Famous (and sort of famous) ME/CFS sufferers

[margib]

Where have I been? Does anyone else know about Flea, Keith Jarrett, & Howard Bloom having ME??? Certainly if Howard Bloom had it, we would have had discourse from him by now (for my fellow nerdy English majors?)

 

[hvs]

Keith Jarrett's The Melody at Night with You was composed while he had CFS. It's gorgeous.

Do you mean Harold Bloom? That would be...interesting.

 

[anne]

I Googled it! Howard Bloom was a music publicist turned writer and scientist.

 

[sarahg]

Howard Bloom does have it. I know this from a former nerdy english major. The guy was apparently one of his favorite writers, and put out a few books a year, and then dropped off the face of the earth for like 6 years. So said nerdy english major had to find out WHY! and when he finally put out a book (that had taken him years to write) he went public with having ME. Which in turn, he had to find out everything about as to understand why howard bloom had dropped off the earth. So when I moved back to PA I had at least on friend who already understood what was going on thanks to howard bloom! The new book is called the Lucifer Principle, and I am slowly reading it as we speak, as my friend left it for me to read. I don't really agree with all of it, it's basically an analysis of how evil is an evolutionary part of human and animal nature that has shaped our history and consciousness. You can tell he's got CFS/ME cause he goes off on rants about doctors with god complexes who have no idea what they are talking about. Talks a lot about the immune system, cortisol and endocrine system in ways that show he's had to do a lot of research about his own disease. He's supposedly active in the Mass. CFIDS association.

 

[sarahg]

I forgot to mention that the whole book really could be his own little allegory for how this disease has been treated by doctors, the government and society. I wonder if it was borne out of him wondering why all the people he was dealing with were so darn evil. But he never mentions it directly, although he refers to diseases whose causes have not yet been found and how stupid people are for assuming they must not be real fairly often.

 

[margib]

well he's come a long way from writing about the history of english lit. sounds like something i'd enjoy. how weird to be re-reading him in this context. now who went to lalapalooza back in the day & saw flea???? wonder if it's true about him now?

 

[anne]

Margib--I think you're thinking of Harold Bloom, who writes about English lit? He wrote The Western Canon and Shakespeare: the Invention of the Human. Howard Bloom--who I had never heard of before--is also a writer now, and that book sounds fascinating, Sarah. Thank you.

 

[margib]

thank you, anne. knowing it's not written by harold makes it even more appealing!

 

[kamina]

Never heard of any of these folks tbh. The only famous people I know who have/had ME/CFS is Cher and the author of Sea Bisquit.

I don't wish this illness on anyone... but at the same time I can't help fantisize what it would be like if more famous people had the illness... especially policy makers or scientists... or the president of the United States... Sorry, back off to day dreaming...

 

[sarahg]

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.

 

[margib]

love it. so true! get me a shaman...

 

[Alice Band]

I remember Keith Jarrett saying something that really struck a chord with me.

It was along the lines of "never noticed before that the driveway up to my house was on a slight hill".

He has given lots of interviews and also spoken about treatment.

 

[leelaplay]

I remember Keith Jarrett saying something that really struck a chord with me.

hi ALice - pun intended I'm sure well noted

It was along the lines of "never noticed before that the driveway up to my house was on a slight hill".

too true - it's amazing how our perception of the previously invisible has developed and increased a thousand-fold with ME/CFS

 

[Alice Band]

Thanks for noticing that IslandFinn,

I was actually lucky enough to see Keith Jarrett perform back in the days before CFS hit him and my own ME symptoms were "good" enough for me to go out for an evening. I had ear plugs and all sorts of things so I could try and get some of the sound/ambiance without all the sensory over load.

Here's to hoping for better health for us all.

 

[Jerry S]

Keith Jarrett

It was when I heard about Keith Jarrett's illness that I first sought out a doctor and got diagnosed. His music has always held a special place for me. He is also a very good classical musician. I've heard him perform at Orchestra Hall here after he partially recovered. Amazing performance.

A Google search for [Keith Jarrett chronic fatigue syndrome] gives links to several of his interviews talking about the effect the disease had on him and his music.

Something I just learned. From The Guardian October 6, 2006:

His on-the-fly recital from Kln's opera house in 1974 (The Kln Concert) is the bestselling solo-piano album ever, in any genre.

 

[jackie]

I recently watched a book review/interview with Janis Ian (singer, songwriter, activist, author - "At Seventeen", Society's Child", etc.) and she talked about her many years with CFS.

I think she has a website where she discusses what she chose as a treatment/protocol.

I believe it included enforced absolute rest for several months at a time followed by "guarded" (limited) activity. She said she had a "support system" of, like, a dozen or so people to care for her every need (during these "rest periods"), in order to accomplish this.

Very interesting - check out her website. This plan has enabled her to once again, perform (although limited and no air travel).

I've been trying to teach my Pomeranians to at LEAST answer the phone for me (when I need to rest) - but so far they just let it ring and ring. I'm beginning to think they don't even speak English.

Also, wasn't Stevie Nicks (Fleetwood Mac) bedridden for several years? Think so.

jackie

 

[anne]

Well, this begins a little embarrassingly, but hubby and I were just watching So You Think You Can Dance and one of the contestants had some illness for four years, and they showed a picture of her flat in bed. So we wondered. What other illness do you have for four years that you don't name?

 

[Jody]

Never heard of any of these folks tbh. The only famous people I know who have/had ME/CFS is Cher and the author of Sea Bisquit.

I don't wish this illness on anyone... but at the same time I can't help fantisize what it would be like if more famous people had the illness... especially policy makers or scientists... or the president of the United States... Sorry, back off to day dreaming...

Kamina,

We'd probably be seeing more being done if more famous (rich) people had it.

 

[Marylib]

Or if they would admit to having it. Not that I blame them for keeping quiet. Sometimes you have to just to keep a job.
Oh, for the day when everyone can come out of the closet!

Marylib

 

[leelaplay]

an aside or backtrack

Thanks for noticing that IslandFinn,

I was actually lucky enough to see Keith Jarrett perform back in the days before CFS hit him and my own ME symptoms were "good" enough for me to go out for an evening. I had ear plugs and all sorts of things so I could try and get some of the sound/ambiance without all the sensory over load.

Here's to hoping for better health for us all.

More jealousy with a capital J here. How lucky you were to be able to see him!

The Guardian October 6, 2006:
Quote:
His on-the-fly recital from Kln's opera house in 1974 (The Kln Concert) is the bestselling solo-piano album ever, in any genre.

jerry - je ne regrette rien (I regret nothing) except for not being in Koln for that concert. It might be my favourite piece of music. When I envision you extemporizing on the piano it is with sounds and shapes like this whirling around.

Also - jerry gave great ideas on how to teach oneself to play piano by ear. thank you - it's similar to what i try to do. Will try more when can!

if