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

 

Moved post

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'

 

another not so helpful petition
https://www.change.org/p/end-the-stigma-on-chronic-fatigue-syndrome

 

Aarrgh. Ticks every box.

 

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

 

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.

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

(pity that article relies on the NHS website info.)

 

Woman who felt constantly exhausted and had flu-like symptoms diagnosed with lifelong condition
A brave reporter has shared her journey and diagnosis of myalgic encephalomyelitis (ME)
https://www.bristolpost.co.uk/news/real-life/woman-who-felt-constantly-exhausted-8606988

eta:
same article here
https://www.walesonline.co.uk/news/real-life/woman-who-felt-constantly-exhausted-27337332

 

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

 

Jessica Eccles is an NHS psychiatrist and an advisor to the Sussex ME Society: https://www.s4me.info/threads/scientist-joins-sussex-me-societys-advisory-team.5291/ see also Embracing Neurodivergency with Jessica Eccles, M.D. and Jessica A Eccles

 

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

https://www.impartialreporter.com/news/23743986.fermanagh-mum-sheds-light-impact-diagnosis/

 

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.

 

I had to search around a bit to find the fundraising page:
https://www.justgiving.com/page/damien-okane-me