Friends in Australia’s parliament for people with ME and chronic fatigue syndrome

Parliament House Canberra at dusk

by Sasha Nimmo

Three senators have formed a Parliamentary Friends of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) group in Australia’s federal parliament.

The Parliamentary Friendship group is co-chaired by Western Australian Greens Senator Jordon Steele-John,  Tasmanian Liberal Senator Jonathan Duniam and Queensland Labor Senator Claire Moore.

This group will provide a forum for members of the House of Representatives and senators to meet and interact with representative groups and scientists studying ME and CFS.

“For too long people who journey with ME or CFS have been ignored, belittled and written-off by society and their government. I am thrilled to have established this Parliamentary Friendship Group because in it there now exists a forum in which the voice of the community can be heard and can provide parliament with guidance as to how it might, as an assembly of your representatives, best fulfil those responsibilities to you that it has thus far so shamefully neglected,” said Senator Jordon Steele-John.

Senator Steele-John continued former senator Scott Ludlam’s work in asking questions in Senate Budget Estimates’ hearings about the progress of research for people with ME and CFS, asking the National Health and Medical Research Council if it would be concerning if a member of the panel thought that ME or CFS patients could be cured by aqua aerobics.

Senator Duniam was elected in 2016, previously working for Tasmania’s Premier.

“I am pleased to be a co-chair of the Parliamentary Friends of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) group. Conservatively it is estimated that CFS affects between 0.4 and one percent of the world’s population, which means up to 240,000 Australians may be affected,” said Senator Duniam.

“By forming this group, it is hoped that we as elected representatives can promote and raise awareness to fellow Parliamentarians, policy makers, and to the wider community of the impact of this misunderstood disease.”

Senator Moore said this was important and she is a long time supporter of people with ME and CFS. In 2017 Senator Moore put forward a motion recognising ME Awareness Day.  Senator Moore is retiring from parliament at the next election, after serving Queensland for 17 years.

10 thoughts on “Friends in Australia’s parliament for people with ME and chronic fatigue syndrome

  1. The UK have just announced it is to be recognised as a neurological disease like M.S.

    We need so much more help and recognition in this country and not to be stopped from gaining welfare dsp or NDIS which is nearly impossible. Sufferers spend most of their life behind closed doors, darkened rooms and are forgotton.

  2. This is such great news!!!
    I have a son who has severe ME. I am nursing him full time and can’t even begin to tell anyone how distressing the disease is. The fact that there is very little recognition of ME and so few doctors who will even treat patients is disturbing to say the least.

    We need the backing by Government Senators , doctors and researchers
    Funding is also a huge issue and that is something that needs to be looked at.

  3. The illness isn’t taught at most medical schools and hence doctors are introduced to it through their patients. In my case, it has been necessary to research it for thirty years. I think that it is time the skepticism and ignorance is replaced with acceptance and acknowledgement. Instead of it being treated as an obscure or mental illness, all patients deserve respect and help. There are proven physical abnormalities. Thanks to these politicians, l hope this will change a diabolical situation.

  4. Reblogged this on The Zebra Pit and commented:
    It’s heartwarming to see lawmakers in Australia giving ME/CFS patients serious consideration and support by forming a parliamentary friendship. This group will provide a forum for members of the House of Representatives and senators to meet and interact with representative groups and scientists studying ME and CFS. Congrats Australia!

  5. This is fantastic. I was diagnosed with M.E. in 1993. Found a Doctor in 1994 – Dr A Martinovic in Brisbane who was helping me and 90% of his patients. Not only did he understand the whole spectrum – after experiencing M.E. himself – this man was a genius – his whole lifestyle plan incorporated most of the PACING strategies that I learnt – and he was years ahead of his time. He also wrote a scientific paper on M.E. patients who had problems with intake of E.F.A.’s – Essential Fatty Acids. He developed a nutritional plan and tweaked it weekly. We went in for our appointments 30 minutes early and entered a detailed “food intake” record for the week onto one of his computers. There was no fee for this service. He believed in educating people and he had a series of tapes to educate people how to PACE and monitor themselves accurately. Then sadly – we could go and see him – but his medicare rebates were taken away – so those of us on low incomes could not afford to go any more. He fought the government all the way – because they had taken away his patients “freedom of choice” to have a particular Doctors treatment. He helped every patient write a letter to the Equal Opportunities Board saying we wanted “freedom of choice” for our treatment. These letters were ignored. The Government then took him to court and ordered him to personally pay for all the blood tests, he’d subscribed for his patients. He was fined $100,000 dollars – costs of these tests. He did not have the money to pay this ridiculous court order. So he could not pay. Eventually and went back into practice as an ordinary G.P. which the Govt allowed – and they restored his Medicare Rebates. When I tracked him down years later, he could not treat me with his Lifestyle Program any more. He was very integral and obeyed this ruling the Govt. had put upon him. But he fought all the way and had become exhausted and his body was massively stressed – physcially and emotionally. Remember – he was managing his onw health issue of M.E. and his wife had Parkinsons disease. And so his life continued this way. Then one day years later he went on holiday with his wife for a break from the stress. But alas – it was too late for him. He had a massage heart attack at only 47 years of age. He passed on. When we found out – we were all devastated. It took me years to find another Dr to help me at Stafford – a 45 minute drive from home. He was also bullied for treating people with M.E. and shifted his practice away from his patients – and took on new patients without M.E. And so my health deteriorated and I eventually became bedridden. It was not until 15 years later that I found a Naturopath who practiced Chinese medicine that started once again to help me. A long journey – many years – I have finally climbed one rung up the ladder with about 10 more to go, according to the Bell Scale. I think Dr A Martinovic should have been given a medal. Instead he dedicated his life to others and ended up dying of a heart attack at the age of 47 years old – mostly bought on by the stress caused by the medical establishment. So that is a little about my story and of the Doctor that should have been “honoured” instead of prosecuted. (Please excuse any typos – it has taken me hours to write this – and I’ve tried to check it many times. Thank you for reading this article.

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