Mason Foundation explores ME and CFS biobank for Australia

Proposed Mason Foundation research scheme diagram, listing the precentage of where money may go. Details in article.

By Sasha Nimmo Most of Australia's medical research funding for ME and CFS comes from the Mason Foundation, who are currently looking at whether they will fund a biobank or a patient registry for Myalgic Encephalomyelitis and/or chronic fatigue syndrome samples.  Last week the Mason Foundation updated stakeholders on the decision-making process. This is important … Continue reading Mason Foundation explores ME and CFS biobank for Australia

Global petition: xBox dance and sports video gaming to increase activity in CFS

screenshot of petition on MEAction - 'Stop dangerous and unscientific xbox study in South Australia' and picture of video game being used by a woman with her back to us

By Sasha Nimmo People are protesting the University of South Australia's study 'A pilot study exploring pacing to increase physical activity: Is active video gaming a feasible and acceptable strategy for adults with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)?', join them and sign the petition to protest against poor quality science now. The petition is … Continue reading Global petition: xBox dance and sports video gaming to increase activity in CFS

Response from the Mason Foundation: Petition to stop graded exercise therapy trial

man lying down eye closed

More than 700 people signed the petition to ask the Mason Foundation and the University of New South Wales (UNSW) to cease the trial of graded exercise therapy for chronic fatigue syndrome, in the face of newly-released evidence from the PACE trial (which UNSW relied upon in this trial). "We are deeply concerned that your trial, UN1111-1180-1073, … Continue reading Response from the Mason Foundation: Petition to stop graded exercise therapy trial

University of NSW tests graded activity program on mild chronic fatigue syndrome patients

by Sasha Nimmo Australia's University of NSW's Psychiatry Department tested a graded activity program on 25 patients with chronic fatigue syndrome, despite the evidence of harm. Before the study, patients could complete around 4 hours of 'moderate intensity exercise' a week (self-reported) which is an unusually high amount for CFS patients. Exercise was not measured or recorded at … Continue reading University of NSW tests graded activity program on mild chronic fatigue syndrome patients

How the UNSW chronic fatigue syndrome studies use ‘potentially harmful’ guidelines

by Sasha Nimmo 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 … Continue reading How the UNSW chronic fatigue syndrome studies use ‘potentially harmful’ guidelines