by Sasha Nimmo
Outcomes on the remaining recommendations from the National Health and Medical Research Council (NHMRC) ME and CFS advisory committee are expected to be announced in mid-2019. Prof Anne Kelso CEO NHMRC, is deciding whether to release the report ahead of the announcements.
“The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee Report to the NHMRC Chief Executive Officer was finalised by the end of April 2019 and is now being provided to the NHMRC CEO via our Executive Director and General Manager,” said an NHMRC spokesperson.
In early December 2018 in a meeting with ME Australia, Minister Hunt committed to asking the NHRMC for $6-9 million in biomedical research funding for ME.
In March this year, he announced a $3 million targeted call for research into ME and chronic fatigue syndrome. The NHMRC are currently working on this. The Executive Director of Research Policy and Translation advised this type of targeted call for research can take 10 to 18 months before funding flows.
ME Australia asked if the research would be into biomedical research, and if the research would be required to use specific criteria (such as the International or Canadian Consensus Criteria) to select patient cohorts. The NHMRC said that is unknown yet and they will use the details in the report when developing the targeted call for research.
ME and CFS advisory committee
In 2017 the NHMRC announced the appointment of an advisory committee on Myalgic Encephalomyelitis and chronic fatigue sydrome, including researchers who endorse graded exercise therapy; say patients are in denial about chronic fatigue syndrome having psychological causes and believe it can be cured with five weeks of aquarobics.
The advisory committee’s draft report stated that there was a 99% recovery rate within two years. The NHMRC hasn’t confirmed that this error will be removed from the report, it indicated the report would ‘not change much’ from the draft version, despite large amounts of public interest and input.
Recently, a member of the advisory committee produced a review calling for more biopsychosocial research into ‘chronic fatigue’, a term which the paper used to describe ME/CFS.
4 thoughts on “Research Council expects to fund ME and CFS projects in 2020”
We’re these “researchers” ex-NHS by any chance? So we are basically going to be set back in treatment a few decades. Fantastic. I am a critical care clinician with a pretty good understanding of my own illness, but I haven’t worked for 15 years now. And I can’t afford any more lost time with advisory panels to govt that have no clue what they’re talking about!
In other words it appears there will be nothing new for ME sufferers. Thank goodness I hadn’t raised my teenager’s hopes that she may see some light at the end of the tunnel as a result of this report. The disappointment is crushing.
Disappointing to read where Prof Kelso hasn’t clarified if she will be approving funding for biochemical research. There are plenty of physical abnormalities connected to ME identified by other researchers that could be a springboard for potential treatments.
Thanks for asking the questions, Sasha.