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

[BurnA]

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.

Public title :Active video gaming to increase physical activity in adults with chronic fatigue syndrome
Scientific title : Active video gaming to increase physical activity in adults with chronic fatigue syndrome/myalgic encephalomyelitis

The purpose is clearly to increase physical activity, not to demonstrate the exercise is bad.

(BTW Anyone else find it odd that the public title not include myalgic encephalomyelitits ?)

People have such a huge issue with GET that they are missing this fact. Its ONLY with science can previous results be dismissed.

You are right Science will dismiss PACE, but not necessarily by repeating Pace-like trials, rather by analysis of the trial itself, by the likes of Tuller, Kindlon and Goldin.
Remember any trial which shows GET is ineffective will only be buried / ignored by those who don't want to believe it.
The only way to remove GET from our lives is to dismantle the PACE trial and/or by finding a biomarker.

but what is wrong with properly done GET studies

There is no place for GET in the treatment of ME/CFS that is what is wrong with them.

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?

This study is not about PEM from what i can see, but no, I am not against a good PEM study which would look for biomarkers in a patient during a PEM time period. I think that would be a wonderful trial. Lets not confuse that with a GET study though.

I do not see any benefit to this trial taking place.

How insane is the idea that we can video-game our way to health ?

 

[Richard7]

@Woolie @A.B.

from the trial registration

allostatic load measured using a composite index score with measures taken from venous blood (insulin, glucose, cholesterol, triglycerides, C - reactive protein, cortisol and Interleukin-6)

 

[BurnA]

The Mason foundation though they funded the NK Study that just came out has just turned around and is now funding 2 studies:

• The study in the the thread
• The study from UNSW on a training video on how to guide payients through CBT/GET

Andrew Lloyd ?

Interviewing Prof Andrew Lloyd last year for this story, he explained he was working on an online program of graded exercise therapy (GET) and cognitive behavior therapy (CBT) program at the University of NSW’s Fatigue Clinic.

Prof Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably solid data”.

The University of NSW has now registered a trial to ‘investigate the efficacy of online continuing education for health professionals to improve the management of chronic fatigue syndrome’.

The study is designed to educate medical professionals. Prof Lloyd said it would ‘protocolise the intervention’ and that he had a grant to turn into an online module and evaluate it.

The study isn’t evaluating CBT and GET, it already accepts those as “widely acknowledged as best-practice interventions for CFS”, it is training health professionals in:

1. Psychoeducation;
2. Activity pacing and graded exercise therapy;
3. Interventions for sleep-wake cycle disturbance;
4. Interventions of neurocognitive functioning in CFS;
5. Interventions for mood disturbance;
6. Interventions for anxiety;
7. Interventions for coping.

This study is funded by the Mason Foundation.

 

[Justin30]

Andrew Lloyd ?

Yes. Thats the one...

 

[BurnA]

They have funded great ME studies for a very very long time (this is why Im saying that people need to take care as we wouldnt want to damage them funding studies on this).

@taniaaust1 i understand your dilemma, but we shouldn't accept poor studies. If we accept this without objection then there will be more and more like this and then all of a sudden they have stopped funding biomedical studies and are only funding tooth fairy ones. (thanks @A.B. )

 

[Richard7]

rereading the registration details it is clear that they are only taking three sets of measurements.

One at baseline one at 6 months and one at a year. This makes a lot of sense if you have an intervention and want to show people's progress. Which is I guess the aim, and a shame.

Just three measures of blood chemistry, three measures of heart rate variability, three readings of blood pressure and heart rate, in a condition that varies not just day to day but hour to hour.

The technology exists to measure heart rate and activity continuously, and you can add in estimates of sleep quality etc as a bonus. Why not use it?

Measuring the activity and blood chemistry of people with CFS for a year may have been interesting. More so still if you included reports of events that the activity meters would not get such as financial issues and conflict with carers/ neighbours etc.

But this does not really look good. If you are going to put people through the two day exercise test, and risk some pretty appalling outcomes you need to go as far or further to offer them an experiment that collects every possible bit of useful data and offers results that are worth the risk.

 

[Justin30]

True science does not take a disease touted to degrade life more than congestive heart failure, MS, Cancer, Diabetes, etc.

Then subject them to activities or exercion know to cause transient or permanent degredation in health and to only test a handful of minor quite common factors.....

Its insanity..... I can see doing this if you are part of the NIH study where so much is tested...where they are looking at getting to the cause...

What does gaming do make you over exert in 2 ways physically and mentally.....not to mention overstimulation from flickering lights rapid movements that could induce siezures....remember people talking about exitotoxicity....noise and light sensitivities...

The more i think about it the more rediculous I find this study to be.....enough with GET....

Research investments need to be geared at analyzing biological samples in relation to controls to find clear identifiable difference....

IOM information should be used...proper CCC/ICC Cohorts selected and not be subjected to CPETS unless they are being tested for everything under the sun or something radical that has not been looked at before.....glucose and insulin dont cut it in my mind....

Its not in the best interest of all the people that can no longer leave their beds because GET is still being used and studied....as a research and a treatment modality

GET Research, treatment and practice...represents true insanity....which is doing the same things over and over again expecting different results....

If you were to propose such a research study in any other disease with a high degree of comorbidity you would be laughed out of the room....

The Mason Foundation needs to know that until proven otherwise....what we know is that excercise can hurt people with ME.....

had i know this and didnt see conflicting views about exercise and getting better...i would not have exercised because I am worse off now because of so much confusion through online resources...what Drs said to me, etc....

I'm done

 

[Richard7]

I really do wonder just what researcher thinks it is that makes this experiment worthwhile.

To someone who believes GET to be the most effective therapy for CFS is the selling point the fun of playing the wii? Do they think it is like the second stomache effect (you know the way people who are full can find extra room for ice cream or chocolates) "These patients don't like normal activity so we got the working with FunActivityTM"

Or is the selling point in the biochemistry?

 

[BurnA]

The Mason Foundation needs to know that until proven otherwise....what we know is that excercise can hurt people with ME.....

Yes. Instead of individuals writing letters and emails, is there any representative body who could do this ?

 

[Valentijn]

I really do wonder just what researcher thinks it is that makes this experiment worthwhile.

To someone who believes GET to be the most effective therapy for CFS is the selling point the fun of playing the wii?

It seems like a fairly common theme in the British model of CBT/GET. Basically they believe that we magically generate more energy when doing fun activities, and only dull chores drain us. They don't have any basis for that belief ... it's just part of the dogma of their CBT cult.

 

[Richard7]

Justin30,

I too really regret all the exercise I did trying to get better. Indeed I don't think there has been an activity that caused PEM that was worth the PEM, and really wish people (physio and family) would stop encouraging me to exercise, or better still advise me to stop when I am clearly doing too much.

@Valentijn

And to think that when I woke up this morning all I wanted to do was sit on the kitchen floor (POTS) and sort out the cupboard under the sink. I have never used a wii, and have not played a computer game in ... well ... um …. I can remember playing Doom some time in the mid 90s, I think I have only played a dozen games and that's including solitare.

I always preferred books. And art galleries: to walk around an art gallery ahhh that would be wonderful. And of course bushwalking [hiking] and swimming.

 

[Justin30]

Yes. Instead of individuals writing letters and emails, is there any representative body who could do this ?

MEAction could draft something similar to this:

http://www.meaction.net/2016/04/15/keep-pace-out-of-webmd-and-healthday/

It would be more effective if an organization reached out to them though or possibly one of the larger working groups.

I truly feel we need more of a global stance on all research that could potentially harm patients unless it is well justified....

I dont know if one exists but a global working group or committee would be great to have in tackling all these matters...

Mason Foundation has funded good studies from what I have seen but is vearing to CBT/GET studies as of late...

 

[Justin30]

I just plain old miss overdoing it physically...i want to be fixed....

I miss hiking, fishing, playing ice hockey, going to the gym, socializing....

And even working....

I know life isnt fair and many are robbed so young of full lives....

But with this clear cut epedemic its time to fund only biological research....

I would rather know that I have a permanent encephalopathy at this point then to be given a treatment such as GET when....

Know one even knows the biological mechanism that dysregulates, damages and ravages our bodies....when we push ourselves

LIKE I SAID INSANE

 

[BurnA]

We need to stop this madness. Another one, not sure if discussed already...

A randomised controlled trial investigating the efficacy of online continuing education for health professionals to improve the management of Chronic Fatigue Syndrome (CFS).

ASK UNSW TO CANCEL CBT/GET TRAINING STUDY

 

[msf]

What a stupid study. They might as well have played computer games themselves, more good would come of that, at least they wouldn´t have come up with anymore stupid ideas for a while.

 

[BurnA]

MEAction could draft something similar to this:

It seems MEAustralia.net have a page dedicated to stopping this nonsense.
There is no way to contact them on their website, i would be happy to copy their content into an MEAction action but would rather get permission first.

ETA I decided to submit the details of their page to MEAction

 

[BurnA]

We need to stop this madness. Another one, not sure if discussed already...

A randomised controlled trial investigating the efficacy of online continuing education for health professionals to improve the management of Chronic Fatigue Syndrome (CFS).

ASK UNSW TO CANCEL CBT/GET TRAINING STUDY

The more I think about this study the angrier I get.

This trial is
"A randomised controlled trial investigating the efficacy of online continuing education for health professionals to improve the management of Chronic Fatigue Syndrome (CFS)."

However it just so happens that all the training material is 100% BPS.

So they are purporting to look at how online training can help improve the management of Chronic Fatigue Syndrome but they are actually training healthcare professionals into the BPS model.

 

[panckage]

I started to really play video games a few months ago. My results: It was fun but I found it just used up energy from my 'energy bank.' I had to pace my gaming because it was taking energy that I would have otherwise used to to do other things. The one benefit though, is that it was good for my posture. I found I sat with good posture while playing and so it had some strengthening effect. Although some times I couldn't sit up properly due to lack of energy. This was good evidence that I should stop playing... usually

So end result
*minor positive strengthening effect
*improved my mood
*no help for energy (I need real exercise for that!)

 

[BurnA]

I started to really play video games a few months ago. My results: It was fun but I found it just used up energy from my 'energy bank.' I had to pace my gaming because it was taking energy that I would have otherwise used to to do other things. The one benefit though, is that it was good for my posture. I found I sat with good posture while playing and so it had some strengthening effect. Although some times I couldn't sit up properly due to lack of energy. This was good evidence that I should stop playing... usually

So end result
*minor positive strengthening effect
*improved my mood
*no help for energy (I need real exercise for that!)

I think this sums up exactly what they will find in their study.

It's not like we are all suddenly going to have more energy, the participants will just use their energy playing games.
The premise of this trial is that we need fun ways to help motivate us into doing things.

One side effect of this could be that people who have light sensitivities could suffer if having to watch a screen for long periods is a requirement. I wonder how the trial investigators would document that one, eh participants eyes were too lazy to watch the screen.
Did you have any problem with that @panckage ?

 

[A.B.]

It's not like we are all suddenly going to have more energy, the participants will just use their energy playing games.
The premise of this trial is that we need fun ways to help motivate us into doing things.

They still see it as mood disorder, rather than metabolic disorder.