Famous (and sort of famous) ME/CFS sufferers

[me/cfs 27931]

Yes - I find it hard to understand exactly what his diagnosis was /is. He seems to be able to exercise to some extent which is a big improvement from bed ridden. But no mention of me/cfs.
Mono induced fatigue combined with over training ?

Just saw a retrospective/interview of Robin Soderling on Tennis Channel. It mentioned mono and repeated attempts at a comeback but never fully recovering. No diagnosis other than mono was mentioned, which seemed odd.

"He retired early from professional tennis in 2015 due to health concerns."

If he has ME/CFS, it must be mild, as he apparently only seems to have issues during intense training (says he's 80 or 90%).

I see it's on Youtube.

 

[Graham]

Davie Provan, ex-Celtic: went down with it 30 years ago.

http://m.heraldscotland.com/news/14...never_get_criticised_by_their_former_players/

 

[AndyPR]

Davie Provan, ex-Celtic: went down with it 30 years ago.

http://m.heraldscotland.com/news/14...never_get_criticised_by_their_former_players/

Lol, the first article that features ME where there isn't a troll comment about ME - there are lots of troll comments on the Celtic/Rangers rivalry but none that I saw about ME.

 

[BurnA]

Lol, the first article that features ME where there isn't a troll comment about ME - there are lots of troll comments on the Celtic/Rangers rivalry but none that I saw about ME.

Interesting too that, like others, including Soderling, he specifically mentions training through his initial illness.

 

[Justin30]

This thread is very important as having auch celebrities come out and say it ruined my career or stiffled ot or whatever the world would take Notice.

The PACE trial and CFD have so erroneously misled the world in so that people wont openly admit they have a chronic debilitating illness with no treatment its just so messed up.

I hope once PACE and there misleading the globe gets spread to all nations these celebrities will come out of the woodwork and share the detriment of the disease on their lives.

I just am still in awe over this disease and how since now I heard Dr Hyde say it was described in the 1800's.

Some major political unjustice for way to long.
If Naviaux is right and replication becomes apparent then I hope that these athletic celbs say yeah I could barely do what I used to publically and didnt want to admit it because of the ridicule that would have taken place.

We need a ME poster child and soon....plus a commercial that shows the most severely ill.

 

[naiaraz]

Wow I didn't know about Flea! That's awful... he wrote some of the most amazing basslines in history.
I was also interested to see that Stuart Murdoch (of Belle & Sebastian) and Neil Codling (of Suede) are rumoured to have ME. If you don't know those bands, they are massively influential in the UK.

Stuart Murdoch on ME

 

[erin]

Tara Palmer Tomkinson died yesterday aged 45, did she have ME? They found the tumour in her pituitary gland and further tests revealed she was suffering from a rare auto-immune condition.

 

[BurnA]

Tara Palmer Tomkinson died yesterday aged 45, did she have ME? They found the tumour in her pituitary gland and further tests revealed she was suffering from a rare auto-immune condition.

If they found it in a test that rules out ME .

I did read she had a rare autoimmune disease with fatigue and joint pain.

 

[Tom Kindlon]

Rock-Star Led a Full Life of Resistance
Naomi Weisstein fought against the idea of women as objects in both the fields of psychology and rock ‘n roll

http://www.smithsonianmag.com/scien...r-led-multifaceted-life-resistance-180962814/

In March 1980, Weisstein was diagnosed with chronic fatigue syndrome. From 1983 to 2013, she was bedridden. “I do believe that the horrors at Buffalo played a role in making her sick in 1980,” says Lemisch. Still, Weisstein continued to work. After her diagnosis, she remained on journal editorial boards, kept her lab in Buffalo going for eight more years, and published 17 more articles, the last in 1992.

To Lemisch, the diagnosis of chronic fatigue syndrome opened up “a whole new world of bigotry.” Chronic fatigue syndrome was understudied and vastly misunderstood. The doctors “characterize[d] it as psychosomatic and ‘female hysteria,’ to use the old, sexist term,” Lemisch says. As her illness continued, it became clear to her husband that “the years of struggle within science now meant a struggle with the medical profession.”

 

[leela]

"In the weeks leading to Weisstein’s death in 2013, her doctor insisted she did not have cancer, despite her ongoing concern of vaginal bleeding. Though eventually diagnosed and admitted to Lenox Hill hospital for cancer, the doctor there failed to find a benign tumor near her stomach—even though she could point right to it. The tumor kept her from eating and drinking, but the doctor insisted that she just wasn’t trying. Weisstein died on March 26, 2015 of ovarian cancer—a death that was certainly hastened by the medical profession’s dismissal of a woman’s pain."

Oh, the irony. And in 2015, after a lifetime of fighting for women's rights.

 

[Jenny TipsforME]

Terrible

 

[Starsister]

This thread is very important as having auch celebrities come out and say it ruined my career or stiffled ot or whatever the world would take Notice.

The PACE trial and CFD have so erroneously misled the world in so that people wont openly admit they have a chronic debilitating illness with no treatment its just so messed up.

I hope once PACE and there misleading the globe gets spread to all nations these celebrities will come out of the woodwork and share the detriment of the disease on their lives.

I just am still in awe over this disease and how since now I heard Dr Hyde say it was described in the 1800's.

Some major political unjustice for way to long.
If Naviaux is right and replication becomes apparent then I hope that these athletic celbs say yeah I could barely do what I used to publically and didnt want to admit it because of the ridicule that would have taken place.

We need a ME poster child and soon....plus a commercial that shows the most severely ill.

And poster folks who show the other faces of ME..those of us who "look fine" to everyone but they don't see the pain, and the fatigue. I think the pics of folks bed bound is important but we also need the visibility of the invisible. And we need the words around, people have empathy for those with cancer, even when they look healthy, because people have heard the publicity and research about cancer, know people with cancer. Maybe we need ME Awareness buttons to wear, or a button saying "ask me about ME/CFS. The conversations have to start somewhere.

 

[*GG*]

Not ME/CFS, but Fibromyalgia. I have both, lots of us do!

GG

https://www.webmd.com/fibromyalgia/news/20170919/fibromyalgia-forces-lady-gaga-to-delay-tour

 

[WantedAlive]

Two-time World Champion motorcycle ace Casey Stoner diagnosed with ME/CFS late last year. Awarded young Australian of the Year, Australian Sport Hall of Fame. And now an OMF Australia / Emerge ambassador!

This guy's a legend. I used to race motorbikes at national championship level, its incredibly demanding physically and mentally, but at world championship level you need to be a super-athlete. It just goes to show even world champion athletes can fall victim to this disease. I feel so sorry for him and his young family.

On the positive side, a former twice world champion in a sport category that attracts big sponsorships and funding, maybe some of that spills over to research funding.

 

[Hipsman]

Casey Stoner retired in 2013, so he had issues since then, but only official diagnosis in 2019?

 

[WantedAlive]

Casey Stoner retired in 2013, so he had issues since then, but only official diagnosis in 2019?

I believe ME/CFS was suspected before 2019 as he suffered quite a setback in 2018, but as always patients go searching for any other possible diagnosis hoping like hell it's not ME!

Interestingly though, his troubles began in 2009 mid-season with a 'mystery illness' which was described as including inflammation of the stomach lining. That to me sounds like gastritis? That's exactly what I had in the years leading up to my ME/CFS onset between 2006 and 2015. Dyspepsia and recurring gastritis are the symptoms described in Dr Chia's ME/CFS enterovirus connection. Stoner was later diagnosed lactose intolerant, but one wonders about that conclusion after the initial anaemia diagnosis and fatigue he suffered.

 

[lauluce]

A quote from the book to entice you:

"Maybe it's not surprising, then, that the vast variety of symptoms that afflict mankind puzzle even the most erudite doctor. Over 50 % of the patients who troop into medical offices are sent home with the assurance that there's nothing really wrong. Even "well understood" illnesses are far less controllable by medical techniques than physicians are willing to admit. However,the medical profession deals with this by hiding its ignorance... What doctors are selling then, is not necessarily the ability to cure us, but the illusion of control. While medical practitioners make their living from the human hunger for control, they themselves are often frequently victims of that hunger... Research suggests that people tend to block out what they can't control and focus on what they can. The medical profession's eyes are frequently blinded by this phenomenon. "
This is in a chapter comparing doctors to priests and shamans of ancient cultures, interesting stuff.

That's an excellent insight on doctors! I guess I'll get that book

 

[Pyrrhus]

Two-time World Champion motorcycle ace Casey Stoner diagnosed with ME/CFS late last year. Awarded young Australian of the Year, Australian Sport Hall of Fame. And now an OMF Australia / Emerge ambassador!

Another news story about Casey:
MOTOGP CHAMP CASEY STONER REVEALS WORSENING FATIGUE ILLNESS IS ‘DESTROYING' HIM
https://www.visordown.com/news/general/motogp-champ-casey-stoner-reveals-worsening-fatigue-illness-‘destroying-him
Excerpt:

Casey Stoner says he is being 'destroyed' by a worsening chronic fatigue illness, revealing he is starting every day with only 50% of energy in him.

Double MotoGP World Champion Casey Stoner has revealed his ongoing battle against chronic fatigue syndrome has worsened over the course of the year, saying he is struggling to manage the ‘destroying’ illness.

 

[bensmith]

I was hoping a nba player would get it in from covid, like magic with aids. Really need some huge thing like that

Nnot lebron but this guy. Maybe not pem.

https://www.cbssports.com/nba/news/...-diagnosis-theres-no-timetable-on-his-return/

 

[Pyrrhus]

I was hoping a nba player would get it in from covid, like magic with aids.
...
https://www.cbssports.com/nba/news/...-diagnosis-theres-no-timetable-on-his-return/

Interesting link- here's an excerpt from that link:

Mo Bamba still dealing with COVID-19 symptoms despite June diagnosis: 'there's no timetable on his return'

Bamba, despite youth and good health, appears to be a COVID-19 long hauler.

Most NBA players diagnosed with COVID-19 have recovered relatively quickly. A good number dealt with the virus during the in-season hiatus but recovered soon enough to play in the Disney bubble. Mo Bamba of the Orlando Magic appears to be an exception. The third-year center picked No. 6 overall in the 2018 NBA Draft was diagnosed with the coronavirus on June 11. He tested negative in time to report to the NBA bubble but was not capable of playing there.

And now, almost six months later, Bamba is still dealing with symptoms. "There's no real timetable for him to be able to come back and fully participate," Magic coach Steve Clifford said, according to The Athletic's Josh Robbins. "I think that he'll be able to do some things that are more organizational and everything. But he's a ways away, and there's no timetable on his return." In June, Bamba told The Athletic that he lost his senses of smell and taste, was unusually fatigued and dealt with muscle soreness.