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

Confusing article. It seems someone who recovered from M.E. is trying to get people with all sorts of disabilities, including M.E. to exercise??

Disabled adults urged to have a go at sports day with a difference - Belfast Telegraph

A charity is encouraging people with a disability to come along to its free sports day in Enniskillen on Sunday.

Shelley Cowan set up JustUs in 2019 to help boost accessibility and inclusivity for the disabled.

As a teenager she was left bed-bound for 12 years by chronic fatigue syndrome (ME).

Shelley was gradually able to use a wheelchair, which she was in for another decade.

With the help of the Buddy Bear school in Dungannon, which teaches children with cerebral palsy, she managed to walk again. In April Shelley set herself the challenge of climbing the Cuilcagh boardwalk trail in Fermanagh in aid of JustUs.

Now, with the help of the National Lottery’s Community Fund, the charity is hosting a fully inclusive sports day at Fermanagh Lakeland Forum.

She said: “It’s for any adult with any type of disability to come along to, whether that be physical or sensory disabilities, learning difficulties, anybody with multiple sclerosis, ME, dementia, Down’s syndrome...

“We will have canoeing, accessible bikes, accessible walks, badminton, pickleball and all the outdoor games you can think of. Also Connect 4, Jenga, limbo, golf putting sessions, tin can alley, target shooting, and small ten-pin bowling for those with mobility issues, or people who can’t lift heavy things.”
​

https://m.belfasttelegraph.co.uk/ne...-sports-day-with-a-difference/a461881843.html

 

Lord help us.

 

I put a tweet tagging the journalist in reply to the article.

Edit: I’ve also sent them an email.

 

Urghhh

Text of Answer:
Hi Yann - Shelley herself has had ME for many, many years and the day is full of something for everybody, including smaller outdoor games and table activities. Emergency services will also be on hand. JustUs are simply trying to provide an inclusive and accessible day for all

 

https://twitter.com/user/status/1807000454255026389





Tweet response from Hope for ME & Fibro NI:

"Yes-well intentioned event but due to high number of concerns, the charity has issued the following information and caution for people with #ME and #Long Covid.
@WorldPhysio1951
A follow up on the scientific evidence would be appreciated
@niamh_journo please."

.

 

That word *inclusive* again. Claiming that encouraging ME sufferers to exercise is about disability inclusivity. This is not the first time. So many ways ME sufferers are excluded, socially, medically, but our being included only mentioned when encouraging us to exercise, or engage in snake oil programs. Sheesh. It's like disability rights/inclusivity are now being used as a weapon to beat us with. Like inclusive is a magic word that makes the user of the word *in the right*, and the patients who point out the hazards of 'inclusive' exercise for #pwme *in the wrong*.




https://twitter.com/user/status/1806757834086129934




Tweet content:
Niamh Journo:
"Hi Yann - Shelley herself has had ME for many, many years and the day is full of something for everybody, including smaller outdoor games and table activities. Emergency services will also be on hand. JustUs are simply trying to provide an inclusive and accessible day for all"

.

 

Will emergency services be on hand in participants with ME’s own homes the next day or following weeks when PEM kicks in or months later if individuals take on upping their activity levels longer term leading to longer term deterioration?

It could be argued, with some justification, that it is up to individuals with ME to decide what they can or can’t do on the day, but there is so much societal pressure to exercise and suggesting the organisers fully understand because one of them has ME just adds to that pressure. Because one person with ME can do something does not mean that everyone with ME should be able to do the same.

 

I sent her a follow up email highlighting the tweet from NI association.

Here is her email if anyone wants to add on n.campbell@belfasttelegraph.co.uk

 

Yes. But in this case it’s just basic decency and journalism integrity to put a warning about exercising with ME in the article.

 

Not sure what the best thread for this is but Wes Streeting was nominated as UK Health Secretary. Do we know how he stands on ME and Long Covid? From what I read he seems to be on the centrist side of labour, the Guardian said he “had a reputation for ruthlessness” whatever that means.

 

yes, i'm afraid some of the worst anti-advocates for people with ME particularly in its more severe forms, are other people with an ME dx, especially if they are at the "milder" end or don't experience PEM.

In addition, if it were 'inclusive for all'.... it would have adjustments for sensory processing difficulties.... will they have periods of time where they ban cheering or noise of any kind, including lots of people talking and the sound of an ice cream van's engine... Say for example a 'silent hour' - where everybody has to shut up, all machines will be turned off and everyone made to be quiet... so that i can attend and have a go at a bit of golf putting? Otherwise they arent making it accessible to all, are they?! Especially people with ME!

 

interestingly Morrisons supermarket to have an hour like that, they call it "autistic hour', & it is on saturday morning between 9-10 am... before the rush starts i guess. Its an excellent thing

Its no good for me though, i tried it & there were lots of autistic children there with parents, being very noisy. Its yrs since i was able to go supermarket shopping, more than about once a yr, but i found the quietest time to be just before closing & just put visor, dark glasses & ear plugs
When i metioned a 'silent hour' it was really in response to the event organisers defence that its no problem to target their marketing of a sports/exercise event to PwME becuase they wanting to be 'inclusive of all', as not really holding up

 

Long COVID & Chronic Fatigue: The Similarities are Uncanny

"An estimated two million people in England and Scotland were experiencing symptoms of long COVID as of March 2024, according to the Office for National Statistics. Of these, 1.5 million said the condition was adversely affecting their day-to-day activities.

As more research emerges about long COVID, some experts are noticing that its trigger factors, symptoms, and causative mechanisms overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

https://www.medscape.co.uk/viewarti...fatigue-similarities-are-uncanny-2024a1000d17

 

The title of this article now includes "syndrome"; "Long COVID & Chronic Fatigue Syndrome: The Similarities are Uncanny".

 

Sajid Javid: Labour must deliver on ME as patients suffer without a cure

Sir Sajid Javid was the first senior minister to challenge the medical attitude that the disease was only psychological, when he was health secretary in 2021-2022.

The new Labour government must urgently implement a long-delayed strategy to improve the treatment and understanding of the debilitating illness myalgic encephalomyelitis (ME), Sir Sajid Javid has said.

The former health secretary warned that ME patients, who suffer severe symptoms and are often faced with sceptical attitudes from the medical profession, have been “left behind for too long”.

Javid called on Labour to finish the work he began as health secretary in 2021-22 to develop a plan for patient care and new research into the condition, which is also known as chronic fatigue syndrome (CFS) and has no known cure, and affects at least 250,000 people in Britain.

LINK

Also linked here:
Maeve Boothby O'Neill - articles about her life, death and inquest

 

Looks like it's been changed again, unfortunately to "Long COVID & ME/CSF: The Similarities are Uncanny"