by Sasha Nimmo Senior staff from Australia's National Disability Insurance Agency (NDIA) met with Emerge Australia and ME Australia to see how they can better support people who have ME and CFS. Encouragingly, this seems to be the start of a more broad consultation approach. At the meeting, we discussed access to the scheme, how permanent … Continue reading Disability agency consults on ME and CFS
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
UNSW deny Prof Lloyd's CBT/GET trial causes harm to participants and refuses to stop the trial or amend it in any way. The university says the people who are protesting 'harbour resentment against the notion that CFS may have psychological causes', plus continues to defend the PACE trial.
UNSW graded exercise therapy trial under investigation after a petition signed by 702 people asked them to halt harmful treatment.
We asked them to stop the trial and they said 'no'. Australia's Health Minister responds to our petition asking them to cease graded exercise trial on chronic fatigue syndrome patients at UNSW.
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
by Sasha Nimmo In September 2016, Queen Mary University of London (QMUL) was compelled to release the data from the 2011 PACE trial, a trial which examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care. West Australian Alem Matthees was one of many people who wanted a closer look … Continue reading Alem Matthees: how an Australian’s FOI request busted open a UK science scandal
The Australian federal government is spending the ME and CFS research budget on training medical professionals to use cognitive behavioural therapy and graded exercise therapy on patients in Australia and internationally, despite the fact these therapies show no benefit and may do harm.
by Sasha Nimmo Update 3 September: In June I asked South Australia's ME/CFS Australia (SA) if they were recruiting patients (as indicated by Dr Ferrar), if they have decided to endorse the study yet, what was their opinion on the study not using any criteria (i.e. Fukuda or International Consensus Criteria) and which criteria the organisation endorsed. I also asked … Continue reading Uni of South Australia Xbox ‘increasing activity’ trial claims it has patient support
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