Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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New breakthrough research: video games to activate people with ME

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Aug 4, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    Best laugh I have had all week. How desperate for research money can they get!

    :p:p:D:bang-head::ill:


    https://www.ncbi.nlm.nih.gov/pubmed/28765100

    Edited to say it gets better! They are crowd funding to launch this research, so dig deep into your pocket folks.
     
  2. Valentijn

    Valentijn Senior Member

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  3. lilpink

    lilpink Senior Member

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    Please tell me it's a joke!
     
  4. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    Hmmmm..... I wonder what results we would find if we ran the authors' names through criminal investigation indexes esp. white collar frauds and scams. Sounds like they're looking to pick low hanging fruit from the desperate and incapacitated. Lots of predators out there looking for easy money.
     
  5. Invisible Woman

    Invisible Woman Senior Member

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    Yeah, see, I need FUN to be motivated into shifting my sorry ass guys!

    Being able to resume all my hobbies, earning a very good income in a job I worked hard and studied to achieve, being all to meet up with my friends, go out etc. etc. - just not motivational enough !:rolleyes:
     
  6. Wonko

    Wonko Senior Member

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    The other side.
    For people convinced we are just deconditioned/have flawed illness beliefs I can sort of see the logic.

    Of course when it turns out they are wrong....they'll probably decide the game wasn't interesting enough and try again.

    Hopefully (I haven't read the paper, just the abstract) they'll have full active monitoring rather than just when the patient is being tortured, sorry, when the game is being played, so they'll be able to see activity levels haven't increased overall.

    But, as this would have a chance of undermining their own false illness beliefs, I would doubt they will go that far, I mean who cares if the patients actually improve as long as the study says they do.
     
  7. Valentijn

    Valentijn Senior Member

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    They're still using allostatic stress bullshit as a basis for their treatment. But they seem to be acknowledging patient reports of harm from GET, and are going for an approach that uses heart rate and patient perceptions to avoid excess activity:
    But they've got their heads up their asses if they think GET can be combined with pacing. They are antithetical to each other.

    A bunch of psychobabble forms the basis of their hypothesis and objectives:
    The people to complain to about authorizing this trial:
    I'm not sure if it's ethical to provide a financial incentive to remain in the study (versus reimbursing for travel expenses):
    This sounds safer and more realistic than their original plan:
    They don't require PEM, but they exclude Oxford at least. But it still allows for Fukuda recruitment, where having ME is optional:
    This seems to restrict the study to mild (or non-ME) patients only, since 5 minutes of light activity is otherwise likely to result in overly elevated heart rate:

    They're using 2-day CPET only for baseline, and not as an outcome measurement:
    They consulted with a couple ME organizations and supposed (unnamed) experts, which may be why they're planning for a crash after the CPET(s) now:
    I like that they're using objective measurements, though it's not clear if they are primary outcomes:
    They're taking the PACE approach to adverse events, and they're only "serious" if death or long-term disability results. And of course, a colleague of the researchers (one of the unnamed medical advisors) get to decide if it's a reaction to the treatment or not. But non-serious adverse events do get stratified based on severity, which is an improvement:
    Their status update indicates they have recruited 12 out of 30 of the patients they're looking for:
    Who to blame for the funding:
     
  8. Mij

    Mij Senior Member

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    Oh darrn and I thought the project was being funded by XBox.
     
  9. Alvin2

    Alvin2 If humans were rational...

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    Are they on crack?
    i only skimmed it but i think they are desperate to waste money. Perhaps they could spend that cash doing legitimate research :bang-head:
     
  10. Valentijn

    Valentijn Senior Member

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    Pfft, not with a degree from a school of exercise, nutrition, and activity :rolleyes:
     
  11. Alvin2

    Alvin2 If humans were rational...

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    Indeed, i'll rephrase, are they on organic crack? :D
     
    Last edited: Aug 4, 2017
  12. NL93

    NL93 Senior Member

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    LOL! Can you imagine you - as a serious adult- going to a doctor for severe CFS and energy production problems and the doctor seriously being like "I'll prescribe you an Xbox" :lol::cry:
     
  13. Jan

    Jan Senior Member

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    FFS, when will they ever realise you can't exercise your way out of this? Just keep wasting more and more money while ME patients go on dying. Have they heard of SEID?

    This is almost more insulting than PACE, especially the Xbox bribe.
     
  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I tried sending them $0.02 (two cents) through my PayPal account but I don't think the transaction went through. I would have loved to offer my thoughts with my crowdfunding contribution.
    https://www.paypal.com/ca/cgi-bin/w...ture=967bb1350c44e943c5d80a542585c5eb0a349165
     
  15. Alvin2

    Alvin2 If humans were rational...

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  16. JaimeS

    JaimeS Senior Member

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    We need testing done by exercise physiologists! Decent, logical testing.

    I wouldn't be surprised if they find funding. The whole vibe these days is about 'sexy science' that's a cross between quantum theory and magical thinking. Video games solving energetic diseases fits right into the super-sexy model. And it sounds basically like this:



    Very saleable.
     
  17. Jan

    Jan Senior Member

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    Have you got the link for the crowdfunding page?
     
    Luther Blissett and dangermouse like this.
  18. RogerBlack

    RogerBlack Senior Member

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    I wonder if I could get funding for recumbent heart-rate raising low-caloric exercise trial, based on the work of Onan et al.
     
    Luther Blissett likes this.
  19. Hutan

    Hutan Senior Member

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    http://www.researchprotocols.org/2017/8/e117/

    There's a link to donation collections on this page.

    I've just donated US$0.10 in order to find out if there is any way to leave comments. There is only a field to say if you want your donation to be acknowledged and, if so, how. I wrote a message there, but it may well not get seen.

    Probably by the time taxes and fees are added, the cost to the donor will increase quite a bit. I think it would be better to email comments to the researchers directly.

    Here's the contact email given on the research protocols page. Email: katia.ferrar [at] mymail.unisa.edu.au
     
  20. Alvin2

    Alvin2 If humans were rational...

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    You know i'm starting to think all studies should have the cost to conduct them on the last page so we can see if value was received for the money and so we can see how money is wasted in studies like these.
     
    Luther Blissett, Jan, Hutan and 3 others like this.

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