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Open Chronic fatigue syndrome participants wanted for aquatic exercise trial Published 22 February 2019

Discussion in 'Recruitment into current ME/CFS research studies' started by Sly Saint, Feb 28, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    upload_2019-2-28_12-36-17.png
    https://www.scu.edu.au/engage/news/...cipants-wanted-for-aquatic-exercise-trial.php

    "“Currently there is no cure for CFS, and in some cases, the condition can persist for several years,” said co-researcher Dr Suzanne Broadbent from the University of the Sunshine Coast."

    some?
     
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  2. Trish

    Trish Moderator Staff Member

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  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Now staying in an hotel on the Sunshine Coast with a brief swim twice a week sounds wonderful. Good fresh food on room service, a beautiful sea view.

    If it could be organised, I am all for it. Though it would be hard to know if any improvement resulted from a virtually complete rest cure, or the swimming.
     
    Last edited: Feb 28, 2019
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  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    On a more realistic note, the statement that "in some cases, the condition can persist for a number of years" does not inspire confidence that Dr Broadbent has any real understanding of our condition.
     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Is chronic self-slapping-to-the-face key to not saying stupid things? It may, it just may. Unless the real key is self-ass-kicking. Or it may be wearing a donkey hair toupee. It may be a lunar rock diet. Who knows?

    It takes years of advanced training to be a research scientist. And this is what they do with it. Like training to be an astronaut and applying those skills to be a ski lift operator. What a freaking waste of everything.
     
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  6. shak8

    shak8 Senior Member (Voting Rights)

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    There was a previous pilot study done. Guess those "research subjects" were self-selected. In other words, they had minimal to mild ME and could get to the pool as directed and on schedule.
     
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  7. shak8

    shak8 Senior Member (Voting Rights)

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    Previous and current research study has self-selected participants. So folks with mild ME sign up as they show up as scheduled.

    Certainly not generalizable to all ME people.
     
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  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Presumably the study is not going to record participants' total activity 24/7, in order to know if any 'improvement' is due to an actual improvement or merely reflects a reorganisation of priorities enabling a misleading apparent improvement by unconsciously cutting back on other activities.

    In the past when I have committed to something that I hoped would help me, I focused on doing that and dropped other things without realising it. However it is only when I record everything I do, that I recognised that whilst I thought I was improving short term, there was in reality no change in total activity, just a change in what I did within my available energy resources.
     
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  9. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Can’t some of these ME action groups write a letter indicating that aquatic excercise trials are not seen as a priority research need for pwmecfs? I’ll sign it.
     
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  10. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Didn’t look too bad til this last quote. Haven’t read any of the links.

    Yes, definitely focused on those less affected but, honestly, I have wondered if aquatic activity might be more easily tolerated than more upright movement. Also pressure, body support etc.
    But would need to control for effects of participating in study.

    The point of a good study of this would be to compare activity types for PwME (to see if those still desperately clinging to some fitness/function could find a benefit in prioritising one kind of activity over another).
    [Completely useless for those who are already close to their envelope every day (and unable to easily and sustainably reduce daily activities further to spare spoons for aquatic activity).]

    Yes, I can see how results could be misinterpreted/abused (shudder) but I disagree that we should entirely avoid all investigations of this sort (non-drug based investigations of ways to improve quality of life).

    Unfortunately, with that last quote, she lost my optimism about whether these particular investigators are the right ones to carry out this trial.
     
  11. Wonko

    Wonko Senior Member (Voting Rights)

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    As I believe I commented on the trial, this approach may well work for people who are unfit/deconditioned, or have joint problems, by supporting the body and increasing the effort needed to make simple movements.

    In a condition, like ME, where the problem isn't with lack of fitness or joints then increasing effort needed to make simple movements will not cause an increase in fitness and eventually increase capability.

    It will cause harm.

    It is my belief that anybody it doesn't harm doesn't have ME, whatever they've been told.

    Like training for a marathon with 2 broken legs, and no wheelchair.

    It's just stupid and shows just how little they understand or believe about ME.

    :banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead:

    (yes I'm in a bad mood, my plans for this evening didn't happen)
     
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  12. daftasabrush

    daftasabrush Senior Member (Voting Rights)

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    Aquatic exercise? Could it get any more dangerous? How many lifeguards per patient?

    I would be interested in how they respond to questions like whether they have a hoist to get people in and out of the water.

    I notice this is studying the "benefits" and not the effects. BPS model continues to harm...
     
  13. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    I hadn’t thought of this as being about resistance exercise in the water. I was thinking of slow, gentle, supported, being in the water sorts of gradual movement.

    Yes, “exercise” and “benefits” do ring alarms. Yes, putting on a (women’s) swimsuit is strenuous and exhausting.

    Ga.
     
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I was fortunate enough in my second or third year of illness to stay somewhere (private) for a few days with an outdoor heated pool which I had to myself.
    Initially I was terrified to get into the water but once in it was so nice to feel 'weightless' and I spent a while just 'floating' and bobbing about then tried very gentle swimming. The biggest problem/struggle came trying to get out of the pool via the steps (no way I could haul myself onto the side of the pool).
    I can't remember exactly how I did it, (ie got out) but as with most things, it was a case of trial and error.

    I don't know if it improved anything or did any harm but apart from the getting in and out bit it was a pleasant experience.

    But in an indoor public pool the intense smell of chlorine, the noise etc etc, no way.
     
    Last edited: Mar 2, 2019
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  15. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Yes, my unthinking associations with aquatic are: a sheltered bay in summer on a quiet day or a very large bath.

    So I thought about logistics of getting there and getting in and out. I thought about hyperbaric chambers, about anachoic chambers, about pressure, support and reduced gravity, strain on heart etc. I thought about how I might work time in a large bath or a quiet summer bay into my life, whether the difficulties in doing these could be worth it.

    I had entirely forgotten about public pools. Haven’t been near one for many years.
    ...the horribly echoes, noise, chlorine (my excuse for forgetting: the pool at school when I was little was outdoor and salt anyway), swimsuits, crowds, movements against water resistance, forced time requiring treading water.... !!!
     
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  16. hinterland

    hinterland Senior Member (Voting Rights)

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    Hmm, eligibility requirements:
    Tick, tick! :thumbsup::thumbsup: Does anybody know if this trial is open to people from the UK??! 6 month holiday on the Sunshine coast...! I'm in too, haha! :rolleyes:
     
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  17. Seven

    Seven Senior Member (Voting Rights)

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    Aerobic excercise is not good idea for Cfs.
     
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  18. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I think just online shopping for a swimming costume is enough to put me off. I'll be thinking of you all while you're off on your Sunshine Coast hols, relaxing pool-side with your low-carb mocktails.
     
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  19. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I'd be interested in a follow-up on the participants of the pilot study beyond it's 5 weeks but oh there isn't one. It shouldn't have been too difficult to do.
     
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  20. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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    I asked Prof Broadbent about the pilot and her views on the PACE trial:
    https://meaustralia.net/2016/10/07/aquatic-therapy-study-at-southern-cross-university/

    After the pilot, she updated me on results and John Muir wrote a thorough, informed response:
    https://meaustralia.net/2017/03/23/findings-on-aquatic-pilot-trial-for-chronic-fatigue-syndrome/

    Just a reminder that Prof Broadbent was appointed as an adviser to the government (the committee whose draft report says 99% recovery within two years). Senator Steele-John did ask the NHMRC “Could I just ask you whether you would agree that it would be concerning if a member of the panel thought that ME or CFS patients could be cured by doing things like aqua aerobics?” https://meaustralia.net/2018/06/15/...h-council-questioned-on-me-and-cfs-committee/
     
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