James Coyne: No to video gaming treatment research!

[Merry]

At his blog Quick Thoughts, James Coyne today called on Australian patients to refuse to register for a study using dance and sports video games as treatment for ME/CFS. In a long post he details what is wrong with the study (let's start with the study's premise that exercise is just what ME/CFS patients need!) and ends by urging Australians to boycott not only to protect themselves but to inspire patients in the UK faced with the decision on whether to participate in Esther Crawley's new online CBT study.

Australian patients face a clear challenge and a clear choice whether to participate in this clinical trial. Maybe they can act in a way that inspires the parents of CFS/ME children in the UK to similarly demand involvement before consenting to their children to participate in a clinical trial. Principal Investigator Esther Crawley has given no indication that she will share her data from a new trial of an Internet-based CBT program for adolescents with CFS.

Esther Crawley has a bad history with the patient community. Through the NHS, she inflicted a quack Lightning Process treatment on children and adolescents with CFS/ME in the SMILE trial. Yet, three years after completing the trial, she still has not published the results. But her friend Phil Parker has profited handsomely. Although the UK’s Advertising Standards Authority (ASA) has forbidden him from advertising the Lightning Process as a medical treatment, Parker has received payment for training and providing treatment in a clinical trial. Parker even implied on his promotional website that his treatment was being used in the Northern Ireland NHS – that is, until I alerted a member of the Northern Irish National Assembly Health Committee and the NHS insignia was removed.

 

[bobby]

The fact that they want to use playing computergames as some sort of treatment just shows how little they understand about our illness. The concentration needed to play a video game, and the constant quick visual impulses would drive anyone into crash very soon.

I just looked up what the game is about (if it's the same game James Coyne mentions in his blog - a game called Sports Rivals), and I find it extremely insulting to patients who are victims of an utterly debilitating physical illness.

Kinect Sports Rivals, built for the power of Xbox One, lets you become the champion you were meant to be in an ever-evolving sportscompetition. Instantly create a super you and take on friends, rivals, and the entire world in the events tennis, bowling, soccer, wake racing, target shooting, and climbing.

 

[Merry]

James called these "active" video games, which I understood to mean that players would be standing up and moving about in response to the games. Is that right? I have not played video games (unless a few goes at Pong and Pacman in the late seventies counts).

 

[bobby]

@Merry it does look like it; which makes it even worse!

https://en.wikipedia.org/wiki/Kinect_Sports

The game is a collection of six sports simulations and eight mini-games, designed to demonstrate the motion-sensing capabilities of Kinect. Standing in front of the Kinect sensor, players compete by mimicking actions performed in real-life sports, such as throwing a javelin or kicking a football.

in this video you can see how the game looks, and what you have to in order to play it. it involves a lot of standing up and keeping your hands above your head. true horror for most ME patients.

 

[Merry]

Katia Ferrar, Ashleigh Smith, and Kade Davison are clueless.

 

[Merry]

I like James Coyne's sarcasm:

But then again, saying no would mean I would miss dancin’ up with storm with Kinect Dance Central or being all I can be in the endless competition of Sports Rivals.

 

[Empty]

I had been thinking the same myself. Why aren't UK patients boycotting these ridiculous studies? I think that would be a great idea. If there is no shortage of fatigue patients who are desperate to participate, then it would be good for them to get on board with boycotting it too in the understanding of the unforgiveable harm it is doing to ME/CFS patients.

It would be good in fact for the mental health charities to get on board in fully supporting ME/CFS as a physical not psychological disease that is not in need of CBT/GET.

 

[bobby]

Why aren't UK patients boycotting these ridiculous studies?

I think one of the problems here is that the patients are children. We all know that parents of underaged ME patients are threatened with sanctions from child protective services and thus bullied into taking part in this kind of BS. This happens all around the world and it breaks my heart just to think of what these parents go through. It's inhumane.

 

[Empty]

The fact that they want to use playing computergames as some sort of treatment just shows how little they understand about our illness. The concentration needed to play a video game, and the constant quick visual impulses would drive anyone into crash very soon.

I just looked up what the game is about (if it's the same game James Coyne mentions in his blog - a game called Sports Rivals), and I find it extremely insulting to patients who are victims of an utterly debilitating physical illness.

It is extremely insulting.
That is really hard to watch, all the jerky movements, noise, colour. That in itself is a torture.

Supreme Victory, 1st. What rubbish. (Also rock climbers are not built like that).

 

[Merry]

If patients are coerced into participating in research, doesn't that undercut the validity of the results and call into question the ethics of the researchers and the clinicians?

 

[Empty]

I think one of the problems here is that the patients are children. We all know that parents of underaged ME patients are threatened with sanctions from child protective services and thus bullied into taking part in this kind of BS. This happens all around the world and it breaks my heart just to think of what these parents go through. It's inhumane.

I had thought it was just ignorance, given all the deliberate propaganda and confusion being caused plus a lack of community connection/knowledge.

 

[Empty]

If patients are coerced into participating in research, doesn't that undercut the validity of the results and call into question the ethics of the researchers and the clinicians?

I couldn't help but laugh. 'Ethics'.

This is a way to perhaps get engrossed in the game and do serious damage to the body by way over-doing it. I can see why they have chosen addictive video games as an experiment.

 

[bobby]

If patients are coerced into participating in research, doesn't that undercut the validity of the results and call into question the ethics of the researchers and the clinicians?

it is just wrong on so many levels... Children are so vulnerable to abusers of authority, so these researchers should be extra careful in terms of ethics. I can't help but wonder if the focus of their studies is moving towards children because children are much more moldable than us, all grown up and 'vexatious'.

They weren't able to prove their flawed hypothesis through us, so now they're picking on the most vulnerable. They'll stoop to that level rather than admitting that they had the wrong end of the stick all along.

 

[Merry]

I'm trying to remember what ME/CFS research has been done on children in the UK. I see that a study on the Lightning Process as treatment for young people was published in 2003. Was this in the UK? Another study, SMILE, is going on right now at Bristol University.

Can someone point me to information about parents in the UK being coerced into enrolling their children into ME/CFS research?

 

[bobby]

@Merry

There's the FITNET research (from the Netherlands I think): http://solvecfs.org/recovery-by-internet-cbt-a-closer-look/
The NHS in the UK has just started a follow up study on this (chief investigator Esther Crawley). They got almost a million pounds to do this!: http://www.nets.nihr.ac.uk/projects/hta/14192109

I'm afraid it's very difficult to prove actual coercion, but I think this document from Tymes Trust gives a good idea about what the reality is of being a parent of a child sick with ME.
http://www.meassociation.org.uk/wp-content/uploads/colby_j.pdf

NICE confirms that patients may withdraw from treatment without effects on future care, but parents who decline, or withdraw children from, management regimes, which may have worsened their illness, can find themselves facing investigation for child abuse or neglect, or have their child forcibly confined to a psychiatric unit. Tymes Trust has advised 121 families facing suspicion/investigation. To date, none of these families has been found to be at fault.

 

[Merry]

Thank you, @bobby, for looking up and posting information.

I was aware of the coercion of parents to see that their children followed prescribed treatments. But I had not heard about coercion to participate in research. I'm not saying that it hasn't happened or isn't happening (I have trouble picturing what goes on in clinicians' offices in the UK and how power is imposed -- could be subtle) , but I hadn't heard about it until today, in this thread. Perhaps you could explain to me how patients become research subjects. Is the clinician's office the gateway?

But don't feel obligated to answer. You've probably already used up quite a bit of energy today on this thread alone.

 

[bobby]

Perhaps you could explain to me how patients become research subjects.

I have no idea @Merry ! I just go with what I learn and read online. I imagine it would be really hard to prove anything, but I would expect it to be subtle, as you say. I have read quite a few testimonies from parents (not just in the UK), and it seems that when you threaten them enough with investigation, many of them will do most anything the authority asks of them. But testimonies are no real proof of course...

 

[EYAKLLE]

Retrovirus
It s over for these people
Over

 

[Merry]

I have no idea @Merry ! I just go with what I learn and read online. I imagine it would be really hard to prove anything, but I would expect it to be subtle, as you say. I have read quite a few testimonies from parents (not just in the UK), and it seems that when you threaten them enough with investigation, many of them will do most anything the authority asks of them. But testimonies are no real proof of course...

Sorry to put you on the spot. I obviously have too much time on my hands. You are a good sport, @bobby.

 

[Merry]

Retrovirus
It s over for these people
Over

I hope over.