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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Famous (and sort of famous) ME/CFS sufferers

Discussion in 'General ME/CFS News' started by margib, Oct 26, 2009.

  1. rosie26

    rosie26 Senior Member

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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.
  2. xks201

    xks201 Senior Member

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    That assertion is very common. No worries.
    rosie26 likes this.
  3. Seewell

    Seewell Senior Member

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  4. Guido den Broeder

    Guido den Broeder *****

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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.
    rosie26 likes this.
  5. 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...
    Dolphin and heapsreal like this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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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 likes this.
  7. jimmy86

    jimmy86

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    Indeed, he earned around 10m in his career. Maybe we should just drop him a line on facebook....
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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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!!!
    merylg likes this.
  9. jimmy86

    jimmy86

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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!
    heapsreal likes this.
  10. dannybex

    dannybex Senior Member

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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.
    BEG, heapsreal, Dan_USAAZ and 2 others like this.
  11. Dolphin

    Dolphin Senior Member

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    3-minute interview with BBC Radio 3 Composer of the Week, John Rutter, where he talks about his 7-year battle with ME.

    He says he's over it (but I always wonder about that with sedentary jobs and the like)

    Mog and leela like this.

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