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 open to everyone around the world.
The petition asks the University stop their trial on a “strategy to increase physical activity levels in adults with CFS/ME” and for the South Australian state MECFS organisation to stop endorsing the study and recruiting patients for it because:
– the risk of harm is not adequately addressed
– the study does not have a set criteria, and diagnostic uncertainty renders the study worthless especially as 2 in 5 patients are misdiagnosed with chronic fatigue syndrome in Australia
– the small size of trial and it’s design render it unscientific
– this “lifestyle intervention” study will not add to understanding of the illness
The lead investigator, Dr Ferrar, demonstrates a lack of understanding of the cellular and muscle problems in people with chronic fatigue syndrome and ME, as she said there is “indisputable research concerning the health benefits of physical activity” when asked about graded exercise therapy. Read the interview with Dr Ferrar and SA MECFS society.
This study promotes further prejudice against people diagnosed with chronic fatigue syndrome and ME. It furthers the belief that exercise can improve people with chronic fatigue syndrome, ignoring expert metabolic and immune evidence as well as recent medical literature.
The study is funded by the Mason Foundation, who also funded the University of New South Wales trial of a training module of graded exercise therapy (CBT) and cognitive behaviour therapy (GET) for health professionals. More than 700 people petitioned the University to stop.
The Mason Foundation also fund biomedical research so it is important that limited funding available goes towards sound scientific research, instead of being wasted.