Pacing, Conventional Physical Activity and Active Video Games to Increase Physical Activity for Adults with ME/CFS: Protocol for a Pilot, 2017, Ferrah

This pilot study will provide essential feasibility and acceptability data which will guide the use of active video games for people with ME/CFS to increase their physical activity levels. Physical activity promotion in this clinical population has been poorly and under-researched, and any exploration of alternative physical activity options for this population is much needed.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5558045/

Abstract
Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious illness of biological origin characterized by profound physical and cognitive exhaustion and postexertion malaise. Pacing is a common strategy used to manage available energy and complete activities of daily living; yet little research has investigated this as a strategy to increase physical activity levels. Typically, people living with ME/CFS are faced by unique barriers to physical activity participation and are less physically active than healthy peers. As such they are at increased risk of physical inactivity–related health consequences. Active video games may be a feasible and acceptable avenue to deliver physical activity intervention by overcoming many of the reported barriers to participation.

Objective
The primary objective of this pilot study is to determine the feasibility and acceptability of active video games to increase physical activity levels of people with ME/CFS. The secondary aims are to explore the preliminary effectiveness of pacing and active video gaming to pacing alone and pacing plus conventional physical activity to increase the physical activity levels of adults with ME/CFS and explore the relationship between physical activity and cumulative inflammatory load (allostatic load).

Methods
This study will use a mixed method design, with a 3-arm pilot randomized controlled trial, exit interviews, and collection of feasibility and process data. A total of 30 adults with ME/CFS will be randomized to receive either (1) pacing, (2) pacing and conventional physical activity, or (3) pacing and active video gaming. The intervention duration will be 6 months, and participants will be followed up for 6 months postintervention completion. The intervention will be conducted in the participant’s home, and activity intensity will be determined by continuously monitored heart rate and ratings of perceived exertion. Feasibility and acceptability and process data will be collected during and at the end of the intervention. Health-related outcomes (eg, physical activity, blood samples, quality of life, and functioning) will be collected at baseline, end of intervention, and 6 months after intervention completion.

Results
This protocol was developed after 6 months of extensive stakeholder and community consultation. Enrollment began in January 2017; as of publication, 12 participants were enrolled. Baseline testing is scheduled to commence in mid-2017.

Conclusions
This pilot study will provide essential feasibility and acceptability data which will guide the use of active video games for people with ME/CFS to increase their physical activity levels. Physical activity promotion in this clinical population has been poorly and under-researched, and any exploration of alternative physical activity options for this population is much needed.

 

Some, like me, can't handle the cognitive load of things like candy crush, let alone angry birds, or more complex things.

Like at all, a few minutes and it's pointless crash time.

So I cannot see how this could be a useful therapy.

 

Watching the US Open gives me PEM after 30 minutes.

 

I found this. They have provided contact information for public queries:

https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370224

 

When you know the words but just straight up don't understand them at all, did not even attempt to understand what they mean. This isn't even hard, even the basic stuff is so badly mishandled, it's pathetic.

Again, everything is framing the issue being about motivation. Ignorant jerks. They don't know a damn thing about any of this and they want to affect millions of lives without a care in the world about what happens once they're done.

 

If I recall correctly, the original research proposal was to study whether playing video games would help patients forget about their 'imaginary' symptoms so that they could exercise more.

ME/CFS South Australia informed them that this was a terrible idea and tried very hard to educate them about the realities of ME/CFS and PEM. I believe they pushed to modify the proposal to evaluate pacing using heat-rate monitoring.

The volunteers at ME/CFS SA are all quite unwell themselves and I understand they put a lot of effort into educating this team and improving the design of this study.

 

After all these years they still do not realise that our problem is we keep doing too much. A phone app to remind us to stop what we are doing and have a rest would be more appropriate.

 

I've heard very little about this beyond the criticism when the study was first announced.

 

A very brief glance at the Results and Conclusions and the thought occurs that they perhaps they're trying to leave this "study" behind/forget about it ---

 

I made comments of concern about this study some years back, maybe 2017. I was concerned they could harm some of the participants. I play video games every day, but none involve moving more than my fingers and my eyes. Though you can add the muscles involved in speech if I am on discord.

I have never noticed any kind of conditioning of my brain involved. I do indeed sometimes ignore my symptoms as I get caught up in the games, then I get wiped out. I rate games, along with a friend of mine, on how long I can play them. I think two are rated at six hours for marathon sessions, pretty well rare events, but are usually three hours. The worst games I can play for seconds to minutes. Its about selecting low cognitive impact games (for you and your needs). The more physical it gets the harder and faster I crash. A patient like me could be severely injured by an active video game.

ETA Any game that raises my adrenaline causes a crash in minutes.