• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

New breakthrough research: video games to activate people with ME

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I am an ardent video gamer, but I am forced to avoid video games that involve any adrenaline, or too much physical activity, and even the very low activity games I have to pace.

Yes, I love games but in early stages of illness had to give them up entirely. They elevated my HR and sympathetic activity in general, made my hands and arms ache and burn, and burnt out what little capacity I had for higher thinking. In short, they exhausted / crashed me.

Now I can play some, but like all stuff with this disease, it's management. HR goes up too high or for too long and I do something very low-key to get it back to the right place. Early in the disease, no amount of chilling out would have helped; HR would have stayed elevated for hours or even days.

The other problem is that at the mild end of the severity spectrum ME patients are not less active than sedentary controls. They just operate in short bursts, and have to rest between bursts. I think this showed up in some actometer study many years ago.

Yes! In my job at the lab I walk more steps than the average citizen. But it's in short bursts of activity followed by rest. I sometimes stay 10-12 hours and have two hours of basically doing nothing in the middle.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Anything with a 'timer' on makes my HR go up, even jigsaw puzzles.
I tend to play action RPG stealth games, or building games. Mostly doing nothing, or sneaking around, or scouting before very brief action. I also play slow strategy games, though typically 4x games. So the vast majority of the time is a quiet game session. Extended activity or action, etc, always crashes me.

Kinect games involve whole body movement. I can forsee patients doing that more and more under advice, and doing everything else less and less to compensate. Actometers and a final 2 day CPET would help identify these issues.
 
Messages
30
This study has been massively improved as a result of the authors working with ME/CFS advocates and patients. The funding was already granted when the ME/CFS community became involved and so ditching the xbox and allostatic was never an option, but the authors have added in a lot of objective measures. It is a pretty good study and we desperately need our response to exertion/exercise to be quantified and to be studied. It is nothing like the UK PACE/GETSET/MAGENTA trials. The choice of exercise is at odds with exercise physiologists who recommend strength and flexibility and NO aerobic.
 
Messages
30
It will depend on how ill someone is and you need to be able to do 5 min of screen time without adverse effects to be included plus be able to do 5 min of exercise without adverse effects.
 
Last edited by a moderator:

A.B.

Senior Member
Messages
3,780
This study has been massively improved as a result of the authors working with ME/CFS advocates and patients. The funding was already granted when the ME/CFS community became involved and so ditching the xbox and allostatic was never an option, but the authors have added in a lot of objective measures. It is a pretty good study and we desperately need our response to exertion/exercise to be quantified and to be studied. It is nothing like the UK PACE/GETSET/MAGENTA trials. The choice of exercise is at odds with exercise physiologists who recommend strength and flexibility and NO aerobic.

The authors did genuinely try to improve the study after listening to feedback. The rationale behind the study is not good however and tells us the authors have views on ME/CFS that are based on the discredited idea that deconditioning is the problem.

Given that misdiagnosis is common due to widespread ignorance, and given that ME/CFS is defined by exertion intollerance, this study risks enrolling misdiagnosed patients that don't have exertion intollerance. The conclusions will then of course be applied to all ME/CFS patients.

The study could still provide very useful information. Maybe it will finally demonstrate the exertion intollerance in the setting of exercise therapy. I fear though that the authors won't be able to prevent their expectations from distorting the interpretation and reporting. The expectation that exercise is useful is based in part on the fraudulent PACE trial. An investigator professionally invested in exercise therapy might find it difficult to accept a null result when others have seemingly gotten decent results...
 
Last edited:
Messages
15,786
It is a pretty good study and we desperately need our response to exertion/exercise to be quantified and to be studied.
Except that it doesn't require PEM, so it's not an ME/CFS study. Yet any positive results will undoubtedly be applied to ME/CFS. They don't know what they're studying, and that makes this project completely useless.

The rationale behind the study is not good however and tells us the authors have views on ME/CFS that are based on the discredited idea that deconditioning is the problem.
And that we're too stupid and/or crazy to realize we're deconditioned and do anything about it.
 

Skycloud

Senior Member
Messages
508
Location
UK
Video games. Not my idea of fun.

This study is going ahead whatever we think of it. I hope they report their findings honestly, and don't make false claims. That would make a refreshing change.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,984
This study has been massively improved as a result of the authors working with ME/CFS advocates and patients. The funding was already granted when the ME/CFS community became involved and so ditching the xbox and allostatic was never an option, but the authors have added in a lot of objective measures. It is a pretty good study and we desperately need our response to exertion/exercise to be quantified and to be studied. It is nothing like the UK PACE/GETSET/MAGENTA trials. The choice of exercise is at odds with exercise physiologists who recommend strength and flexibility and NO aerobic.
When a group has been unfairly maligned its hard to consider a bad faith effort as objective, even if some improvements have been made.