Boost for people with ME and chronic fatigue syndrome thanks to Parliament

Senator Anne Urquhart reading a motion in the Senate chamber

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.

 

14 thoughts on “Boost for people with ME and chronic fatigue syndrome thanks to Parliament

  1. Fantastic news and awesome comments and work from those behind the scenes of this momentous achievement. Thank you Sasha and all who assisted in making this possible.

  2. Thank you so very much to ALL 3 SENATORS who have pushed this motion forward and Sasha also. I am one of the 25% they speak of with very severe M.E. I’m bedridden/housebound and can not take care of myself or my child without help. To date (May 10th 2018) I have seizured 49 times just this year, I live in constant severe pain, am faint on standing, now have a heart dysfunction from ME, severe memory and cognitive problems, problems with speech and walking, sleeping, I can no longer drive or work (I was a Registered Psychologist), I get migraines and more but the grief and loss associated with this illness is often overlooked. I was stripped bare when I fell sick overnight Ì lost my job, my health, my identity, my independence, my ability to parent like I used to, I had to move to be looked after by my aging parents and my Mum had EXTREMELY severe ME (for 17 yrs she was bedridden) and I/we watched her inhumanely because the ME wasn’t recognised deteriorate and be tortured literally by pain and infections to her immune system until she died. It broke my heart. What broke my heart more was that the Coroner wouldn’t put ME as her cause of death. No just “Natural causes” yet she’d been bedridden with a heart condition also for 17 years seriously ill, to I’ll to withstand the anesthetic for a hip replacement. She would have died on the operating table she was told. She was beyond desperately ill and she died. I nearly died in 2015 and have since put on weight and stopped committing everyday, but the nausea is still there… everyday. Life becomes surreal. Friends lose touch. You’re TOO sick to reach out and they keep moving on having NO IDEA OF THE HELL YOU’RE LIVING… the 4 walls you’re stuck in. Like a bird in a cage that just gets very badly wounded each time it attempts to go out. They call that PENE. A flare up of symptoms. It’s different for everyone but it horrific. I get no visitors anymore. None. Not even family. I don’t understand people. I guess they really have no concept of the hell your going through, that each day IS A battle to stay alive, how isolation feels and just how sick you really are. I never thought it was possible to feel this ill and still be alive. Its actually scarey sometimes. Like when the left side of my body goes and the muscles weaken. Yes. This disease has destroyed my life and my family. Killed my mother and nothing was ever the same again. EVER WILL be. She was the most beautiful and kind hearted woman. The best Mum, I still miss her everyday.

    1. Sweetheart, I see you, I hear you & I believe you! I feel your pain & isolation. You have described this living hell so well. My heart breaks as I read about the loss of your dear Mum, who was so severely ill with ME herself. This should NOT be happening in the 21st century. It is criminal!! I’ve had ME for 23 years, & suffered a heart attack which I’m sure was caused by the chronic inflammation in my body. Big hugs to you & please hang in there. I feel there may be changes on the horizon. xx 💕

  3. Thanks very much Senators Polley, Urquhart and Griff for your acknowledgement and call to do more to research this dreadful disease ME/CFS and support suffers this International ME Awareness Day. Thankyou also to the patient community, the advocates, the researchers, the friends and family, and the doctors and services who support us. ✊🏽🙏🏽👏

  4. Huge thanks to Senators Polley, Urquhart and Griff for your acknowledgement and support for more funds & more research into this dreadful & hugely debilitating disease ME/CFS. Thank you also for your support of sufferers on 12th May, International ME Awareness Day. It means so very much to all of us who have to ‘live’ with ME decade after decade with no help from the medical community, welfare agencies, social services, etc. etc. Many of us have lost friends & family because of this disease, that is SO misunderstood & too often disbelieved. Research is vital, & we have some brilliant people in the research fields here in Australia, but they desperately need more funds to continue with their groundbreaking research. NCNED at Griffith University on the Gold Coast in Queensland is just one that comes to mind. I know there are others, but my foggy brain cannot think who they are right now. Others may be able to remember, & name them? Again massive thanks from an ME sufferer of 23 years – I am one of the #millionsmissing …

  5. Thank you so much from Ireland. My heart is breaking for you all. My beautiful daughter and granddaughter are suffering from M.E. in Scotland and most of their life revolves around the home. Two beautiful grandchildren are suffering from M. E. in Ireland they are getting no help from the medical community here. Please keep up the great work, we are all depending on you. Sending love and prayers. Deirdre xxxx

  6. This insidous disease has robbed me of my income my independence, my social and family committments. My freedom.
    Instead I am in a room as my prison…many days in a week i cannot shower…housework is undertaken by a cleaner..garden by a regular gardener…if I didnt have my daughter to care for me…I wonder where I would be.
    Thank you Senators for looking into this awful insidous syndrome…..I just want my life back. I had a very successful business before this.

  7. Thank you Australia for your great efforts. We are hanging onto your every word because you seem to be ahead of the game.
    I hope you find that cure you thought you might be on the verge of finding. My daughter has M.E and it breaks my heart seeing her life slip by and the opportunity to get out & meet someone in time to have a child.

  8. I’m so glad to have read this. I have severe CFS for the last 15 years leaving me housebound and bedridden having to rely on a carer to help me with looking after my children and myself. There is no quality of life. It hasn’t helped that I also suffer severe mental health issues which leave me on a merry go round which I am so desperate to get off! People just assume your lazy when if they only knew just having a shower completely drains me to the core (I have to sit on the floor alot of the time). I just want to be normal. I’ve lost my 20s and am now 37. I’ve watched all my friends live their lives and I feel like such a loser that I know what I want to accomplish in my head but my body just won’t let me. I really hope that a cure can be found one day because to be honest… I don’t know how much longer I can live like this. Please… I beg of anyone who reads this and can spare even $1 towards research… You’d be changing the lives of people forever with this invisible illness. Thanks for reading my comment. Peace be with you. ✌️

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