Story by Sasha Nimmo in MEAction. (A view from Australia).
Most of the $2.4 million in research the government says is for ME or CFS is spent on research into psychology, exercise or for other conditions such as hepatitis C. No studies funded in a decade.
For Australia’s 94,000 people with ME, or possibly up to 242,000 including CFS, the Australian Department of Health directly funded just three studies into ME or CFS in 16 years, two studies led by psychologists and one on Gulf War veterans. Funding for those studies finished in 2005.
Senator Scott Ludlam asked questions at a Budget Estimates hearing at Parliament House last year after learning how little is known at the diagnostic level and how people were left unassisted to deal with the illness. The senator said Estimates hearings were a good opportunity to question senior health bureaucrats and government representatives face-to-face.
“I looked at Hansard and it appears it has never been raised before. It might as well be invisible,” Ludlam said.
Australia’s National Health and Medical Research Council (NHMRC) took two of the senator’s questions ‘on notice’, as the NHMRC had been unable to answer them at the hearing. The first question on notice was what sort of research is being funded for Myalgic Encephalomyelitis, which may be known as chronic fatigue syndrome.
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