Famous (and sort of famous) ME/CFS sufferers

[blackbird]

I've been following Mark Hurst on twitter and his posterous photo blog (@HurstAkaMiwurdz is his twitter, with link to posterous from there).

I looked him up on imdb, and there isn't much there. I'm sure he was TV a lot more than that a few years back (in the UK). He was a comedian and presenter. His latest posterous entry was interesting: Mark Hurst on Posterous

I first heard of ME years ago when Clare Francis was on TV having disappeared for a while. I guess that's why (when I was first realising I may be a sufferer) I was confused by some people considering it all in the mind, when that was as far from the impression she gave (round the world yachting is hardly the preserve of those with a lazy streak is it?)
I'm still finding my feet and trying to pick a way through the mass of information, but a couple of times I've seen mention of AfME (Clare Francis is president) where the gist is that they think it's all in the mind? It would seem odd, and from a quick look at their website, doesn't look to be the case.
I guess the downside of the web is the incorrect, and purposefully wrong information and have to figure out what's really what.

Anyway, hadn't ever heard about Flea being a sufferer either, and had a search, which turned these up:

Half Awake in the Wrong Pyjamas - blog

musicbizadvice site

though they pretty much give the same names as already mentioned with a couple of extras.

 

[liverock]

Celebrities who have Chronic Fatigue Syndrome are legendary film director Blake Edwards; musicians Randy Newman, Keith Jarrett and Dennis DeYoung; actors Cher,Morgan Fairchild, James Garner, Alana Stewart and Kathy Crosby; and philsopher Ken Wilbur. And of course, author Laura Hillenbrand and soccer player, Michelle Akers.

source: CFIDS Association --- booklet "Defining Moments - 20 Years of Making CFS History" --- page 42

(Dont know whether this list is up to date.)

 

[margib]

Thanks for posting my blog, Blackbird! I guess my next question would be, assuming none of these celebrities is too bedridden, who can step up??? We need someone like Jenny McCarthy is to Autism. It seems we can't count on our elected officials, which makes it even more urgent!

 

[annunziata]

Margib, I am not sure about all of them -- I don't think it's ever been clear that Cher has (or had) CFS. I believe she thought she did. Laura Hillenbrand remains terribly ill and mostly homebound. If you haven't read her account, A Sudden Illness, published in the New Yorker back in 2003, I highly recommend it. She's a very intelligent, erudite woman (well, obviously!). When she has given interviews, the reporters often comment that she looks too damn good/well and sometimes imply that she's too cheerful and pleasant (I've always esp. hated the lose/lose aspects of this illness). She just commented on the WPI discovery on NPR.

I remember seeing Alana Stewart on Larry King about a hundred years ago, blathering about 'psychological components'. I wouldn't look to her for help.

 

[Jerry S]

Keith Jarrett and CFS

For a long while after the mysterious illness known as Chronic Fatigue Syndrome (CFS) first laid waste to his system during a fall '96 tour of Italy, Jarrett didn't know if he would ever perform again. He was virtually housebound for two years, struggling with the stultifying fatigue – chief among several symptoms he didn't particularly want to discuss – and the dizziness that still prevents him from reading music.

The National Post, 20 November 1999

For a collection of interviews and other material about Keith Jarrett and CFS see this link.

Ah, finally. This is the quote I was looking for.

A friend said to me, 'Is there anything I can do for you, like wash your car or something?' And I said, 'Yeah -- you can wash my car!' So I sat in a chair and watched him wash my car, and that was a major event in my life.''

It's from a November 8, 1998 article in the New York Times. I think it would be great in a campaign about how you can help someone with ME/CFS.

 

[shiso]

Jarrett links - thanks

Thanks Jerry for the Kieth Jarrett links - I had seen/heard the NPR Terri Gross segment before but not some of the other articles.

I've also been a fan for a long time, ever since a friend gave me a CD of The Paris Concert as a present during college. Over the years I bought several of his albums, including "The Melody at Night, With You" without knowing anything about his illness. I thought it was beautiful at the time. When I got sick last year was the first time I learned that he had had CFS and that "Melody" was recorded when he was still really sick.

I like that he does a good job of describing what it feels like to have this in his interviews. I also find his story to be encouraging in that he's someone I admire and believe and it seems he got through the worst of it - whether due to the antibiotics or luck or both - going from housebound for years to being able to travel and perform again. I have the NPR interview in my iTunes and listen to it on low days when I need a dose of hope.

 

[_Kim_]

Ah, finally. This is the quote I was looking for.

It's from a November 8, 1998 article in the New York Times. I think it would be great in a campaign about how you can help someone with ME/CFS.

Thanks Jerry. That was a good article.

"Still, it is rare for a superstar simply to vanish altogether, and Mr. Jarrett's disappearance set rumor mongers to working overtime. ''There's been such a mystery surrounding what I have,'' he said, ''that it's led to all this speculation -- does he have AIDS? What kind of cancer does he have? So far as I know, my condition isn't life-threatening, but at the same time, it's not like a singer saying, 'Oh, I have a sore throat today, I don't feel like singing!' If I were to invent the most mind-boggling disease imaginable, I couldn't do better than this.''

 

[_Kim_]

Former Colt David Lee disabled with CFS

November 19, 2009

Catching Up With ... former Colt David Lee in The Baltimore Sun

Now 66, Lee lives in Bossier City, La., near his hometown of Shreveport, with Sandra, his wife of 45 years. After football, he worked there for General Motors as a floor supervisor in a Chevy Blazer plant until disabled at age 51 by chronic fatigue syndrome.

"Its a flu-like tiredness, kind of hard to explain," Lee said of the debilitating illness that affects more than one million Americans. "My day starts around noon. If I walk for 30 minutes, Im (exhausted) for two days.

"I get tired just standing on my feet. So far this year, Ive had three days where Ive actually felt good."

 

[leelaplay]

ME/CFS has now made the Sports Section

Hi Kim

Love that you're catching everything, it seems, that comes up on ME/CFS.

This may be one of my favourite media coverages to date. It's in the sports section. It's not all about ME/CFS and trying to dispel myths or get the facts out. It takes it for granted. The 3 paragraphs Kim highlighted are in the middle of the article, the rest talking about his football career.

This treating ME as a fact, a part of everyday life that of course everyone knows about, is so hopeful to me. And for a football star to be doing so makes it even stronger somehow.

islandfinn

ps did you post it to the media no discussion thread as well?

 

[leelaplay]

Crossword Creater an ME/CFSer

Tom Kindlon sent this to CO-CURE

Keeping the crosswords puzzling

It's similar to the football star story. ME/CFS is just a bit of info in the article, mentioned as a normal part of life that everyone knows about.

I find these types of stories very encouraging. To me it implies that we're starting to be part of mainstream awareness.

Talk about your late bloomer: one of Canada's foremost crossword writers
only started doing crossword puzzles in her 50s.

........
But around the time she got into puzzles, chronic fatigue syndrome made
working full-time a challenge. So she moved out to Victoria in 1997 to
become a freelance writer.
-------
Job title: Crossword creator

Salary: "It's my sole source of income."

Education/training: A knowledge of puzzles and editing skills

Best Part of the Job: "I like working with words and I like the fact that
people enjoy doing my crosswords."

Worst Part of the Job: Sometimes it's tedious. The pressure of deadlines."

islandfinn

 

[Jerry S]

Creating crosswords is tough

My hat's off to anyone who can do it, with or without ME/CFS. See the 2006 documentary, "Wordplay," about Will Shortz and the NY Times crosswords, which shows what constructors go through. It's available through Netflix.

Thanks for posting this, Finn!

 

[starryeyes]

WordPlay was a good movie. I still think about that movie a lot and I saw it a few years ago now.

It's nice to see CFS mentioned like any other disease would be in this article. Yay.

 

[blackbird]

Thanks for posting my blog, Blackbird! I guess my next question would be, assuming none of these celebrities is too bedridden, who can step up??? We need someone like Jenny McCarthy is to Autism. It seems we can't count on our elected officials, which makes it even more urgent!

No problem. Given the amount of writers here, I guess the odds were pretty good there'd be a match.

And in case anyone wants to check his twitter/blog, @HurstAkaMiwurdz is now @HurstAKA and his blog: http://hurstm.posterous.com/

 

[talkingfox]

Celebrities who have Chronic Fatigue Syndrome are legendary film director Blake Edwards; musicians Randy Newman, Keith Jarrett and Dennis DeYoung; actors Cher,Morgan Fairchild, James Garner, Alana Stewart and Kathy Crosby; and philsopher Ken Wilbur. And of course, author Laura Hillenbrand and soccer player, Michelle Akers.

source: CFIDS Association --- booklet "Defining Moments - 20 Years of Making CFS History" --- page 42

(Dont know whether this list is up to date.)

Oh my. If someone could get James Garner to come forward it would have the same effect that Rock Hudson did for HIV I think, perhaps even more so...and Rock going public made an enormous difference.

 

[starryeyes]

Denis DeYoung was the amazing original singer for Styx. There are lots of articles about him and he's in Wikipedia, they all say that he was struck down by a "chronic fatigue syndrome - like" illness. He did get well again and is back to making music but not with the band Styx.

I saw a Bio on DeYoung on MTV in the '90s. He definitely developed CFS. There is no doubt in my mind. His bandmates were rude too. When they were interviewed they said, "When all of the doctors say nothing's wrong, then what are we supposed to think?" I'm paraphrasing but it was something like that. Then one said, "Some guys just can't handle being on the road. Some just need to be at home." and they all agreed.

DeYoung's wife said, "He watches all these bands using new technology on tv and he gets all these ideas and says, "When I get back on the road we can do this or we can do that! I have all these great ideas," and she said she has to remind him that he's too ill. But happily, he's doing better and is back out there making music again.

I read an article about Cher in the early '90s. She came down with EBV the same year I did, 1985. She described the exact same symptoms I had. She was able to recover enough to work out and get back into performing within a year and I was able to get back to working out and continuing college within a year.

I remember her saying, "Now I need people like my mom to call me and tell me to go to the gym." and I know just what she means. Back then I could push myself but it took a whole lot to do it. The fatigue was just intense.

Now I'm way worse but she's still better. I wish she would campaign for us or that one of these rock stars would at least write a song about CFS.

Flea definitely has it too. I've read about him as well. You know how you just know, because their experience is so parallel to your own?

I wish the Rock Stars would get out there and be real stars for us.

Dennis DeYoung with Styx: http://www.youtube.com/watch?v=3cShYbLkhBc

Thank you very much, Mr. Robato.

My favorite Cher song: Gypsies, Tramps & Thieves: http://www.youtube.com/watch?v=TOSZwEwl_1Q

One of my favorite Red Hot Chili Peppers songs, Flea's their bass player [thank you Blackbird] : http://www.youtube.com/watch?v=sFMLARtqxCY

 

[Tom]

And in case anyone wants to check his twitter/blog, @HurstAkaMiwurdz is now @HurstAKA and his blog: http://hurstm.posterous.com/[/QUOTE]

Thanks for the link---just enjoyed a good read--good start to the day.

 

[Dr. Yes]

Hey Teej,

Where did you read about Flea's case? I only heard about him recently. He's one guy most people would have a hard time picturing bedridden... I used to see RHCP when I was in high school/ college and wondered how he didn't get whiplash. He was always so high-energy...

Btw, he was their bassist!

 

[thefreeprisoner]

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.

 

[CBS]

Here's a post by the editor of Music Biz Advice, Randi Reed, listing many celebs with CFS. This was written in Nov, 2006: http://www.musicbizadvice.com/Press Release Randi Reed CFID CFS Announcement 11082006.htm

 

[OverTheHills]

You can cross Yvette Cooper off the list I think.

The Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions in the UK, (or she was until September last year) recovered from M.E. after a couple of years off work. I'm afraid that although she lets this be known publicly(which is good), she has never made any attempt to stand up for patients rights or to improve the dreadful process of claiming benefits in the UK where a large % of ME/CFS sufferers are turned down, then having to drag their foggy tired selves through appeals processes . The new process is apparently even worse.

She should be a great champion, she's is certainly well placed to help but unfortunately she seems to be completely lacking in compassion.