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

These newspapers are part of the Reach plc media conglomerate which in addition to three UK national titles - Mirror, Express and Star and the Scottish Daily Record, owns the largest part of UK local media, and although the corporate image is of separate locally published material papers/online news sites, the bulk of the output is centrally distributed low quality journalism and clickbait.

Article also in the Express: https://www.express.co.uk/life-style/health/1781459/feeling-tired-fatigue-causes
 
I still think it's advertorial clickbait designed to attract customers to a private company, not serious journalism or medical information.

I think it's an advantage that CFS is described so briefly as he is clearly clueless about it and has just included it for completeness. Since it won't show on any of his blood tests it's of no interest to him. I'd rather have minimal info like this than someone ignorant expands on it and gets it horribly wrong.

Best ignored I think.
 
CRG said:
These newspapers are part of the Reach plc media conglomerate which in addition to three UK national titles - Mirror, Express and Star and the Scottish Daily Record, owns the largest part of UK local media, and although the corporate image is of separate locally published material papers/online news sites, the bulk of the output is centrally distributed low quality journalism and clickbait.

Article also in the Express: https://www.express.co.uk/life-style/health/1781459/feeling-tired-fatigue-causes
Click to expand...
Yeah syndication of articles is pretty common anyway not just to outlets under same ownership.
 
Moved post

Trish said:
Back to the subject of SW being given honorary membership of the Society of Occupational Medicine, and tweeters objecting being blocked, there's an article by Long Covid Advocacy:

Quote:
Dear Society of Occupational Medicine, will you listen to people with M.E. and Long Covid?
Concern at the mass blocking by SOM...
We are hosting writer Kirstie Sivapalan this week who wrote an inspiring open letter to the Society of Occupational Medicine.

Patients with M.E. and Long Covid were blocked by the twitter account @SOMCEO for their valid concern regarding the awarding of honorary membership to Sir Simon Wessely. A controversial figure in the medical world.

Suppressing important patient testimony is not in the interest of common dialogue or medical discourse. We are concerned at the level of influence Wessely exerted in this act of institutional epistemic harm. Were SOM Wesslied?
[...]

In response a small team of people came together to work on an open letter written by Kirstie Sivapalan. If you want add your voice you can add your name to our open letter through this form or…

More at link.
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FYI at S4ME.......

IN THIS MONTH’S NEWSLETTER...NHS Health at Work Network News Update

'I hope you have all been able to take advantage of some long-awaited sunshine over these last few weeks. It has been lovely after a packed day at work to enjoy some walks in the warm evenings.

Our bulletin remains packed with some helpful information for you to digest. Following our Board meeting in May, both Dr Alina Mohan and myself have been engaging with various stakeholders regarding the ‘Entonox’ concerns that have arisen and you will see a summary of findings in this bulletin.

June also saw the annual FOM/SOM conference being held in Newcastle where the new SEQOHS standards were launched. If you haven’t seen them yet then they can be found via 2023-SEQOHS-Standards-March-2023.pdf (fom.ac.uk) . The NHS specific standards are still being finalised, and the Network is supporting NHS England in developing these alongside the Faculty of Occupational Medicine. '
...'

This newsletter contains some great learning resources on long term conditions, cultural competence, and public health
Population Health and Health Inequalities: Education and Training Newsletter (office.com)



The NHS Health at Work Network brings together all OH teams providing health and wellbeing services to NHS OH staff. It is dedicated to providing consistent, high quality health at work services to all NHS staff through collaborative working. Please share this bulletin with colleagues and encourage them to register to receive it regularly.
Please get in touch if you have any queries or comments, if there is anything you would like to see in future issues of the bulletin, or if you have news to share.

Hilary Winch, Chair hilary.winch@nnuh.nhs.uk
Andrew Gilbey, General Manager admin@nhshealthatwork.co.uk

Postal address: NHS Health at Work, PO Box 857, York YO31 6FR'

 
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Merged thread

DIY SOS for Family with Ehlers-Danlos syndrome, postural orthostic tachycardia syndrome, fibromyalgia and gastroparesis

The Big Build - Bangor
DIY SOS Series 31

For the first time ever, the DIY SOS team head to Bangor in Northern Ireland, the childhood hometown of our build manager Mark Miller, to help the McCreight family.

Mandy McCreight suffers from a variety of medical issues, including Ehlers-Danlos syndrome, postural orthostic tachycardia syndrome, fibromyalgia and gastroparesis, which leaves her bed-bound over 80 per cent of the time. She often stays upstairs in her bedroom for days at a time, as the stairs are too difficult to negotiate. She is isolated in her bedroom and missing out on family life. Ben and Kara also suffer from Ehlers-Danlos syndrome and have mobility issues. Dad Davey looks after everyone, but now he is suffering from a back injury. The entire family are under real stress, and the house is not wheelchair friendly, making the situation unbearable.

The DIY SOS team, aided by local designer Suzanne Sundara-Garuda and hundreds of volunteers, reconfigure the whole house, creating a future-proof home that will bring this family back together.

https://www.bbc.co.uk/programmes/m000sm74
 
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Oh, cool. Disability porn as entertainment. Basically the charity model, only some get help, but it's systematic. That's just great.

Good for Mandy, of course, but this is not how to deal with disability. This is a circus.
 
Merged thread

Tiredness and headaches could be a sign you have hidden illness that affects 250,000 people

i haven't watched the video at the beginning of this article.

Feeling tired after a long day at work or staying out too late is one thing, but feeling constantly exhausted after staying in and getting a good night’s sleep is another.

Myalgic encephalomyelitis (ME) may be a term you’ve never even heard of before. This debilitating condition impacts 250,000 people in the UK alone, and around 17 million people worldwide.

ME is a complex chronic illness of unknown origin with an array of symptoms that can impact the suffers’ life on a spectrum ranging from mild, moderate, severe to very severe.

According to the NHS website, ME can affect anyone including children and is a long-term condition with a wide variety of symptoms, most commonly extreme tiredness. Persistent fatigue and post-exertional malaise (PEM) are the most commonly reported features of this condition, where the sufferer will experience a drastic flare-up of symptoms for a longer period of time.

As stated by the NHS website, here are the symptoms of ME to look out for......
Click to expand...

Previously, this unusual illness has been branded psychological, often related to ‘hysteria’ due to more women than men suffering from the condition. Cases of Long Covid, following the pandemic, have had a drastic impact on the research and stigma of ME due to their similar nature.

This has allowed crucial research to be done into ME alongside Long Covid. A few studies are currently being done in the UK as well as in America investigating these potential causes.
Click to expand...
Management
In the past, graded exercise therapy (GET) was the recommended treatment but this was quite recently debunked. GET is a type of therapy where exercise is gradually introduced with the idea that it can increase energy limits and reduce symptoms.

We now know that this treatment was actually detrimental, causing many ME patients to worsen their condition, with some even losing their lives. The NHS website states: “Graded exercise therapy (GET) – which aims to gradually increase physical activity levels - is not recommended for people with ME/CFS”

Currently, the recommended forms of management from the NHS website include energy management, pacing, pain medication, cognitive behavioural therapy (CBT) and anti-depressants to aid with the mental health effects of the condition.
Click to expand...

https://www.liverpoolecho.co.uk/news/health/tiredness-headaches-could-sign-you-27305179

(pity that article relies on the NHS website info.)
 
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Dolphin said:
The tweets are by Dr Jessica Eccles. They say:
1/Save the date 8th Sept 2023 #pain and #fatigue FREE public engagement event
@BSMSMedSchool
@SussexUni
campus. We welcome #pwME #MECFS #fibromyalgia #LongCovid advocates and practitioners to discuss past and shape future #research esp #LDN

2/ eventbrite link coming soon. Sessions will be recorded and available online. Quite area and parking provided and opportunity to submit questions in advance
Click to expand...
A link has now been posted:
https://www.eventbrite.co.uk/e/look...ain-and-fatigue-research-tickets-686500189547
 
Merged thread

Fermanagh mum sheds a light on impact of her ME diagnosis

Married to her best friend. A mother to a healthy baby boy. An adrenaline junkie, world traveller, baking enthusiast and gym lover - Laura O’Kane was living her dream life.

But after being very severely affected by ME (Myalgic Encephalomyelitis) for two years, the 32-year-old is now experiencing what she can only describe as a “living nightmare”.

For over 730 days, the Letterbreen mother-of-one has been trapped in a hospital bed, with the chronic fatigue caused by the long-term condition leaving her completely disabled and unable to care for herself.

“Living with ME is a living nightmare,” said Laura, shedding a light on the horrendous, debilitating illness that has “destroyed her life”.

“I couldn’t do this without the help of my family who have got me through the darkest of days.

“My son Arthur has been the sunshine that keeps on shining and gives me inner strength to keep fighting every day,” she said.

In a bid to help find a cure for this devastating illness, Laura’s husband, Damien O’Kane, has started a fundraiser for ME Research UK.

“Multi-system chronic diseases like ME are not too mysterious or complicated to solve. We just haven’t devoted enough resources into solving them.

“In the absence of proper government support, patients rely on charities such as ME Research UK to give us hope for the future,” said Laura.

Guidelines

Updated UK NICE guidelines in 2021 stated patients should be referred to an ME specialist team, but despite years of campaigning there is still no specific referral pathway for ME patients in Northern Ireland.

The local healthcare team have been very supportive and understanding to Laura’s needs, but there is no formal training for ME in Northern Ireland.
Click to expand...

https://www.impartialreporter.com/news/23743986.fermanagh-mum-sheds-light-impact-diagnosis/
 
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Common symptoms of ME include feeling extremely tired all the time – where the sufferer may find it very hard to do daily activities, still feeling tired after resting or sleeping, taking a long time to recover after physical activity, problems sleeping, such as waking up often during the night, and problems with thinking, memory and concentration.
Click to expand...
No mention of PEM or LTSE from exercise.
 
It is dreadful that the terms "tired" and "extremely tired" are being repeated all over the place. The "tired" word is becoming embedded in the media. We were getting away from the "tiredness" idea - now it's being repeated endlessly. The NHS ME/CFS pages MUST be updated and get rid of the T-word, amongst other vital changes to the pages.
 
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