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ME/CFS AUSTRALIA (SA) INC

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Why Patients Should Not Enroll In A Clinical Trial Of Video Gaming Treatment For Chronic Fatigue Syndrome

Friday 8 September 2017

 

From James C Coyne's blog Quick Thoughts:

 

James C Coyne
James C Coyne
 

Why patients should not enroll in a clinical trial of video gaming treatment for chronic fatigue syndrome

By James C Coyne
June 4, 2017

If I were a patient with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), I would not consent to be in a clinical trial of active video gaming for adults. I would consider withdrawing my consent if I had already provided it.

Either decision would be within my rights. I would be acting for myself, but also out of concern for the patient community.

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.

  • Enrollment has begun for a clinical trial evaluating a treatment for chronic fatigue syndrome, but important details that should have been set remained ill-defined.
  • The trial is scientifically unsound, likely to contribute misinformation to the existing scientific literature, and has unresolved safety concerns. Recruitment began without patients having had an adequate say.
  • Participation in a clinical trial is not a responsibility that patients must accept. It’s a choice, a gift from them. Consenting to being in a clinical trial often involves patients assuming considerable burden with the hope that their participation will benefit others. Under the Declaration of Helsinki, patients can only be enrolled in clinical trials with their fully informed consent based on full consideration of risks and benefits.
  • Patients need to understand their basic rights and insist on active participation in the planning and design of clinical trials, as well as the analysis, interpretation and dissemination of results. Patients need to be prepared to refuse to consent to a clinical trial or to leave one when these conditions are not met.

An interview with the trial’s principal investigator is here. It raised serious concerns.

 

Full article…

 


 

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