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(Ongoing Australian study) Active video gaming to increase physical activity in adults with CFS/ME

Discussion in 'General ME/CFS News' started by Dolphin, Apr 22, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. A.B.

    A.B. Senior Member

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    The design looks good to this amateur. Sensible primary outcome (measured physical activity over 7 days, at baseline, 6 and 12 monhs), and some objective secondary outcomes. Inclusion criteria require a positive 2 day CPET. Treatment adherence can be checked on the console used to play these videogames.

    However in the end this still seems to be an exercise therapy approach and I doubt it will be effective. It wasn't effective in previous studies, and the reason was probably not lack of fun or motivation which seems to be the strong point of active videogaming. At least this study should produce some decent data.
     
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  3. Valentijn

    Valentijn WE ARE KINA

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    Oh, look at all that nice fraud where Dr. Katia Ferrar fails to mention for the benefit of the ethics committee that ME patients are less active because activity makes us extremely ill, sometimes with a permanent increase in disability. Or maybe she's just incredibly stupid and incompetent.
     
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  4. Deltrus

    Deltrus Senior Member

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    If I am reading this right, they are basically making them use something like the Wii console to give people exercise?

    Obviously exercise is not going to cure anyone with CFS or we would have a lot more reports of people getting cured. Exercise is so common in society that we can draw from anecdotal evidence.

    Oh well I'm a proponent of letting people do their thing, the cream will float to the top over time.
     
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  5. Comet

    Comet I'm Not Imaginary

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    In some ways I agree with you, but unfortunately, the 'time' is our life time.
     
  6. Esther12

    Esther12 Senior Member

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    It is funny watch 'wii' research gradually coming from academia five years after the fad died out.

    Playing a computer game sounds more fun than keeping an activity diary.
     
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  7. A.B.

    A.B. Senior Member

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    The ethics committee has not yet approved the study.

    Also the study was funded by the Mason and Harold Stannett Williams Memorial Foundation. I think they may not realize that further research into exercise therapy (at least of this type) is probably a poor use of resources. Since this foundation is based in Australia, an Australian patient organization might want to contact them.
     
  8. Sea

    Sea Senior Member

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    This...
    http://people.unisa.edu.au/Katia.Ferrar

    "More recently, Dr Ferrar was successful in securing philanthropic funding (Mason Foundation) to investigate the role of active video games in the promotion of physical activity in people with chronic fatigue syndrome, and to investigate the role of the allostatic load."

    ...lead me to looking up allostatic load. It's the new way of blaming everything on the stress response...
    http://eprints.ncrm.ac.uk/2879/1/NCRM_workingpaper_0412.pdf
     
  9. Justin30

    Justin30 Senior Member

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    I am from Canada and I believe regardless of where patients are from we shoud be contacting foundations that are supporting any sort of research into:

    - Exercise
    - overatimulating activities such as video games
    - CBT when placing the demand on the patient to go to a hospital or other centers to perfrm tasks that may be to overstimulating

    I personally sent 2 emails to the Mason Foundation. 1 they replied to and the other they did not.

    It seems that the Mason Foundation was supporting good research the started funding this crap....

    Stop funding and wasting money on research into stuff that does not concern the biological nature of the illness.

    This CBT/GET craps one big waste bin for money....it needs to go
     
  10. Sea

    Sea Senior Member

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    What was their response Justin?
     
  11. taniaaust1

    taniaaust1

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    take care, I wouldnt send too many emails their way unless they are also getting some supportive ones on the fact they are in fact using a better patient group of us then 95% of studies do Inclusion criteria require a positive 2 day CPET .

    This group has over the years been a huge help and they do usually fund biological studies into us (one of Australians 3 major funders of ME/CFS studies maybe our biggest) and we wouldnt want them to go and stop funding us and decide just to focus on Alziemers studies (they fund studies for that patient group and us).

    " is funny watch 'wii' research gradually coming from academia five years after the fad died out."

    maybe i should enrol to this study if Im able to do so as I know I cant play wii long at all, even a minute can cause my body parts being used to hurt so I know this wouldnt help me at all and just show it causing more issues or will show me getting no more fit over time even other months.

    (Ive experimented with exercise in the past.. after 3 months of sticking to exercise to my capabilities I was only able to exercise for 15 seconds more at aerobic level (just around 1 min in total after several months.. so I guess that still would be counted as cant exercise if compared with a normal person eg take those on The Biggest Looser who are running kms at a time after a few months of trying to improve fitness)

    and note, there is a very sick lot of parents in my state that do participate in ME studies... Im saying this as Ive met some of them when participating in other studies over here. So they should get a good patient group ME wise for this study (unless the criteria for not having FM is discluding them). (as unlike England we dont have CBT or GET clinics or that for them to be recruiting people there from).


    We do need more good exercise studies showing that we are not improved by exercise and this study using a good patient group will probably show this.
     
    Last edited: Apr 22, 2016
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  12. taniaaust1

    taniaaust1

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    I just looked at this study and see it's actually an Sth Australian study, so I will be going ahead and trying to enrol as I are in Sth Australia. Ive never had a 2 day CPET test done before so I'd love to know how bad mine will be or even if the POTS will put an end to it before it can trigger of a downfall in my results re the ME next day.

    Can someone over here tell me what I need to convert the phone number given to to phone it as I always get confused by the 61.

    "Australia
    Phone
    +61883022554 "
     
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  13. Justin30

    Justin30 Senior Member

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    They said that they used a panel of medical experts to guide there decision in short and that they were working fairly for the people who donate to the foundation and were not biased against which universities recieved grants.....

    This was with regard to the CBT/GET Video that the UNSW was creating for all Australian ME patients.....I just puked in my mouth a bit....

    Are efforts should be focused less on chatting on forums and more geared to advocacy with whatever energy we have...

    I wish all subforums on PR had Advocacy Anouncements and drefted letter/emails contact info etc.....many are to sick to look at all these sub forums but just might want to send a bit of info to whomever...

    This is my personal take...
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    Can you say more? I am not sure what you mean. The Advocacy sub-forum should have all this information.
     
  15. taniaaust1

    taniaaust1

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    but many ME/CFS patients do need "down time" . We cant be constantly working all the time re in fighting injustices re our illness which is hugely stressful and also does bring crashes to many of us. For me PR represents most of my social life and having some form of social life is important if people dont want to end up spiralling into things like depression.

    I personally dont see anything wrong with this study at this point as some things are better about it then most and we do need geninue non biased studies to help support that exercise in us in harmful or not helpful as most of us know, so this study could turn out to be good. (what makes you think that this one is going to be a biased one?)

    I'll write back if I find they are doing anything which would biased this study eg if they are discluding the more severe group who may still wish to join. (Ive been involved in studies done from the University SA before and so far havent experienced a bad/biased towards ME researcher from there, I dont know this one but I think we shouldnt judging too fast just cause you may not like the study topic.

    So what, her thoughts about this illness are probably wrong right now due to stuff she's read (thou on other hand this one seems well read as she knew to have the 2 day exercise test), well how about allowing her to scientifically get some results with a good patient group herself, she could end up being supportive about exercise is a poor therapy for us.

    As far as Im aware this researcher isnt indoctunated in her views of us and this illlness yet (so all these judgement emails being sent her way could well turn her against us before she does this study. I really wish people would consider this).

    Let people sent her some nice emails thanking her that she is only accepting those who have a poor 2 day exercise test into this study rather then stoking impressions we just go around attacking researchers (which I think is unfortunately going to happen here) who may be trying hard to do the right thing.

    Unfortuately a section of our community is causing new researchers to our field to leave our field. what about unless we know what a researcher is like (eg a known wessely theory schooler), giving them and their study the benefit of the doubt. Let's help guide studies by being positive towards new researchers or otherwise you may end up causing these researchers to dislike us and more likely the biased you were expecting.
    ..................

    and before anyone thinks "this study is taking funding away from other ME/CFS studies.. As far as I know the ME/CFS researchers in Australia who apply for funding are getting their grants from somewhere or another. (all the ME/CFS research groups Im aware of here do currently have research studies on the go.. the group in Queenland, the Adelaide research group has study going, there is currently another ME/CFS study from universtity of Adelaide going on currently).

    I havent heard any of them express that they cant do the study they want due to lack of funding here (sure they may have to fight to get funding but as far as I know these studies are all going ahead. Fortunately we have a couple of good groups doing fundraising for us including the Masons).

    If anyone knows of a ME/CFS study here which isnt going ahead due to lack of funding, let me know..
     
    Last edited: Apr 22, 2016
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  16. BurnA

    BurnA Senior Member

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    This study is nonsense. It's GET in disguise

    What has become of us that we allow this to happen ?

    Maybe we should tell Ron Davis to incorporate Wii as part of the OMF big data study ?
     
  17. BurnA

    BurnA Senior Member

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    I realise you are from Australia and know a lot more than I do about the situation there.

    However, doing some good trials does not excuse doing poor trials. This study in no way benefits the patient community and only leads to the misconception that exercise, or in this case, video games, can cure me cfs.
     
  18. taniaaust1

    taniaaust1

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    Yes its clearly a GET study, I havent heard anyone disputing this is GET.. but what is wrong with properly done GET studies. Aren't we stick of all the biased ones which have had their results tampered with which come out of UK. We need more properly done GET studies to help back what we all say about exercise and it being useless for treating us.

    The more counterance we have re those poor studies the better, we need that till the day comes in which its generally accepted (not just via patients) that exercise dont help us. Doctors and scientists dont just go by our word on things, they need these studies to show what we say.

    How many GET studies do you know in which recruited only those who had a poor 2 day exercise test result? so probably just being done on ME patients rather then the general "CFS" group. This isnt a study being done simply on a group of "fatigued"patients but rather a study being done on a group in which its already been shown have issues with exercise.

    I think its **oh cant think of the word*** , that someone thought up a GET study which is so fun that one wont be able to blame any poor study results on patients not trying or just being lazy etc (sick patients dropping out of other GET studies, the standard kind of GET could be twisted into "just didnt want to exercise"). It should end up showing when patients really want to be doing better and really like the form of GET, that there are still a poor outcome with this.

    Post exertional affects of this illness is a huge part of our illness, so should we be against good studies being done in this area? or would you rather not see this aspect (which helps distinguish our illness from others) not studied at all. A good GET study does study that aspect.

    The ground thing which needs to be understood in our illness is that exercise do not generally help those who have ME. How do you propose this gets generally accepted if not via studies showing this?
     
    Last edited: Apr 22, 2016
  19. taniaaust1

    taniaaust1

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    Only if it comes up showing that. I have faith that this study wont come up showing that due to the patient group being used in it. This isnt UK, patients arent being recruited from fatigue clinics. In fact we dont even have fatigue clinics here as CBT and GET arent therapies used here in SA there is nothing at all of this sort set up in Sth Australia. (and our states society has been very good as in promoting the canadian consensus criteria over the years).

    and of cause good trials do not excuse the bad ones, nothing excuses the bad ones. but they can counterstance the results from bad ones.. its how science ends up balancing itself and in the end the truth comes out. People have such a huge issue with GET that they are missing this fact. Its ONLY with science can previous results be dismissed.
     
    Last edited: Apr 22, 2016
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  20. shannah

    shannah Senior Member

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    If they want to use video games, I think a more valid study would be the effect of video games on quality of life. I'm told by those with ME who play adventure video games, it's a great way to get out of the house!!!:rofl:
     
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