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Australia: Professional site for GPs recommending graded exercise therapy (March 2015)

Discussion in 'General ME/CFS Discussion' started by Dolphin, Oct 22, 2015.

  1. Dolphin

    Dolphin Senior Member

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  2. Cheshire

    Cheshire Senior Member

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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    The PACE trial is their reference for their therapy intervention.
    There is the possibility for making a comment.

    Once again, was it S Strauss who coined CFS forever confusing ME with anything and everything fatigue related?
    Until this is separated this will continue to happen.

    CFS and PACE the bane of this community.
     
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  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    GET for folk with COPD?! WTF is up with their heads?
    Saw COPD slowly kill my mum, exercise...?!
    I'd take a ball pein hammer to anyone who tried to force than on her.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    But a person with copd will produce new lung tissue if they exercise for one hr everyday? ??????
    I think cbt/get is possibly another way to see patients more regularly and get payed more often, very dodgy.
     
  6. minkeygirl

    minkeygirl But I Look So Good.

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    I don't understand where these idiots think treating a physiological illness with exercise works? Next an hour in the treadmill will cure cancer.
     
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  7. Hutan

    Hutan Senior Member

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    I've given some feedback. I'll let you know if I hear anything.

    It would be great if others gave feedback too.
     
  8. Snow Leopard

    Snow Leopard Hibernating

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    Some people actually believe that positive thinking and exercise can improve cancer survival (positive psychology). It is the likes of James Coyne and others who contest these beliefs.
     
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  9. Woolie

    Woolie Senior Member

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    Irrespective of the value of exercise in these various conditions, what I can't stand is the profound paternalism of this stuff:

    Patients of course can't be trusted to read the signals from their bodies well enough to know when they should and should not exercise. They are so silly, they just go off and try to do too much, then crash! Or worse still, refuse to exercise at all, through irrational fears! Or sometimes both at the same time (yes, apparently!)

    What these poor misguided people need is someone on the outside with no access to their internal bodily signals at all, but some training from a handbook to "tell" then what to do and when.

    You might think, well if this "handbook" is so all-powerful in conferring benefits, why not give it to the patients themselves and let them set their own programme? Silly you, you know they are only patients - and therefore probably either really stupid or psychologically dysfunctional. They cannot possibly be trusted with that sort of responsibility!
     
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  10. daisybell

    daisybell Senior Member

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    I commented and gave links to the MEA report and the David Tuller blog.....
     
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  11. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    I saw the way many of the ratbags treated my Mum.
    One doctor, a consultant, as soon as I wheeled my mum into his office in her wheelechair, got up and he, laughing, pushed her into the corner, facing into the corner and said "That's how women should be treated seen and not heard!"
    and later claimed he'd never done such a thing.
    It had taken all my strength to push her in there thanks to this damned M.E., and same doctor had been one who'd helped me get testosterone shots when another consultant ignored blood tests because of his bias against M.E., but this doctor who'd had phone conversation with my mum (medical consultation), thought she was an old disabled woman and he could have fun with her. So I didn't bajno the son of a bitch, but I wheeled her out of there in fury.

    A pair of officious shitheads form the local council made her walk down the stairs at the front of our house, they're over 5' high and real scary when you have COPD, partial paralysis from spinal injury, terrible pain from that injury, and arthritis. they had no BUSINESS doing that, they had no legal right, they weren't doctors, it was about putting in a wheelchair ramp for her and they were just being officious pricks!
    I was too sick to even get out of my bed and I was ashamed and infuriated beyond belief I couldn't help her and stop the bastards.

    Or the doctor who'd sexually molested her, and I heard the exact same kind of thing about that doctor from several other women over the years independently.
    because she was an old, sick woman, she got treated like dirt by some folk. when she was more vigorous she'd have steamrollered them, she was one hell of a ballsy, brave and smart person. But as an old, sick female...like chum in the water :(

    She *COULDN'T* exercise, if someone had forced her, it would have been torture and it would have killed her, so I'd have beaten the living shit out of them first. I don't like that, it's just my disgusted, horrified experience in life that arrogant, bullying, uncaring even outright socio/psychopathic bastards can only be stopped by victims beating the hell out of them.
    Sigh.
     
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Unfortunately many get a big ego trip treating others like shit. No one lives forever and they will get there turn and will have a light bulb moment of the time they were speaking down to people or treat them like shit.

    Sorry your mum had such a crap experience .
     
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  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    Thank you for doing that. I know I suggested it but have not given FB. I don't want to continually sign in to these sites and I'm busy twittering and such so doing other things. But having comments here would be good.
     
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  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    I saw an article recently on twitter that basically said that positive psychology is for well off white people. Or in other words people who have normal life challenges but also resources to deal. So it's all about making the group that has resources to cope more comfortable in order to not get down about having a bad day.
    Which I point out because of course, that's how I've perceived PS. There is also research that to some extent we are wired with a base set point for how upbeat (or not) we are about our world. Whatever the reality, I still see the first point as valid.
     
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  15. aimossy

    aimossy Senior Member

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  16. Hutan

    Hutan Senior Member

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    So here's the feedback. Basically, never mind if there are problems with PACE, the Cochrane review tells us GET is great and certainly not harmful. And besides, it's good enough for cancer and multiple sclerosis patients...

    I'll probably write back with more comments but I suspect I'm beating my head against a brick wall.


    Thank you for providing feedback to the Handbook of Non Drug Interventions (HANDI) regarding the intervention: Graded exercise therapy for chronic fatigue syndrome


    We have received a number of comments, particularly regarding the design of the 4-arm PACE trial conducted in the UK. Readers should note that the inclusion in HANDI was not based on a single trial, but on consistent findings from several trials. The Cochrane Systematic review(1) included 8 randomized trials of exercise for chronic fatigue syndrome, and found that: "Seven studies consistently showed a reduction in fatigue following exercise therapy at end of treatment, even though the fatigue scales used different scoring systems".

    From these 8 trails, the authors concluded "Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes."


    This benefit is also consistent with the findings in several other diseases. As some examples, exercise has been used successfully used to reduce fatigue in cancer patients, both during(2) and after(3) initial therapy, and for patients with multiple sclerosis(4). It appears that, whatever the mechanism of fatigue, deconditioning occurs but can be reduce or reversed by carefully titrated reconditioning.


    I hope this information has sufficient addressed your concerns.


    Kind regards

    The HANDI project team.

    www.racgp.org.au/handi



    References

    1.Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome.Cochrane Database Syst Rev. 2015 Feb 10;2:CD003200. doi: 10.1002/14651858.CD003200.pub3.

    2.Mishra SI, Scherer RW, Snyder C, Geigle PM, Berlanstein DR, Topaloglu O. Exercise interventions on health-related quality of life for people with cancer during active treatment.

    1.Cochrane Database Syst Rev. 2012 Aug 15;8:CD008465. doi: 10.1002/14651858.CD008465.pub2.

    2.Mishra SI, Scherer RW, Geigle PM, Berlanstein DR, Topaloglu O, Gotay CC, Snyder C. Exercise interventions on health-related quality of life for cancer survivors. Cochrane Database Syst Rev. 2012 Aug 15;8:CD007566. doi: 10.1002/14651858.CD007566.pub2.

    3.Heine M, van de Port I, Rietberg MB, van Wegen EE, Kwakkel G. Exercise therapy for fatigue in multiple sclerosis. Cochrane Database Syst Rev. 2015 Sep 11;9:CD009956. doi: 10.1002/14651858.CD009956.pub2.
     
  17. Esther12

    Esther12 Senior Member

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    Thanks for commenting on this.

    I wonder if the comments @seaturtle raised with Cochrane could be worth mentioning as a response to their response? Along with the PACE data release showing how results were spun?

    http://forums.phoenixrising.me/inde...ane-review-of-exercise-therapy-for-cfs.45282/

    I was just re-reading the RACGP page, and they do promote PACE pretty heavily. Hard to see how they can act like the problems with this trial (and the others they use) are not relevant.

    Exercise being of use to those with other health problems seems pretty irrelevant.
     
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