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Woman 'with ME' won world kickboxing championship

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

  1. Barry

    Barry Senior Member (Voting Rights)

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    Clearest indication it was not ME. How many people here would ever describe their condition as "a bad bout" of ME. It was no doubt a nasty case of chronic fatigue of some kind, but it was not ME/CFS.

    As I said on PR some time back (and bearing in mind it is my wife who has ME not me), I went through a quite long period of what I used to describe as being "flaked out" and "fuzzy headed" quite a few years ago now, and used to wake up feeling like I'd never been to bed. But I never felt it to be ME, and no one ever suggested it was. As a completely unrelated activity, I started cycle commuting to work, and suddenly realised 6 months down the line I was much better. But like I say, I'm sure I never had ME - never had real physical exhaustion; never had PEM. But, if I'd been asked to describe my feeling of "fatigue" (a.k.a. feeling knackered as I used to say I felt), I would probably have scored it quite high, even though my physical capabilities were unimpaired - apart from being unfit prior to cycle commuting.

    When I look back to how I was then, compared to how my wife is now, there is a crucial difference. I still had my physical capabilities; otherwise I could never have taken on a hilly cycle commute of 14 miles a day in the first place. My wife wouldn't have a cat in hell's chance, the physical capability is not there; it used to be though, we used to walk all over Dartmoor, The Lake District, South Downs, etc, and my wife had her own gardening business ... until she was struck down with ME.

    But, and this is very pertinent, I think it highly likely EC and Co would have readily swept me up into their "chronic fatigue" net, conflated it with with ME/CFS, and then triumphantly proclaimed how my exercise regime had cured my ME :rolleyes:. I really don't think they realise how profound the distinction is! And as a consequence I suspect they really do believe they are fixing people with ME ... "It's all the same thing" I'm sure they think, and "these agitators just think it's something different". They really just don't get it.

    As a slightly amusing aside, and gives a clue I suppose to how unused to exercise I was, on my first day of cycle commuting (having car shared for many years previously), I decided I'd better stoke up on fuel well, before embarking on my new energetic activity. So I did myself a good fry up, in grand English breakfast style. Later, halfway up one of the hills, I had to stop and came perilously close to throwing up at the roadside! Rapidly learned my lesson that that was not the right way to prepare for my cycle commute :p.

    Edit: Re-reading this, makes me realise what a desperately misleading name, as so many others have already said, Chronic Fatigue Syndrome is! Because in citing my own experiences above, I would have described myself as feeling very fatigued, even though my physical capabilities were still fine. No wonder it's such a b*lls up!
     
    Last edited: Dec 2, 2017
  2. Trish

    Trish Senior Member (Voting Rights)

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    I'm concerned about people trying to diagnose someone else's illness - we can't possibly know the full story. It's not the fault of the young woman in this article that she may have been misdiagnosed. We need to be careful about judging people.

    It's a great pity, however, that articles like this perpetuate the misconception that ME is something that can be treated successfully with determination and diet.
     
  3. Barry

    Barry Senior Member (Voting Rights)

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    I agree 100%, and I should have clarified in my post above, but thought I'd written enough. I don't apply any judgement whatsoever on the lady who is the subject of this article, and it's a pity if I give that impression. I'm sure she really does believe she had ME, along with other people involved. I was really meaning to say simply that I do not believe she had ME, and in no way meaning to imply she was deliberately misleading people; I think it far more likely she has also been misled, in turn very likely by people who also have genuinely confused the diagnosis. It's a diagnostic minefield.
     
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  4. Trish

    Trish Senior Member (Voting Rights)

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    @Barry, my comment was not specifically addressed to you, more to the general tone of some of the posts in this thread.
     
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  5. Barry

    Barry Senior Member (Voting Rights)

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    Agreed.
     
  6. andypants

    andypants Established Member (Voting Rights)

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    @Trish you’re right and I didn’t intend to give the impression I was (or even have the competence to) giving her a diagnosis. I absolutely do not blame that poor woman for being sick and tired, and I agree we don’t know the full story.

    Like many others I felt the need to vent when once again it becomes so very apparent that neither doctors, journalists or anyone else know anything, and won’t make the effort to know anything, about ME as opposed to fatigue. It’s not even something I can really blame them for, I didn’t have a clue until I got sick myself.

    It’s still aggravating and I appreciate that we have somewhere to share that feeling with others who get it. It contributes to the perception that you can just “fix” yourself, like when my sister called me yesterday to tell me of her friend’s mother who had “cured” lots of people with ME at her acupuncture clinic.
     
  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    I agree. I thought @erin 's post was not at all fair.

    Lots of people with a range of different levels and types of health problems end up with a diagnosis of ME, and it's good to try to be supportive of all. It's good to challenge misinformation, but that should also be done cautiously and with an awareness of how much uncertainty there is around ME/CFS. When there is so much misinformation out there, I expect that at some point or other we've all been responsible for some spread of misinformation ourselves.
     
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  8. Inara

    Inara Senior Member (Voting Rights)

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    I don't believe she has ME. I still have high respect for her.

    She says all she needed was a strong will. Well, every training person has this. I daresay me, too. That doesn't change that I feel like crap during training/going for walks; it just means I bear the pain longer, often too long; before my diagnosis far too long and far too often, ignoring all the signs.

    That's my experience, too. Endurance training is very hard for me now. :(
     
  9. pteropus

    pteropus Established Member

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    just to add my 10 cents ... she might have gradual onset ME ...

    - - - - -

    i had POTS at age 19-23; caught mononucleosis / glandular fever / epstein barr virus at age 21; for the next decade i had intermittent problems with my health, that included episodes of *severe exhaustion* that required bedrest.

    then at age 32 i caught a virus (enterovirus ? coxsackie ? arbovirus ?) that knocked me sideways, took nearly 18 months to recover, and thereafter i had more frequent episodes of *severe exhaustion* that left me bedbound for 1-4 weeks. despite these episodes of *severe exhaustion* (identical to severe PEM), i was able to be very physically active - doing the equivalent of 2 triathlons a week.

    eventually i became too sick to work, and was diagnosed with ME/cfs, Canadian Consensus Criteria, meeting ALL of the criteria. i was severely harmed by GET, and still stuck at about 20-30% of 'normal' function.

    - - - - -

    my point is this - after my last big virus, and before my ME became severe, i was still able to do a lot of vigorous activity - despite lots of obvious neurological problems, that i didn't recognise until much later. if i had been this woman, competing in her sport, my comments might be identical - congratulating myself for 'pushing through', not realising i was setting myself up for a future health disaster. she mentioned 'anxiety' that kept her bedbound - perhaps she had POTS, which most doctors would misdiagnose as anxiety, because of the high HR.

    so maybe she does have ME. or a mild early stage of ME.

    some people with MS can compete in marathons. they still have MS.

    - - - - -

    for responsible journalism, i think the article should have clearly specified where she is on the ME scale, and clarified that most people with ME are much more severely affected, and that exercise is severely harmful for them.

    [edited to add] to be honest, when i was in that intermediate stage, exercise seemed to help me, and definitely left me euphoric - i suspect my strong leg muscles helped pump more blood, which lessened the impact of POTS & OI.
     
    Last edited: Dec 6, 2017

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