Well-known, famous people with ME/CFS (public thread)

Stuart Murdoch, musician from the group Belle and Sebastian, is sharing his 'Tracks of my Years' on the Ken Bruce show on BBC radio 2 through this week.
Link to the compilation programme, 57mins, available for 26 days from date of posting.

https://www.bbc.co.uk/sounds/play/m001hmnl

He talks briefly about his ME and the seven years when he was at his worst between 30 and 33 mins, and at 54 mins when he talks about having to cancel tour dates last year because of his ME.

 

A YouTuber with over 1.5 Million subscribers has posted that he has ME/CFS. You can see his post on the community tab. He linked to my short explainer video.

https://youtube.com/@shadiversity

 

Snippet from his community post https://www.youtube.com/post/Ugkx95jdfHoSKUcwsDPq6JyjXUhmxTfh7-zD

 

A friend of hers has announced that YouTuber PhysicsGirl has ME/CFS due to Covid.

An Update On Dianna's Health

https://www.youtube.com/watch?v=vydgkCCXbTA

Transcript:

 

Currently this story is on the front page of Hacker News (which gets a lot of "important" eyeballs - including the disruptors of Silicon Valley etc). It may not stay prominent for long, so I took the opportunity to jump in with a quick comment to fly the flag.

From https://www.workflow86.com/front-page-of-hacker-news/

https://news.ycombinator.com/item?id=35087361

ETA: It didn't last long on the front page unfortunately.

 

Some good publicity:
https://twitter.com/user/status/1633866785740165120

 

The YouTube video above posted by @RedFox has been forwarded to me from a physics grad as it came up in his feed. So sad for Dianna and family. A brief and impactful video for very severe ME. (Thinking ahead to APPG on March 21?)

 

When I skimmed this, it just seemed to be old material

MUSIC
'Trying To Kill M.E.': The Streets song Mike Skinner wrote about his battle with chronic fatigue
Joe Taysom
MON 13TH MAR 2023 07.00 GMT

• 
  

When Mike Skinner ended The Streets in 2011, it seemed to be a decision out of the blue. At the time, he was only 32, and his career was still in its infancy. Yet, for various reasons, Skinner felt it was time to retire the highly-successful moniker and step off the conveyor belt.

A few years prior, Skinner was flourishing professionally, but his body couldn’t cope with the demands of carrying The Streets on his back and running his own record label. The stresses of life became too intense, and the musician stopped working, which made him reevaluate what was truly important to him.

https://faroutmagazine.co.uk/the-streets-mike-skinner-chronic-fatigue/

 

(didn't know where to put this)

https://twitter.com/user/status/1636296772153757696

 

Hugely depressing set of answers. Loads of people mainly talking through their respective hats. Maybe someone should tell her to come here. Or maybe not.

 

She did use the eponymous filter of 'any positive stories' or suggestions. Who knows how intended that was as a filter, but I can imagine it being a shiny keys phrase to that type.

The usual issue of realistic optimism being confused with toxic positivity when they are factual opposites?

On the other hand a quick google did mean I found the following 'new term' [optimism bias] is actually somewhat in official in business literature use: https://www.oxfordreference.com/dis...8;jsessionid=CC9BD5A7F9007C33426EA15F79822248

Why not other 'literature' and does/will this include 'business areas' such as NHS, health, mental health and the like?

 

I'm sorry if she has a friend with ME, but am deeply cynical about this post.
Replies can be cherry picked as has happened with others in the past.

 

We have an ongoing thread about how to best manage the risk of bad-faith members exploiting S4ME content for horrid purposes.

I’ll add “not inviting Isabel Oakeshott” to the list of quick win ideas.

 

yeah, i find her involvement concerning

 

What are the options about what is going on here?

 

https://twitter.com/user/status/1637267936825217024


https://www.hellomagazine.com/healt...-daughter-betty-update-managing-fibromyalgia/

"I was given the great advice by the Perrin specialists I'm seeing that however much I feel like I can do in a day, don't do more than half of that. So if I feel like I think I could manage a 30 minute trip to the park I won't actually do more than a 15 minute trip out, and I just apply that to like everything."

"There is no known cure, but treatments like medicine including antidepressants and painkillers, talking therapy including CBT and counselling, as well as lifestyle changes including exercise programmes and relaxation techniques, may help alleviate some of the symptoms." (from article)

Edit: I guess the user deleted the tweet. It's about Jonathan Ross's daughter Betty's illness (ME/Fibro) and the linked article is above).

 

your tweet linkisnt working Ariel?

I dont know. Its probably not helpful for me to speculate.

I'm not trying to suggest she is being anything other than genuine in her concern. It just worries me the type of responses she'll get & from whom, and the platform she has.

I hope her friend gets some good support & it ends up being a self-limiting post viral problem & they recover. rather than full blown long term ME.

 

https://twitter.com/user/status/1675906692180066304

 

Martine McCutcheon still affected by illness.

"In her caption, Martine spoke candidly about her struggles with chronic fatigue syndrome and fibromyalgia – a condition which causes widespread pain and extreme tiredness."

"She penned: "What A GREAT Gatsby Night to remember! I haven't been out for a night like this in a long, LONG time due to many reasons - But mainly managing my CFS & Fibro.

"I was a bit nervous but I knew I was having a 'Good couple of days' and that I would pace it so I could have the best night! It was SO good for the soul! As you know I LOVE an outfit and I adore getting all dressed up with my music on!""

https://www.hellomagazine.com/healt...6846/martine-mccutcheon-candid-health-update/