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Aust govt pins its hopes on NIH ME/CFS research

Senator queries ‘remarkably small amount of funding since 2000’ and the funding of GET or CBT for ME/CFS.

This article is part of an ongoing series on Senator Scott Ludlam’s questions to the Australian Senate budget estimates hearing regarding ME/CFS funding. You can read more about this developing story at Aust Senator questions govt inaction on ME.

Australia spent just $AU1.6m since 2000 on research into ME and CFS, the Australian Department of Health told a Senate budget estimates hearing this week. This figure was revised downward from $2.4m after Senator Scott Ludlam asked the Department to look into it.

Ludlam said ‘about two-thirds of the funding appears to be going into research that, however worthy, actually has nothing at all to do with ME/CFS.’


“Can you correct either the record or point out how this research is directly relevant to the questions that I asked?” the Senator then requested.

Professor Anne Kelso, CEO of the National Health and Medical Research Council (NHMRC, part of the Department of Health) identified four grants — two studies and two fellowships:

  • ‘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) in 2001-2005. Presumably this was for the ‘Dubbo’ study, published in 2006, which followed a group of people diagnosed Epstein-Barr Virus, Ross-River virus or Coxiella burneti/Q Fever to see who developed a prolonged illness (chronic fatigue syndrome).
  • ‘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] in 2003-2004
  • Two five-year fellowships at the University of NSW for Prof Andrew Lloyd ($1,065,000) from 2008-2017

Here is a video segment of the late night hearing (8:35 minutes long, no closed captions) and a transcript will be posted here when it is available.

Health bureaucrats just sharply revised down estimates of how much research funding goes into trying to understand Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). They then clarified that there is no other Commonwealth support out there, either for people dealing with this condition, or for GPs. It is time this changed.

Posted by Senator Scott Ludlam on Wednesday, February 10, 2016


Funding wasted on GET/CBT studies

Kelso added that Lloyd has ‘had a long standing interest in ME/CFS’. Lloyd was also one of the authors of the Dubbo study. Lloyd’s presentation and his involvement in the University of NSW’s Fatigue Clinic both show his support for in cognitive behavioural therapy and graded exercise therapy as a treatment for chronic fatigue syndrome.

Also, Lloyd’s attention has turned to hepatitis C (“90 percent of my work has nothing to do with CFS”) and hepatitis C was in the NHMRC fellowship information on their website, the same fellowship the NHMRC is claiming is entirely for ME/CFS research.

Ludlam asked if any of those four research papers were recommending or investigating cognitive behavioural therapy or graded exercise therapy.  Kelso said she could provide that information and took the question on notice.

Emerge Australia, the peak advocacy and support group for Australian patients, said people with ME/CFS are entitled to better support, care and respect and that the lack of good quality research needs to be challenged.

“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 behavior 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,” said Sally Missing, Emerge’s President.

Emerge is doing remarkable work

Ludlam credited Emerge, ‘they do remarkable work’, and asked about federal funding to help them advocate for Australians.

“[Emerge] are getting by on basically bugger-all.  A little bit of funding from the Victorian government, which I would acknowledge.  Nothing at a Commonwealth level.”

Up to 242,000 Australians have chronic fatigue syndrome (including 94,000 with Myalgic Encephalomyelitis which is a narrower definition) and some are severely ill, unable to leave their bedroom or home and requiring help with daily activities of life. In the hearing, Ludlam said around 46 per cent are housebound and 6 percent bedbound.

“A huge cohort of people and there’s not even an accurate diagnosis…when are we going to start seeing some action?”

Ludlam pushes for Clinical Advisory Group for ME/CFS

Ludlam raised the question of a Clinical Advisory Group for the illness and asked the Department for suggestions.

“I’m looking for anything, any suggestions or bright ideas from anyone at the table or in the room…because there is nothing going on,” Ludlam said. “What do we need to do to jump start support for these people?”

Senator Fiona Nash was quiet for a moment before saying the Department would take the question on notice.

The Health Department was asked about why there is no federal funding for support of people with the condition, advice about medical treatments, training of medical and allied health staff and dissemination of information. The Department took this question on notice as well.

In encouraging news, Kelso 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. Kelso repeated Collins’ words to her, “it is time for a significant effort to understand it”.

“It is a very important syndrome, poorly recognised and it is clearly not understood.”

Kelso said the NIH’s recent announcements about research was excellent news because of the NIH’s budget and capability and would be an important stimulus for the field, potentially also for Australia, and ‘we hope for great things to come from that research’.

Kelso said there would be a new process for funding research which may help fields that are not getting many investigator-initiated applications. She also said letters from the public fed into consideration of priorities in the decision-making process.

The hearings were then rushed to a close by the chair, Senator Zed Seselja.

A follow-up to this story will be written when the Health Department provides answers to the ‘questions on notice’.


FEATURE PHOTO: Charity by Patrik Theander


Written by Sasha Nimmo

Sasha Nimmo

Sasha Nimmo suffers from ME. She lives in Australia. In a previous life she was a journalist and media adviser. Her expressive Twitter bio states: 'Thwart institutional cowardice. Carry bolt cutters everywhere - Werner Hertzog. Also, medical research for Myalgic Encephalomyelitis.'


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  1. Lloyd’s presentation is titled ‘CFS – State of the Art’

    My response to this is “far from it”

    Emerge Australia offers more to patients than any other sources including Professor Lloyd.

    • I agree John, since Lloyd appears to be the DOH’s golden boy, it may difficult to pry any future funding away from CBT/GET. Hopefully they will throw Emerge a few bones.

    • Emerge is not the only advocacy and support organisation in Australia – other state-based organisations have been doing sterling work for decades, funded only by members and run by volunteers.

  2. The new way to jump start finding is interesting. Kelso asks for letters so we need to send her letters. NCNED’s screening test needs validating, testing….Expert physiologists Stevens/VanNess…have helped improve some people’s lives with heart rate based extremely low and slow exercise/activity programs, this is management NOT cure but research into how to put these ideas that are being endorsed by the patients using them into practice. Objective measures and safe levels of activity.

    • Glad you mentioned NCNED’s recent announcement, Freda. I will try to do a story on that. Stevens/VanNess work and tests have some diagnostic merit as well as management, I would like to add.

  3. Most stunning comment from the linked video:

    “So that’s 4 grants in 16 years related directly to ME/CFS”

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