk of post viral syndromes even before the infection “reached our shores.”6"

 

Moved post

inews Warning 100,000 could develop long Covid after hospital cases surge

quotes:

“So even assuming only 20 per cent get infected this wave – which I think is too small a number – that would be about 11 million people getting it in England and even a 1 per cent new Long Covid rate would be 110,000 people,” Professor Pagel argues.

Other scientists agree that the UK is set for a spike in new long Covid cases.

Professor Steve Griffin, of Leeds University, estimated that there could be tens of thousands of new cases in the coming months “as a minimum”.

“Most upsettingly, this will include children and young people, which are often overlooked when it comes to this dreadful disease and are left exposed due to the total lack of proper mitigations in schools,” he added.

...

Professor Griffin described the high number of long Covid cases as “extremely worrying”.

“Chronic illness is historically not well supported for a variety of conditions, and what services that were set up to deal with this condition are being dramatically scaled back,” he said.

“The risk of this occurring simply doesn’t seem to be in the national consciousness anymore, and long Covid sufferers can experience similar gaslighting as seen in the past for those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).”

 

Why the past tense? Nothing's changed. ME sufferers used to be gaslighted in the past, we still are, but we used to be, too. Mitch Edberg-based medicine.

Although, there are no lockdowns and the whole wave is happening with silence all around, the public in general has tuned out entirely. The dominant belief remains that it's lockdown fear, or whatever. That's still around, the belief never went away, or at least the claims are still there, that it's not caused by the infections. And yet some do recognize that that's just silly nonsense.

So we have different competing versions of the truth, coming from corners of the same profession and the authorities they represent. The best conditions to destroy public trust, that truth can be knowable, rather than a matter of opinion. Coming from an expert profession, this is devastating. We are fully in a Truthiness era.

 

Merged thread - recovery story

Was given this by a family friend, just adding it to save it somewhere