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...
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Woman 'with ME' won world kickboxing champs

Discussion in 'General ME/CFS News' started by JohntheJack, Dec 2, 2017.

  1. JohntheJack

    JohntheJack Senior Member

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    Swansea, UK
    andyguitar and lauluce like this.
  2. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    that makes no sense... you can't even do kickboxing with ME
     
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  3. Thinktank

    Thinktank Senior Member

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    I've seen how kickboxers and muay thai fighters train, it's brutal and no way a person with ME can do that.
     
  4. hellytheelephant

    hellytheelephant Senior Member

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    A lot of us people with ME couldn't get themselves to the venue and lace up their boots!
     
    Jessie 107, MEMum, alex3619 and 4 others like this.
  5. Zara

    Zara

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    I have done cpet in 2days..just 10 minutes on bike each time. My muscles are burning by lactate overload...i can not lift anything..holding on to my phone while typing this makes my muscles in arms burn. I am typing while laying down.

    Impossible that this woman has ME. Maybe orher type of fatigue due to other illness like sjogre..venus williams as example.
     
  6. Zara

    Zara

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    Ooh she hasbeen through lots of psychological traumas and stress...that also can make you fatigue..
     
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  7. andyguitar

    andyguitar Senior Member

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    Is it a hoax? Is she really Crawley in disguise?
     
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  8. lnester7

    lnester7 Seven

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    I had a “remission” and tried to run, first day 2 min on two off for 20min. Second day started the same about min5 could not run again and walk the rest 15min. Third day I run the first 2 min. Relapsed for 2 years and still recovering. Just saying.
     
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  9. lnester7

    lnester7 Seven

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    Is there a way to know if the article is sponsored or payed for???
     
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  10. calsi

    calsi

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    this would be really hard to believe as true
     
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  11. tinacarroll27

    tinacarroll27 Senior Member

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    I had 10 years in remission (mild ME) but was still having some symptoms. I think I still had ME during those 10 years because I was getting PEM but it took a lot to set it off. During that time I managed to go to university. I could move around and walk very well back then, although I was not very fit and I got tired very easy and got the bus everywhere. No way could I have done a sport even back then, and I think I just learn to pace really well and the ME was milder. Now I am severe so I get PEM from going to the toilet. So sports now? only if you want to kill me!!!!!!
     
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  12. tinacarroll27

    tinacarroll27 Senior Member

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    It probably is Crawley in a wig!!!!!!!
     
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  13. andyguitar

    andyguitar Senior Member

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    Maybe it's a typo error. should read "computer game click boxing"
     
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  14. NL93

    NL93 Senior Member

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    Obvious misdiagnosis is obvious
     
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  15. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    exactly the same here, 10 minutes running for cpet, and my body fails completely
     
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  16. Murph

    Murph :)

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    As someone who has been through some really strong remissions, I can't rule it out.

    During those remissions I thought I was cured. It's now only when I look back that I can see that I was still able to induce PEM, it just was a lot harder to make it happen.

    My advice to this lady would be to hang up her boots though. You'll only make yourself sicker.
     
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  17. HowToEscape?

    HowToEscape? Senior Member

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    If she is self diagnosed or even if she is diagnosed by a practitioner with some sort of kind of understanding of him he has in it is quite likely she never had it to begin with. It is possible that she was relatively strong to begin with and is having a great remission.

    I suspect some of us had an earlier stage of the owners many years before we became disabled, and in the interim (years’ worth) were well enough to do things like run half marathons or perhaps even the full one.

    Any number of undiagnosed conditions could cause systemic tiredness weakness or fatigue and many of those conditions can spontaneously resolve. Having fully developed ME and soon bouncing back into competitive athletic shape just doesn’t add up.
     
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  18. RogerBlack

    RogerBlack Senior Member

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    "add up" ... for the typical course of the disease.

    There have been no (?) rigorous studies of what the normal disease process is in people with CFS/ME in the long-term.

    Do 50% of people recover to pre-morbid functioning soon after being badly affected - certainly not.
    Do 1%? We have no idea.

    ME/CFS is also a diagnosis of exclusion.
    Viruses can - in some cases of people with rare genetic mutations cause specific very odd symptoms in people.

    We know that ME/CFS is not genomically linked simply to anything, but know much less about specific subgroups of the population that might get rapidly better.

    ME/CFS seems likely to be a dysfunction of the immune system. The right 'perfect storm' of odd conditions might snap the immune system back to normal, for some patients.
    I don't think it's very safe to say much more than 'did not follow the typical course of the disease'. And it'd be better to say that in 50 years time after we see she diddn't relapse.
     
    Last edited: Dec 3, 2017
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  19. wastwater

    wastwater Senior Member

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    Maybe it was the last bit of post viral fatigue that can last upto two years or depression
     
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  20. HowToEscape?

    HowToEscape? Senior Member

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    Agreed. I just couldn’t think clearly and comprehensively enough to frame it that way. Cognitive affects of this condition turn one into a Dorian Gray.
     
    Last edited: Dec 3, 2017

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