Australia’s chronic fatigue syndrome patients left without support, tiny amount on research.
Wednesday night’s Senate Estimate hearings show that sadly people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are still being left behind. The Department of Health revised their figures downward, from $2.4 million to a tiny $1.6 million spent on two studies and two fellowships since 2000.
Up to 242,000 Australians have ME/CFS and some are severely ill, unable to leave their bedroom or home and requiring help with daily activities of life.
The Health Department was asked about why there is no federal funding for support of people with the condition, advice about medical treatments, train medical and allied health staff and disseminate information. They’ve taken the question on notice and we look forward to the answer.
“People with ME/CFS are entitled to better support, care and respect and that the lack of good quality research needs to be challenged,” said Sally Missing President of Emerge Australia.
“We believe that funding should go towards biomedical research which is uncovering important new findings. There is no good evidence to support the use of graded exercise therapy or cognitive behaviour therapy and there is important emerging evidence on genetic and immune markers for the condition, so we ask the Department of Health not to waste precious research dollars on those studies”.
“We would like to see fair and equitable allocation of resourcing for ongoing research, collaboration and shared learning among those best placed and equipped to undertake this vital work,” said Ms Missing.
Professor Kelso, NHMRC’s CEO, said she has been discussing the importance of research for this illness with the director of the USA’s National Institutes of Health (Dr Francis Collins). Prof Kelso repeated Dr Collins saying: “it is time for a significant effort to understand it”.
“At Emerge Australia, we believe it is not only time to better understand the condition, it is time to find a treatment that works,” said Ms Missing. “People with ME/CFS are grateful to Senator Ludlam for raising these important matters. We hope that the Department of Health and the NHMRC will work with us to improve the situation.”