Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

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

    Messages:
    1,932
    Likes:
    3,296
    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

    Messages:
    713
    Likes:
    267
    That assertion is very common. No worries.
     
    rosie26 likes this.
  3. Seewell

    Seewell Senior Member

    Messages:
    234
    Likes:
    146
  4. 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

    Messages:
    82
    Likes:
    60
    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...
     
    snowathlete, Dolphin and heapsreal like this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,555
    Likes:
    7,306
    australia (brisbane)
    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

    Messages:
    82
    Likes:
    60
    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,

    Messages:
    8,555
    Likes:
    7,306
    australia (brisbane)
    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!!!
     
    Theodore and merylg like this.
  9. jimmy86

    jimmy86

    Messages:
    82
    Likes:
    60
    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

    Messages:
    2,895
    Likes:
    1,420
    Seattle
    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.
     
    Theodore, merylg, BEG and 4 others like this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    8,746
    Likes:
    17,422
    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)

     
  12. Daffodil

    Daffodil Senior Member

    Messages:
    3,868
    Likes:
    2,365
    just found out elijah blue allman, cher's son, had lyme disease. interesting.....
     
    heapsreal likes this.
  13. August59

    August59 Daughters High School Graduation

    Messages:
    1,617
    Likes:
    616
    Upstate SC, USA
    We are all famous now! We made the news this week in no less than 10 different countries.:thumbsup:
     
  14. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    189
    Likes:
    282
    UK
    What about well known scientists/researchersacademics who have ME (or similar)? Especially if they research in the area.
     
  15. meadowlark

    meadowlark Senior Member

    Messages:
    227
    Likes:
    330
    Toronto, Canada
    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.
     
    Jenny TipsforME likes this.
  16. Theodore

    Theodore Senior Member

    Messages:
    358
    Likes:
    227
    France
    He is much better now

     
    merylg and heapsreal like this.
  17. Grigor

    Grigor Senior Member

    Messages:
    244
    Likes:
    208
    Amsterdam
    He's much better. But not better. Otherwise he would be playing.
    Clearly says he still doesn't recover well.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,555
    Likes:
    7,306
    australia (brisbane)
    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
     
  19. mango

    mango Senior Member

    Messages:
    482
    Likes:
    2,235
    merylg and Theodore like this.
  20. jimmy86

    jimmy86

    Messages:
    82
    Likes:
    60
    well why don't we drop him a line?
     
    heapsreal likes this.

See more popular forum discussions.

Share This Page