Australian government seeking expert advice on ME and CFS research grants

Prof Anne Kelso, CEO NHMRC sitting at desk at Senate estimates hearing

by Sasha Nimmo Senator Scott Ludlam asked about the progress of proposals to research ME and CFS at last night's budget estimates hearing in Parliament House, Canberra. Prof Anne Kelso, CEO of Australia's National Health and Medical Research Council (NHMRC), said she was delighted to hear of the important advance made by Griffith University but explained they may not … Continue reading Australian government seeking expert advice on ME and CFS research grants

Alem Matthees: how an Australian’s FOI request busted open a UK science scandal

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

Severe ME: ‘Took nearly 40 years to be diagnosed’

Basil the miniature fox terrier

by Sasha Nimmo Between 24,000 - 60,000 Australians have severe ME.  This is the first in a series telling the stories of Australians with severe ME. Given the wrong medical treatment and intervention harmed this patient's health to the point of no return. Disbelief by medical professionals and community care workers made life even more difficult. … Continue reading Severe ME: ‘Took nearly 40 years to be diagnosed’

Australian trial of mitochondrial treatments for chronic fatigue syndrome

by Sasha Nimmo Melbourne scientists are testing a combination of mitochondrial supplements on 8 or 9 patients with chronic fatigue syndrome (Fukuda criteria). The 20-week study for patients with Fukuda chronic fatigue syndrome is open-label, so patients are aware they are receiving the treatment and there is no placebo group.  Participants take the capsules daily, as well as medical … Continue reading Australian trial of mitochondrial treatments for chronic fatigue syndrome

New study: review of drugs for chronic fatigue syndrome and ME

red and yellow pill capsules

by Sasha Nimmo Australian scientists looked at 26 studies on drug therapy for chronic fatigue syndrome symptoms and found no recommended pharmaceuticals.  The study looked at the English-language archives of Ovid MEDLINE, EMBASE and PubMed. Just 26 studies were considered suitable for review and only 13 'reported statistically significant results'. The scientists only reviewed randomised, placebo-controlled trials. "...despite … Continue reading New study: review of drugs for chronic fatigue syndrome and ME

Facts and figures on M.E. in Australia

by Sasha Nimmo Up to 240,000 Australians have Myalgic Encephalomyelitis. ME may be mild, moderate or severe. More than 25% of people affected are housebound or bedbound, and research shows that people with severe ME have a quality of life similar to those with cancer and late-stage AIDS. Worsening of symptoms can be sudden and permanent. One … Continue reading Facts and figures on M.E. in Australia

Ask UNSW to cancel CBT/GET training chronic fatigue syndrome study

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: ted.rohr@unsw.edu.au, humanethics@unsw.edu.au and the study's contact s.h.li@unsw.edu.au . You may wish to also contact the administrator of the Mason Foundation, who are funding the work, charities@eqt.com.au  There is a proposed study/trial starting in 2016 … Continue reading Ask UNSW to cancel CBT/GET training chronic fatigue syndrome study