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

The next part is the misperception of people with this condition, and the association of it with laziness. If you know anything about me, I’m an extremely motivated person. There is SO much I want to do. I can’t express how heartbreaking it is to want to do so many things, and not have the energy to do what you love. I’ve loved martial arts all my life, I love swordsmanship with a huge passion, but my fatigue has made it practically impossible to keep pursuing these physical practices. Once, I wanted to train and enter tournaments and become as proficient as possible in historical swordsmanship, but with my current condition that’s impossible. When people see me on my couch all day and it’s easy to think I’m just being lazy. In reality it’s more like feeling trapped by your low energy levels.
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A friend of hers has announced that YouTuber PhysicsGirl has ME/CFS due to Covid.

An Update On Dianna's Health


Transcript:
Hi. Um, it's not Dianna, obviously. My name is Simone. Diana is one of my best friends and people often get the two of us mixed up, so maybe that's something.

As you might know, last year, Dianna got Covid and over the last couple of months she's slowly gotten worse to the point where her condition has become potentially life-threatening.

(Video montage of her life before becoming ill)
Dianna and her husband (?) dressed up fancy and walking outdoors, looking like a video to commemorate a wedding

Dianna walking through a public place
Dianna: How are you feeling?
Man off-camera: Good!
Dianna: I'm so excited

On the set of her videos
Dianna: Hey, I'm Dianna and you're watching Physics...PhysicsGirl. What do I do with my hands?!

On a zero-g flight, she's floating around
Dianna: My head! is not!...

In front of a series of bottles filled with red water connected by tubes, she and her friend yell when their experiment works? fails?

A short shot of her walking in a forest

An outtake from a video
Dianna: Make a cl... (bursts out laughing)

More shots from her wedding

The screen goes black and says "Today, February, 2023." The next shots are moments from her post-illness life.

Kyle is calling 911, in the kitchen with a phone in his hand
Operator: ...emergency, what is your emergency?
Kyle: My wife, uhh, needs to go to the emergency room.

Dianna is now lying in a dark bedroom as she holds a whispering conversation with her family. It's unclear whether this happened while waiting for the ambulance to arrive, or whether it's from another time.
Kyle: You're handling everything so well. I just need you to relax.
Dianna's Mom: Stay calm.
Dianna: It's hard to stay calm. I takes over my mind.
Dianna's mom (?): I have you, OK?
Dianna: I can't think anymore...
Kyle (?): Shhh.
Dianna: ...I can't move anymore.
Kyle (?): Stay here, stay calm.

The paramedics arrive to take her to the hospital.

Simone begins narrating a slideshow of photos depicting scenes from Dianna's current life, interspersed with shots of Simone and content she posted online.
Simone: Dianna's health has spiraled down to the point where she can barely move, she can't feed herself, and in the past week, she has been to the ER twice. Dianna has long Covid, and that has triggered something called ME/CFS. It's a chronic fatigue syndrome that is extremely debilitating and Kyle (her husband) has become her full-time caretaker.

Her mom visits and helps as much as she can, but her condition keeps her limited from seeing any other friends or family right now because it's too exhausting for her. So, lately, the way her other friends and I have been staying in touch with her is that we send little updates about our day to her husband Kyle and then he reads them for her at night because she hasn't been well enough to read text messages by herself. So, yeah, it's bad. And it looks likes the road to recovery is gonna be way longer than any of us ever expected. And we have all just been scrambling to find ways to help in this kind of impossible situation.

And I know that there are a lot of you who have followed her for a long time and who have been looking for ways to help, too. And Dianna has a Patreon page. And I also know that when I went through health problems of my own, Patreon was the only thing that kept me afloat during that time. Levi, who is her editor and videographer is still posting some stuff on there including some health updates. And I just wanna clarify that this is not something that Dianna has asked me to do. I've talked to her friends and family about it and honestly, I am excited for a time when maybe she's well enough to maybe be upset with me for posting this. I'm just trying to help a friend and Patreon is something I know helped me a tremendous amount when I was ill. So, if you've been looking for a way to help, I think Patreon is your best options.

I know that she really wishes that she could be here and I know that a lot of you are rooting for her, and we are too. But right now, she just has to focus on getting better. She, hopefully, is gonna be treated at a long Covid specialist clinic soon. And they're constantly developing new treatment methods, so we're all staying very hopeful. So, yeah, um, that's the update. Happy physicsing? I think that's it. Okay, bye.

The photos and videos they showed while Simone talked:
  • Shots of her being taken to the hospital
  • Kyle talking to her in the hospital. She's wearing headphones and an eye mask.
  • Dianna lying in bed wearing headphones and an eye mask
  • Kyle and another friend/relative visiting her in the hospital
  • Kyle reading on the computer
  • Kyle cooking for her.
  • Dianna's mom talking to her in bed
  • Kyle helping Dianna roll over in bed
  • Kyle using a massage gun on her leg
  • Kyle putting the food he cooked into a blender to make a smoothie, then giving it to her
  • One of her friends/relatives crying while another consoles him
  • Dianna's mom (?) visiting her in bed and handing her a smoothie
  • Posts Levi (her cameraman) made on her Patreon
  • When Simone says, "I really wish she could be here," there's photos of Dianna doing fun stuff and smiling.
  • Diana in bed getting an IV infusion
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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/
It is estimated that Hacker News attracts more than 3 million views per day and greater than 300,000 daily users. Simply put, a lot of people read it and getting to the front page of Hacker News will often mean many thousands of users to your website or product.
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https://news.ycombinator.com/item?id=35087361

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

 
Wits_End said:
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.
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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

The tendency for people to be optimistic about future events, especially those seen as following from their own plans and actions. Although optimism is no doubt a stimulus to enterprise, it has obvious dangers: these include increased risk taking, failure to estimate probabilities accurately, and inadequate contingency planning. In drawing up plans, schedules, and budgets there is a demonstrated tendency for managers to underestimate costs and duration and to overestimate benefits. This being so, there is now an explicit requirement for those managing government projects in the UK to include an adjustment for optimism bias.
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Why not other 'literature' and does/will this include 'business areas' such as NHS, health, mental health and the like?
 
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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).
 
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your tweet linkisnt working Ariel?
Ariel said:
What are the options about what is going on here?
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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.
 
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/
 
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