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 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 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
by Sasha Nimmo Write to the University of NSW and ask them not to allow this trial to proceed: contact the ethics department via email: email@example.com, firstname.lastname@example.org and the study's contact email@example.com . You may wish to also contact the administrator of the Mason Foundation, who are funding the work, firstname.lastname@example.org There is a proposed study/trial starting in 2016 … Continue reading Ask UNSW to cancel CBT/GET training chronic fatigue syndrome study
by Sasha Nimmo In a radio interview with The Wire, Senator Scott Ludlam says Australia shouldn’t be funding research into totally inappropriate exercise regimes or therapy, “these remedies are actually counter-productive and dangerous”. The Wire, an Australian community radio current affairs program, also interviewed Emerge Australia’s president, Sally Missing, and ME patient Sasha Nimmo. The … Continue reading Australia shouldn’t fund ‘totally inappropriate’ CBT and GET
by Sasha Nimmo Senator asks medical research council about ‘remarkably small amount of funding since 2000’ and if they are funding graded exercise therapy (GET) or cognitive behavioural therapy (CBT) for ME and chronic fatigue syndrome. This is the third article in the series. Here is the first (November 2015) and the second (February 2016) Australia … Continue reading Australian Health Department pins its hopes on overseas research instead of funding our own
by Sasha Nimmo Large controversial UK study refusing to release data: PACE trial The authors of a £5 million trial into cognitive behavior therapy and graded exercise therapy again refused to release the data to scientists who wanted to examine it. The Queen Mary University of London believe it to be exempt from Freedom of … Continue reading UK study refuses to release data: PACE trial