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.
The NHMRC’s answer:
“Since 2000, the National Health and Medical Research Council (NHMRC) provided funding for Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) research totaling approximately $2.4 million. During that time, 22 applications seeking ME/CFS funding were submitted to NHMRC. Of these, six applications (27 per cent) were awarded funding. The majority of funded research has been/is focused on the clinical diagnosis and treatment of ME/CFS.”
According the NHMRC website, funding in 2000 to 2014 was given to:
- ‘Depression, anxiety and somatic distress: syndromal structure and relationship to onset of clinical disorder’ (or the ‘simplified’ title the researchers offer is “Prediction of episodes of emotional disorder”), led by Prof Peter Lovibond at University of NSW ($224,000)
- ‘A prospective study of the psychiatric & medical characteristics of post-infective fatigue & chronic fatigue syndrome’, (simplified title “Do some chronic fatigue states result directly from infectious illnesses?”), led by Prof Ian Hickie at University of NSW ($500,000)
- ‘Respiratory and neurological health, symptoms and chronic fatigue syndrome in Australian Gulf War veterans’, led by Dr Helen Kelsall at Monash University ($58,000) [according the Australian War Memorial, 1800 Australians were deployed]
- Three five-year fellowships at the University of NSW, two for Prof Andrew Lloyd ($1,065,000) and Assoc Prof Janet Taylor ($559,560)
Talking to researchers about their fellowships from the NHMRC shows a large portion of this funding is actually going to research on conditions other than ME or CFS. Associate Professor Janet Taylor, who received $559,560, said her research is about the role of the nervous system in exercise-related fatigue, she primarily works with healthy volunteers and has “actually done very little work on ME or CFS”. Professor Andrew Lloyd said “ninety percent of my work has nothing to do with CFS, it is mostly hepatitis C,” said.
Other CFS research Lloyd is working on is an online program of graded exercise therapy and cognitive behavior therapy program at the University of NSW’s Fatigue Clinic. Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably solid data”.
Lloyd, who sits on the grant review committees for the NHMRC, also suggested the government should fund international consortiums doing big studies. “The field needs large-scale, high-level, multi-disciplinary studies. Genes predispose people [to the illness] so the best way is a genome-wide association study, with 5,000 well-characterised group of patients and 5,000 controls.”
After reviewing the NHMRC answer Ludlam said “ME needs much more targeted research to give people guidance on what they have. It is scary to have wide sets of symptoms and it feels like sustained research could help”.
Ludlam also asked, “outside NHMRC grants, is there any Commonwealth support for people with this condition that you are aware?”.
“There is no specific programme in the Department of Health to support people with Myalgic Encephalomyelitis” was the Department of Health’s answer. The written answers to the questions taken on notice are published on the Australian Parliament House website.
Ludlam advised he has followed up with more questions, because ‘it felt like the response raised more questions than it answered.’ Ludlam also pointed out that advocacy groups are stretched and need resources to help patients, to provide education and support to GPs and to help them work with the NHMRC.
When asked for their response, Emerge Australia said they would be advocating for a review of the funding allocation and resourcing, and for the opportunity to discuss opportunities for targeted funding for ME research.
Hopefully, raising these questions about support for patients and the focus of research can change things for the better. As Ludlam says, ‘there is plenty we can do’.