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Paralympics for people with ME?

Discussion in 'General ME/CFS Discussion' started by Firestormm, Aug 29, 2012.

  1. currer

    currer Senior Member

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    No, Godwin time is quite a relevant point. Our present governments are fascist, and I believe can only get worse as their policies will fail to bring about the changes they want to see. It is worrying.

    In fact, thinking about it, CBT and GET could be seen as "Triumph of the Will" type concepts, the one acting on the immaterial mind, the other on the material body.
     
  2. peggy-sue

    peggy-sue

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    It's an extension of "the American Dream".
    If you put in enough effort you will succeed.
    If you are poor and disabled, it's because you haven't tried, it's because you want to be poor and disabled. It's your own choice and your own fault.
    It's a very harmful attitude, which emphasises one individual at the expense of others; might is right, rather than the higher-thinking-level and constructive-for-all humanist co-operation of community.

    There was a paper published on Medline just last week, which had studied the "will to push through and fight" in cancer.
    It found that having the fighting spirit did absolutely nothing to improve chances of survival.
    It might make the sufferer feel more vaild if they do "fight" though.
     
  3. Firestormm

    Firestormm Guest

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    Don't you feel you are 'fighting' Peggy-sue? I sure as hell do. And as for CBT and GET I continue to regard them both as nothing more than management strategies that you can take from whatever you choose.

    Not sure if this thread has moved beyond the original discussion or where it's now going.
     
  4. currer

    currer Senior Member

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    Actually, firestormm, this has turned into an important discussion, and I am going to try to clarify in my own mind why I feel it is so important.

    I had a strong reaction to your suggestion that we should/could be involved in the paralympics. Now why?

    I actually feel slightly threatened by the paralympics because the enthusiastic publicity for them suggests something more to me than that the disabled are accepted in society as the equals of the able-bodied.
    I think they can be used to promote a politically correct view of the deserving sick. The deserving sick are those who fight back against their illness and do not allow it to limit them

    The undeserving sick, then are those who do not do this.

    And how will you know whether a person is deserving or undeserving?
    Because they strive in a visible and socially acceptable way and overcome their limitations.

    This assumption stigmatises all those disabled who cannot succeed in overcoming their illness.

    And the politicians who have the most to gain from cutting back on the welfare state cannot wait to line up and find the paralympians inspirational.
     
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  5. currer

    currer Senior Member

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  6. Firestormm

    Firestormm Guest

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    Currer you never fail to disappoint - do you realise that? :)

    The thread was never intended to be as you have made it out to be above but don't let me stop you now.

    Back to the subject matter. As I mentioned to some degree in my opening post I do wonder what people with a similar disability or disease feel about those who are able to not only compete in (in this case) the Paralympics but about the way in which these 'super-humans' (my phrase) are headlined when medals are won.

    I dare say it is a something of a 'mixed bag' reaction. Is it too unreasonable to think that 'many' would find these Paralympian's inspirational? That we might also?

    I think it only natural (certainly was for me when I was at my worst and laid up for months on end) to sometimes view the 'over achievers' as somehow diminishing the ability of others or raising expectations among the 'able bodied' and (perhaps of more concern) those in charge of the benefit's systems etc. of disabled folk in general.

    However, these chaps are exceptionally talented individuals and I see them no differently as I do Olympians. And the same is true of athlete's generally. I certainly don't feel they 'point the way' to what is a realistic proposition for us all to strive and achieve. Rather that they are the exception to the rule as it were.

    Now let's say (again hypothetically as has been the thrust of this thread) that someone with ME does manage to pursue their natural talent for athletics - or embarks on a career in athletic competition if say they developed ME as a child - in a sport that is appropriately tailored to their disability. Would we not (should we not) see them in a similar way to what we (assuming you share my view) see Paralympians in this instance - or any other disabled athletes e.g. as exceptions to the rule and inspirational/exceptional?

    It is of course perfectly reasonable to assume that some conditions will prevent adjustments being made to enable participation in competitive disabled sports. It is perfectly possible that ME is one such condition; but will it always (if that is your view) be that way?
     
  7. currer

    currer Senior Member

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    This thread has also highlighted the confusion that exists in our minds, about what illnesss and disability actually are, and how they impact on performance.

    If we are confused about this, the politicians and administrators who have power over our lives can utilise this confusion as a means to promote their own agenda, one which is against our interests.

    It is important that everyone with ME understands why they are disadvantaged compared with many other groups of disabled people, and why they cannot adapt to their sickness as well as some other groups.

    It is because they are sick and untreated, and hence are the victims of an uncontrolled disease process.
    It is because they are sick and unfit - and not healthy, fit, but physically impaired..
     
  8. peggy-sue

    peggy-sue

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    I've been protesting about Dow - and Union Carbide before them, for years.
    The legacy of the horror at Bhopal goes on and on and on.

    Firestorm, I do not "fight", unless you count the fight I have to force myself to rest enough to cope.
    I detest resting. But I detest being in payback more, and I know that any time I am in payback only makes getting better further and further away. So it's not too much of a "fight".
    I'm a pacifist anyway. I hate competitive sport too. :p
     
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  9. Firestormm

    Firestormm Guest

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    I would suggest that you do 'fight' against your condition then Peggy-sue - realistically as determined by it's severity. As (if I may) do I. I constantly strive to 'push myself' realistically. It took many many years of unrealistic 'fighting' until I was better able to accept my disability for what it was.

    Now that unrealistic 'fight' led to much 'booming and busting' and to the significant 'relapsing and remitting' over those many years (not helped by other infections and my reactions to them).

    I am now more realistically ensconced within my ability zone (if you like); but I never stop pushing against those limits. And for me this means trying daily to 'exercise' and this (for me) means trying to go for a realistic walk or taking part in some gardening activity.

    For others (also depending on the degree to which the condition affects them on any given day) the 'activity' will vary. I am suggesting (albeit hypothetically) that it might not be unrealistic to think that someone, someday might be able to compete as a Paralmpian.

    I honestly don't think anyone with our condition stops 'fighting' Peggy-sue - in their own relative way.

    Now, hypothetically speaking, if someone with ME ever attained the necessary excellence to take part in an appropriate event - would you root for them as much as you did for any of the current Paralympians with other disabilities? Or would you perhaps deem them as 'not really having my condition'?

    What would it take to alter the latter perception? Would it require a diagnostic marker perhaps - as we were speaking about previously.

    Edit: Sorry matey. I've done some editing and buggar I just realised it was Peggy-sue I should have been replying to - sorry Peggy-sue!
     
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  10. currer

    currer Senior Member

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    If we were treated, (lets say with rituximab,) and this worked, we would be able to compete in athletics.
    In fact one of Fluge and Mella's ritux patients did just that. She recovered and took part in active outdoor sports.

    .



    But I doubt she would be allowed into the Paralympics.

    You see, she is not disabled any more.
     
  11. peggy-sue

    peggy-sue

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    It was me, not Currer, Firestorm, and I will not go pushing myself further and further, thank-you very much!

    Life has already forced me to "push through" way beyond what I should, on a few occassions. This has reset my baseline operational level to levels considerably lower than what they were previously, I see no hope of regaining my original level... it's 7 years since my first massive and prolonged overdoing.

    I've been sick for 10 years now, I know how I react.

    I don't "root" for any sporty anything, I avoid sport. It's unutterably tedious.:p

    Edited to add:

    I do believe the things that qualify for the olympcis have changed a lot over the years - there used to be poetry and literature and art included.
    However, because of the rule about contestors being soley amateur, these things got dropped.

    Perhaps it's time to bring them back?
    It's not as if the other contestants are amateurs any more.
     
  12. currer

    currer Senior Member

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    You're right peggy sue, poetry and literature used to be part of the ancient festival. It would be nice to see a broader celebration of human achievement.
     
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  13. peggy-sue

    peggy-sue

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    Be nice to see amateur achievement.
     
  14. Firestormm

    Firestormm Guest

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    Again I apologise for my oversight there peggy-sue I did provide an edit once I had realised which preceded this post of yours.
     
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  15. Firestormm

    Firestormm Guest

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    Currer, you are talking about a cure. Those competing in for example the paralympics or in disabled competitions generally with a disease are treated with drugs and other things that help but do not cure.

    If you are cured you are presumably no longer 'disabled' so of course you wouldn't qualify for the paralympics. Duh!

    Suggesting that any one treatment will provide a cure is at this point unrealistic more so when nobody has yet to expand our knowledge of the aetiology of the condition (or conditions) that comprise the diagnosis of ME.

    If research reveals the aetiology of ME and should a treatment be forthcoming that - like Parkinson's or MS for example - helps us to better manage the condition by for example regulating it's effects; some of our number might feel better able to participate in disabled sports. That was really what I was trying to talk about.

    Could someone with ME ever be seen in the same positive way as others who compete in the paralympics (or competitive disabled sports generally) by their peers with the same diagnosis or by people in society generally?
     
  16. currer

    currer Senior Member

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    I doubt whether an illness whose main symptoms are fatigue and malaise, made worse by exercise and repeated activity, could ever allow participation in active sport.
    Unless the sickness were treated to alleviate precisely those symptoms, in which case the sufferer is no longer disabled.
    Therefore they would not qualify for inclusion in the paralympics.

    I hope this clarifies the distinction between sickness, ill-health, disability and fitness.
     
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  17. biophile

    biophile Places I'd rather be.

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    I appreciate Firestormm's attempt at portraying ME patients as having genuine impairments on par in seriousness with classic disabilities. However, I think there are too many complications for there to be ME patients in the Paralympics. I agree more with currer. ME is characterized by post-exertional symptomatology, exacerbations, or relapses. The entire notion of ME patients in the Paralympics seems highly problematic. Even if there is a treatment, pushing may still be detrimental, and it is still difficult to measure disease status. I am going to repeat my previous short post and add to it:

    I also share currer's and peggy-sue's concern about notions involving triumph of the will and effort for success, etc. There are instances where these can be useful, but can also be dangerous (as many patients found out the hard way). currer is also spot on about the negative implications; people love the underdog "fighting against all odds/limitations" stories, but these tend to bring blame for those who could not overcome their circumstances for whatever reason. For illness, the failures become perceived as the undeserving sick who gave in, did not do enough, or allowed illness to overcome them. Perfect for political correctness on reducing welfare, but we now know from the PACE Trial that CBT/GET do nothing to help people get off welfare or prevent them from getting it. That is a major blow for the pro-CBT/GET politicking.

    The argument between peggy-sue and Firestormm about "fighting" seems to depend somewhat on the definition. Firestormm does have a point about attenuating or balancing the fight relative to one's ability, but I would say I am accepting, dealing, making do. These are not giving in, but working within limitations, which does not preclude gently pushing boundaries now and then. After a certain severity, there is no need to purposely test the waters, as this happens accidentally or forced on us due to circumstances anyway.

    I was into fighting in the earlier stages but I had to frequently downgrade my fighting and expectations until it reached a point where it was not really "fighting" anymore. I find that a limited degree of "pushing through symptoms" is a practical consequence of daily life and maximizing functionality, but it should not be used as a fighting tool to "overcome" the illness or permanently increase overall activity levels beyond current capacity or health status. I no longer believe in forcing myself to exercise for the sake of exercise or because some CBT/GET proponent disregards my experience, it just does not work and I have more important expenditures.

    peggy-sue also points out the recent large study on fighting and cancer, which demonstrated no effect on outcomes. I think there is CFS research which demonstrates unsurprisingly that a lack of acceptance is actually detrimental to outcomes.

    [edit: as currer has pointed out, there is also a distinction between illness, disability and fitness]
     
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  18. currer

    currer Senior Member

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    I am concerned by the confusion that there seems to be between disability and sickness.

    If some patients seem to be confused about this, I am sure there is also confusion in the public mind.

    I recently saw film of the paralympic wheelchair sprint finals when all the contestants were exercising to the absolute limit of endurance.
    These are fit and healthy people, even though they had no legs.

    Very different from the sick.
     
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  19. Alistair

    Alistair

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    Wagga Wagga
    It would be a classification challange thats for sure, @30 known biomarkers at this stage, 9 subclasses of ME/CFS, and 10 different levels of measured recovery
     
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  20. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    *EXACTLY*
    We are "disabled" because of severe sickness
    We have a chronic health problem, not loss of limb/sense (not that they arent' serious issues, especially with pain problems or blindness which frankly I couldn't cope with, urf)
    It'd be liked having someone with cancer, arthritis, or active malaria at the paralympics.

    Anyway the paralympics has been used as a propaganda event for those bastards (Cameron/Clegg) just like the 1936 Olympics for the Third Reich.
    but...the Public didn't fall entirely fall for it ;)
    LOVED seeing Osborne gettign booed, the slimey sh*t, muhaha! ;)
    http://www.guardian.co.uk/sport/2012/sep/03/george-osborne-booed-paralympics
     
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