Famous (and sort of famous) ME/CFS sufferers

rosie26

rosie26

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xks201

You are right, I am not thinking clearly, I have had ME for 12 years and most of it severe. Time for me to get some rest I think! Thanks for correcting me.
 
Guido den Broeder

Guido den Broeder

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xks201 said:
There's no such thing as one true cause of M.E.. M.E. means brain inflammation with muscle pain.

This is what is limiting the treatment of this set of symptoms. It is a set of symptoms, not a disease. There is not just one cause.
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Although there is some variation in viruses, ME patients share a pathology. Therefore, it is a (one) disease, listed as such in the international classification of diseases.

It is exactly being one disease that limits the number of treatments. If it were just a set of symptoms, the number of treatments would be legion.

The problem with ME and fame is that you quickly stop being famous once you have the disease, because your activities end. This in contrast to most other conditions.
 
jimmy86

jimmy86

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Robin Soderling, former world-class tennis player has most likely CFS. He came down after a mononucleosis infection and has been ill for 2.5 years now. Here is an interview with him:
http://translate.google.com/transla...ling-varfor-ska-jag-satta-ett-datum/&safe=off

Also, there is the former German soccer player Olaf Bodden, who is ill since 1997 and form time to time covered in the German press: http://en.wikipedia.org/wiki/Olaf_Bodden
The last thing I have heard from him was that he was trying rituximab as an off-label trial in the Berlin Charité and has since been bed-ridden. Sadly, I remember quite well when I first read in the news in 1997 that he got ill. Couldn't know that I will get into the same misery...
 
heapsreal

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jimmy86 said:
Robin Soderling, former world-class tennis player has most likely CFS. He came down after a mononucleosis infection and has been ill for 2.5 years now. Here is an interview with him:
http://translate.google.com/translate?hl=en&sl=sv&u=http://www.expressen.se/sport/tennis/soderling-varfor-ska-jag-satta-ett-datum/&prev=/search?q=http://www.expressen.se/sport/tennis/soderling-varfor-ska-jag-satta-ett-datum/&safe=off

Also, there is the former German soccer player Olaf Bodden, who is ill since 1997 and form time to time covered in the German press: http://en.wikipedia.org/wiki/Olaf_Bodden
The last thing I have heard from him was that he was trying rituximab as an off-label trial in the Berlin Charité and has since been bed-ridden. Sadly, I remember quite well when I first read in the news in 1997 that he got ill. Couldn't know that I will get into the same misery...
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If robin Soderling just found this web site he could find all the treatments we would all like but someone like he could afford and then he could be an advocate for cfs/me around the world. He was a dam good player too with good wins over Federer and Nadal etc.
 
jimmy86

jimmy86

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heapsreal said:
If robin Soderling just found this web site he could find all the treatments we would all like but someone like he could afford and then he could be an advocate for cfs/me around the world. He was a dam good player too with good wins over Federer and Nadal etc.
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Indeed, he earned around 10m in his career. Maybe we should just drop him a line on facebook....
 
heapsreal

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jimmy86 said:
Indeed, he earned around 10m in his career. Maybe we should just drop him a line on facebook....
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who would u see with $10m behind you??
reading a few post of his it sounds like his quality of life is still good but he knows he doesnt have that world class fitness anymore. A 50% reduction in function for him would still be quite good for a normal person i guess, but then he's probably not elaborating much and probably avoiding the word cfs as it implies to the unknow as being lazy or depressed. I would like to see him comeback, aggassi played well into his mid 30s and federer is still going.

cheers!!!
 
jimmy86

jimmy86

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heapsreal said:
who would u see with $10m behind you??
reading a few post of his it sounds like his quality of life is still good but he knows he doesnt have that world class fitness anymore. A 50% reduction in function for him would still be quite good for a normal person i guess, but then he's probably not elaborating much and probably avoiding the word cfs as it implies to the unknow as being lazy or depressed. I would like to see him comeback, aggassi played well into his mid 30s and federer is still going.

cheers!!!
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tough question, maybe Dan Peterson... I see many resemblances between him and me, as I am also not that ill compared to many here but far away from my pre-cfs level. I think he also avoids to acknowledge his cfs as he still has some hope to get well soon. Thus, if we want to contact him we should be very careful, in order not to offend him.... Still, I think it would be a good idea to get in touch with him, offering him some help/advice and not only asking him to advocate for us. It would be great if he returned to the court!
 
dannybex

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heapsreal said:
who would u see with $10m behind you??
reading a few post of his it sounds like his quality of life is still good but he knows he doesnt have that world class fitness anymore. A 50% reduction in function for him would still be quite good for a normal person i guess, but then he's probably not elaborating much and probably avoiding the word cfs as it implies to the unknow as being lazy or depressed. I would like to see him comeback, aggassi played well into his mid 30s and federer is still going.

cheers!!!
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Sometimes, or maybe even most often, the best docs are the ones without the name recognition. None of the half-dozen people I know who have recovered ever saw any of the so-called 'name' doctors.

Also, I think that with this illness, most of the work that leads to improvement is ultimately in the hands of the patient.
 
meadowlark

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This isn't "People Magazine" type fame, but the noted British novelist Mischa Hiller has chronic fatigue syndrome. He had two novels published in 2011, "Sabra Zoo" and "Shake Off." Both got wonderful reviews, and "Sabra Zoo" won the Commonwealth Prize. I just tried his website, and it is down for some reason. But when I read it a few months ago, he included a moving article he had done explaining that he had been unable to fly to Australia to accept the Commonwealth award due to ME/CFS. He often mentions his illness on Twitter.
 
heapsreal

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Theodore said:
He is much better now

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Wow great to see. Sounds like he's still pacing himself and gets pem when he's to active. Sure sounds sick in those first 6 to 12 months.

Like to see him interviewed by a cfsme person as i didnt like the question comparing this to depression. He answered well how he wanted to get out of bed and train and play but he couldn't .

He looks happy and contented with life.

Nice to know if he used any specific treatments like antivirals etc

Cheers
 
mango

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