Senator Ludlam on ME: “I am struggling to think of a cohort of people in our community that large for whom there is so little”. This is the first story in the series, more news was published in February 2016.

West Australian Senator and deputy leader of the Greens party, Scott Ludlam, asked the Australian Government what they are doing for people with myalgic encephalomyelitis. The answer is ‘not much’.

When asked about funding for ME, the government admitted it was small. “The NHMRC (National Health and Medical Research Council) has provided a little over $2 million in funding between 2000 and 2013. So you are correct of course that the amount of money over all that has come from NHMRC is quite small into this area”, said Prof Anne Kelso, CEO of the NHMRC. Australian $2 million dollars is equivalent to around US$1.43m or UK 935,800 pounds.

Senator Ludlam raised questions relating to diagnosis, cure, management plans and treatment of myalgic encephalomyelitis, which is he said may be more commonly known as ME or chronic fatigue syndrome.

“They put modern estimates at 0.4 to 2.6 per cent of the population. In an Australian context that would be between 92,000 and 598,000 people. They [Emerge Australia] also say on their website that there is no collective diagnosis, there is no cure and there is no management plan. I am struggling to think of a cohort of people in our community that large for whom there is so little. That is why I fronted up tonight, to see if you can help out.”

Senator Ludlam’s figures on the number of people affected came from Emerge Australia*.

Is ME of national significance to Australia and who decides? Prof Kelso said “areas of substantial and national significance will get special funding from time to time. Up to this point ME has not been one of those. It [national significance status] is a discussion; it can be suggestions that come from outside, maybe from the public,” Prof Kelso replied.

If you’d like to let the NHMRC know that ME is an issue of national significance, you can write to them or write to your federal representative and ask them to tell the Health Minister and the NHMRC.

The questions were asked at the triannual Budget Estimates hearings at Parliament House, Canberra. The hearings provide an opportunity for non-government senators to ask questions of public servants about the running of government and government spending. The Senate is the upper house of Australia’s Parliament. Here is the transcript.

The Department of Health took two ‘questions on notice’: what is the type of research the NHMRC is funding and what funding is available to ME advocacy groups. Questions on notice are questions which couldn’t be immediately answered by the department, so the department has to provide the answers in writing to the Senator by mid-December.

According the NHMRC website, funding in 2000 to 2014 was given to the University of NSW for ‘Depression, anxiety and somatic distress: syndromal structure and relationship to onset of clinical disorder’ ($224,000); ‘A prospective study of the psychiatric & medical characteristics of post-infective fatigue & chronic fatigue syndrome’ ($500,000); ‘Determinants of the outcomes from infectious diseases’ ($550,000, funding allocated from 2013 through to 2017); and just over $1m for two five-year fellowships. Monash University received $58,000 for the study ‘Respiratory and neurological health, symptoms and chronic fatigue syndrome in Australian Gulf War veterans’.

Senator Ludlam posted “14 things we learned at Senate Estimates” and at number five:

Between 0.4 and 2.6 per cent of the population suffer Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) but so little is known. Anywhere from 92,000 to 598,000 Australians suffer from this extraordinarily complex and debilitating condition. There is no collective diagnosis, there is no known cure and there is no consistent management plan. The NHMRC has provided a little over $2 million in funding between 2000 and 2013, which matches the slow pace of research worldwide. It is time to step up our efforts to fund basic research and advocacy and provide real hope for people with this ‘invisible disease’.

*Australia has no national advocacy group, however Emerge Australia represents Victoria, the Northern Territory, Tasmania & other people in Australia can join. There is also the ME/CFS Society of Western Australia, in South Australia the ME/CFS Australia (SA) Inc, the ME/CFS Society of NSW, the ME/CFS/FM Support Association Queensland and the ACT ME/CFS Society (who provide support but not advocacy and may close in 2016).

Read more in the second story and third story in this series and follow @sashanimmo and @MEActNet on Twitter for updates.