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

Kitty said:
Oh, absolutely. I only meant celebrities who don't have any vested interest, such as Martine McCutcheon and Marina Diamandis. Sometimes they may post (or be quoted as saying, not necessarily accurately) things that are slightly frustrating, but they're not actively working against fellow patients or trying to line their own pockets by promoting discredited theories. They're just trying to muddle a way through it, like the rest of us.
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Most of us have probably minimised and tried to sound positive and offered false hope of our imminent recovery when explaining our illness to customers and bosses. The relationship that minor slebs have with their fans is similar.
 
Corey Feldman splits from wife Courtney Anne after her battle with chronic fatigue took a toll marriage
https://www.dailymail.co.uk/tvshowb...e-chronic-fatigue-took-toll-relationship.html

eta:
Mitchell said in her statement that she has been struggling with “health issues” and chronic fatigue syndrome for two years.

“I’ve struggled for two years with health issues old and new; and this has taken a massive toll on me and my family,” she said. “I always try to keep positive and a light heart regardless of what I am going through physically, but sadly it has now crossed a threshold where I can no longer continue on with the tour.”

She added: “It’s been a long journey of dealing with my own chronic fatigue syndrome which makes it difficult to keep up with the high energy of touring and travelling from place to place… However, I do wish ‘My Love, Husband, & Friend’, and the bandmates a happy tour and the very best out there. I know they will be amazing as they put on a great show.”
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https://www.independent.co.uk/life-...ne-mitchell-announce-separation-b2389433.html
 
https://www.dailymail.co.uk/tvshowb...-McCutcheon-hospitalised-chronic-illness.html

She penned: 'Mallorca life. Love it. Had a big flare up of my CFS lately and the travel was tough but waking up in the sunshine, feeling the hot heat soothe your aches and pains along with a warm gentle warm breeze is just heaven!'

Later that day she told her followers that all the travelling and walking had made her legs feel like she was lifting a ton of weights.

She added that she was 'shuffling along slowly' taking her time time and that swimming in the pool was relieving for her joints and muscles.
 
I read Martine McCutcheon’s Instagram post and was fairly happy with it. Seems to get across she has a debilitating chronic illness and calls for people around patients to read up about it. I thought it was a lot better than a lot of celebrity coverage.
 
Martine McCutcheon's article in the Daily Express is remarkable and significantly different to her articles in the other papers. At the end of the Express article it says:
"This article was crafted with the help of AI tools, which speed up http://Express.co.uk ’s editorial research. A news editor reviewed this content before it was published. You can report any errors to readercomplaints@reachplc.com."

Firstly, it lists PEM as a symptom which I don't think gets a mention in the other, nearly identical, articles in Hello! OK! Daily Mirror, Liverpool Echo and many others. It goes on to describe GET: "In the past, graded exercise therapy (GET) was commonly used to manage CFS by gradually introducing physical activity into a patient's routine. However, this approach was discontinued as it was found to worsen the illness and even result in fatalities. The NHS now advises against GET for individuals with ME/CFS."

I don't remember seeing mention of "GET resulting in fatalities" before in any popular 'celebrity' press articles like this before. Most of which will have emanated, I guess, from the Science Media Centre.

https://www.express.co.uk/life-styl...tigue-syndrome-symptoms-ME-Martine-McCutcheon
 
not sure how well known this chap is.

Steve, Founder of Hardtail Party, Has Some Bad News
If you know Hardtail Party, you know Steve Hume. He embodies the unpretentious spirit of the YouTube channel he founded in early 2019. He’ll speak with the exact same enthusiasm about the titanium Binary Maniak 29+ frame he helped design, as he will about the updates on the Trek Roscoe or his daughter’s Woom balance bike. But he just posted a video on his channel that, despite somehow showcasing that same unflappable positivity, is very very different…

Steve has been diagnosed with a rare neurological disorder called myalgic encephalomyelitis (ME/CFS). In his video, he speaks with remarkable candor about what the disease is, how he came to learn he had it, and how he expects to cope with it. But in true Steve fashion, his main motivation for making the video seemed to be to educate the viewer. To explain how to look out for the disease, and to listen to their body if they think something is wrong. One pointed omission from the video is any sort of Gofundme link.
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Steve, Founder of Hardtail Party, Has Some Bad News | The Radavist | A group of individuals who share a love of cycling and the outdoors.
 
Former international runner taking on first half marathon since ME diagnosis
A CAERPHILLY woman is set to take on the Cardiff Half Marathon - in one of her first races since being diagnosed with Chronic Fatigue Syndrome.

Megan Bowen, from Caerphilly, will be taking part alongside more than 27,500 runners in the 20th anniversary of the race, which started in 2003.

Ms Bowen, 23, previously represented Wales at an international level and set a Cardiff Parkrun record in her age category at 18 minutes 32 seconds, before having to stop running due to chronic fatigue.

Now, she is back on the road and raising money for NSPCC along the way.

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness.

ME/CFS can affect anyone, including children. It's more common in women and tends to develop between your mid-20s and mid-40s.

Ms Bowen said: “I have to keep my heart rate low when training.
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https://www.southwalesargus.co.uk/sport/23746035.megan-bowen-taking-cardiff-half-marathon-nspcc/
doesn't say when she was diagnosed
 
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