by Sasha Nimmo

The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field.

Senator Anne Urquhart, a Tasmanian Labor senator, (on behalf of her colleague Senator Helen Polley) and Senator Stirling Griff, a Centre Alliance senator from South Australia, moved the motion in the Senate today, in time for International ME and CFS Awareness Day on May 12.  Across Australia and the rest of the world, events will be held to mark the day, including in Melbourne’s Federation Square.

The Senate motion recognises that the lack of a current diagnostic test for ME and CFS is a barrier to people receiving timely and accurate diagnosis, and that there is no current cure or effective treatment.

Between 94,000 and 242,000 Australians have ME or CFS, 25 per cent are so severely affected they cannot leave home or bed.  There is a five per cent remission rate. Australian GPs struggle to recognise the illness without useful clinical guidelines and in Australia it is misdiagnosed in nearly 40 per cent of cases.

“Australian researchers are amongst the best in the world and their vitally important work needs to be funded so we don’t lose them to other fields,” said Sasha Nimmo, who has severe ME.  “It is their work that gives us hope.”

“To diagnose and treat this complex and debilitating illness, we need to understand it. With small amounts of funding from private donors and a charitable foundation in the past two years, we have discovered clear, specific deficits in energy producing processes in cells cultured from patient blood. F​unding​ for further research​ could bring us much closer to helping millions of patients worldwide. ​We are pleased that Parliament recognises how important it is to ​su​pport ​biomedical research into this ​neglected, but surprisingly common disease,​” said Professor Paul Fisher, La Trobe University.

“We are pleased that the Senate recognises the importance of biomedical research for ME and chronic fatigue syndrome because it has been overlooked for too long. Our scientists are making significant scientific discoveries to understand the pathology and dysfunction in the immune system. This research could lead to changing hundreds of thousands of Australians’ lives for the better,” said Professor Sonya Marshall-Gradisnik, National Centre for Neuroimmunology and Emerging Diseases, Griffith University.

“Australian research in ME/CFS has great potential, which is recognised by colleagues in Europe and the US. The government need to recognise and support the right scientists to maintain and grow biomedical research within Australia. This will eventually strengthen the connections already built with the rest of the world,” said immunologist Fane Mensah, University College London.

“Our work in Australia has identified a potential serum biomarker, however, ongoing funding is required to validate our findings, as well as optimise its diagnostic promise. Having a biomarker will transform the field, saving time via earlier diagnosis and assisting appropriate treatment.  In the future, it could also contribute to the development of targeted ME/CFS therapies,” said Dr Brett Lidbury, Associate Professor, The Australian National University.

Importantly, the Senate motion asked Australia’s National Health and Medical Research Council (NHMRC) to ensure their ME and CFS advisory committee has an open and transparent process, taking advice from leading scientists and clinicians.

The National Health and Medical Research Council’s appointment of an advisory committee is a welcome step.  To take us where we need to go and avoid the mistakes of the past, the ME and CFS advisory committee needs to operate transparently and consult with other governments who are updating or have already updated their advice and research approach.

“We hear from desperate people every day, seeking help to manage their illness. We are grateful that Parliament is paying attention and hope to see an increase in investment in biomedical research.  This would very directly help patients, many of whom are extremely sick and rely on families and friends to care for them,” said Dr Heidi Nicholl, Chief Executive Officer of Emerge Australia.

The Senate motion also urged federal, state, territory and local governments to take leadership to help people with ME and CFS access the support they need.

Please write in the online cards and add your thanks to Senator Polley and Senator Urquhart as well as to Senator Griff’s card.

The Senate motion:

That the Senate

Notes that:

  1. May 12 is International Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Awareness Day.
  2. ME and CFS is a debilitating neurological illness that affects the brain, endocrine system and muscles in adults and children.
  3. ME and CFS affects between 94,000 and 242,000 Australians, with around 25 per cent of people with ME and CFS unable to leave their house or bed.
  4. The lack of a current diagnostic test for ME and CFS is a barrier to people receiving timely and accurate diagnosis.
  5. There is no current cure or effective treatment for ME and CFS and more biomedical research needs to be done to better understand this medical conditionThe actions and activities across Australia this week to mark the 12th of May, including Millions Missing events.

Acknowledges:

  1.      The positive development of the NHMRC establishing a ME/CFS advisory committee to advise if new guidelines are needed in Australia.
  2.      The important role of families and carers of people living with ME/CFS.

Urges:

  1. The NHMRC to ensure the ME/CFS advisory committee runs an open and transparent process that includes advice from leading scientists and clinicians.
  2. Federal, State, Territory and local Governments to take leadership and work with people who have ME/CFS to help them get the support they need.