ME in Australia

One Day He Was ‘Gifted’, The Next He Couldn’t String Together A Sentence

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    By Carrol Baker in kidspot.   Once bright and energetic 12-year-old Ethan struggled to get out of bed in the morning. But, as his mum Shelley says, that was just the beginning. At first, doctors prescribed bed rest. They thought it was a virus and they said you can’t really do anything for a virus, he’ll just […]

‘But You Don’t Look Sick’: Living With An Invisible Disability

Invisible Illness

    By Nicole Precel in The Sydney Morning Herald.   When Rebecca Young parks her car in a disabled parking spot she often feels the searing stares. Is she driving her grandparents’ car? Why does she have a disability sticker when she is aged in her 30s and appears to walk perfectly well? Ms […]

Living With Chronic Fatigue Syndrome

Australia

    On Nightlife with Philip Clark.   CFS is considered to be a complicated disorder which is not only difficult to diagnose but also has no effective treatment. Estimates show that about 1% of the Australian population which is about 250,000 people suffer from it and many of those suffering from it are unable […]

Louisa’s Fight For NDIS Chronic Fatigue Syndrome Support

Australia

    By Dixie Sulda in The Advertiser.   Louisa Stocco is almost too exhausted to fight her own battle. The 21 year old was diagnosed with Chronic Fatigue Syndrome (CFS) three years ago, after she collapsed from exhaustion while touring with a performing arts company. Since then, her physical and mental fatigue has stopped […]

Severe ME: I Had To Fight The People Supposed To Help Me

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    by Sam* In ME Australia.    Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]

Boost For People With ME And Chronic Fatigue Syndrome Thanks To Australian Parliament

Australia

    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 […]

Children With Chronic Fatigue Syndrome Often Wait More Than A Year For Diagnosis

Australia

  by Sasha Nimmo Researchers at the Murdoch Children’s Research Institute in Melbourne confirmed that paediatric chronic fatigue syndrome (Fukuda criteria) causes significant disability and little is known about how common the condition is or how it is currently managed in Australia. More than half of children have to wait a year or longer before […]

The Lost Years: A Personal Journey

Australia

  by Kathy Collett in ME Australia.  Kathy Collett has lived with Myalgic Encephalomyelitis for more than 30 years.  Frustrated by the lack of knowledge and dismissive attitude of doctors, Kathy conducted her own research to see what she could do to improve her health. Pre-internet, this was difficult but Kathy persisted and travelled overseas […]

‘I Was In Denial And Ashamed By My CFS’

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  By Simon Del Favero in SBS Insight.   When Simon realised that treatment options in Australia for his chronic fatigue syndrome were limited he looked overseas for answers. I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  (ME/CFS) in early 2011 after a severe bout of glandular fever. In the years prior to my diagnosis I was studying […]

Young People With Chronic Fatigue Syndrome Call For Diagnostic Test

Australia

    By Janelle Miles, The Sunday Mail (Qld).   Ketra Wooding lives in aged care on the Gold Coast. She’s an articulate, intelligent young woman who once enjoyed the carefree life of a sailor, working on luxury yachts and travelling to exotic places, such as the Galapagos Islands and the Caribbean. She spent the first […]

You and ME: An Update On Myalgic Encephalomyelitis For Psychologists

ME

  By Rose Silvester in the On Eagles Wings Blog.   Rose Silvester is a consultant clinical psychologist based in Wellington, New Zealand, currently working at the Regional Personality Disorder Service at Capital & Coast District Health Board (CCDHB). In the context of her son’s illness she has immersed herself in the literature available on ME/CFS and […]

Friends In Australia’s Parliament For People With ME And Chronic Fatigue Syndrome

Australia

  By Sasha Nimmo in ME Australia.   Three senators have formed 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 […]

Emerge Australia Welcomes $370,000 In Federal Funding

Australia

  From Mirage News.   Emerge Australia, the national organisation providing support, information and advocacy for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS), has received $370,000 in Federal funding to support its work. It is the largest Federal funding that has been committed to a support organisation working in the ME/CFS space. CEO […]

‘Potentially Harmful And Old-Fashioned’ Chronic Fatigue Treatments Under Review

Australia

  By Andy Park in ABC News Australia.   Treatment recommended to Chronic Fatigue Syndrome (CFS) patients can be potentially harmful and is old-fashioned, according to a patient group who are asking a new government advisory committee to research potential cures, not counselling or exercise relief. The predominant treatment for many of Australia’s 200,000 sufferers […]

Boost For People With ME And Chronic Fatigue Syndrome Thanks To Parliament (Australia)

Australia

    By Sasha Nimmo in ME Australia. (Written prior to May 12th, but of interest nonetheless) 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 […]

What Causes Chronic Fatigue ? What We Know, Don’t Know And Suspect

ME

  By Mark Guthridge in The Conversation.   Around 200,000 people in Australia suffer from a debilitating illness often branded with the unfortunate name of chronic fatigue syndrome (CFS). I say “unfortunate” because this implies patients are simply tired, run-down, burnt-out or overly stressed. But myalgic encephalomyelitis, or ME/CFS as it is now more commonly called, is a serious […]

Chronic Fatigue Syndrome / Myalgic Encephalitis

Australia

  From The Parliament of New South Wales.   Mr GREG APLIN ( Albury ) ( 20:15 ): I have witnessed the damage wrought on healthy, happy individuals by chronic fatigue syndrome. I have also witnessed the additional harm caused by health professionals and ordinary people who regard it as “all in the mind”. This is a one-two hit that delivers […]

Calcium Channel ion Defects: Research From Australia’s Griffith Uni

Australia

    by Sasha Nimmo in ME Australia.   Queensland’s Griffith University is home to the National Centre for Neuroimmunology and Emerging Diseases (NCNED), one of the leading centres for research in ME and chronic fatigue syndrome.  They’ve been in the news lately for their patented biomarker discovery on calcium channel ion defects in patients. […]

Response From The Mason Foundation: Petition To Stop Graded Exercise Therapy Trial

Sydney

  From ME News Australia.   More than 700 people signed the petition to ask the Mason Foundation and the University of New South Wales (UNSW) to cease the trial of graded exercise therapy for chronic fatigue syndrome, in the face of newly-released evidence from the PACE trial (which UNSW relied upon in this trial). “We are […]

National Centre For Neuroimmunology And Emerging Diseases – Australia

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    From Griffith University.   Major improvement in the diagnosis of Chronic Fatigue Syndrome is expected following the award of $4 m in funding to one of Australia’s foremost authorities on the condition. Professors Sonya Marshall-Gradisnik and Don Staines and Dr Samantha Johnston from the National Centre For Neuroimmunology and Emerging Diseases (NCNED) at […]

Severe ME: Suffering Ignored And Denied Help

Severe ME

By Sasha Nimmo in ME Australia.   Myalgic Encephalomyelitis is estimated to affect between 0.4% and 1% of the population, according to the International Consensus Criteria primer for medical practitioners, endorsed by Australian patient organisations. In Australia, that is between 96,700 and 241,800 people (ABS population figures). Of those, 25% are so severely affected that they cannot […]

Rethinking Chronic Fatigue Syndrome

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      By Sylvia Rowley in The Saturday Paper (Australia).   I’m typing this lying in my dark bedroom with my eyes closed, on a dark screen with earplugs in,” writes 45-year-old Anna Kennedy, a Melbourne-based clinical psychologist, in one of our first email exchanges. “It’s a rotten place for me to be as […]

Severe ME: ‘Took Nearly 40 Years To Be Diagnosed’

Severe ME

    by Sasha Nimmo in The Blue Coffee Mug Blog in ME Australia.   Between 24,000 – 60,000 Australians have severe ME.  This is the first in a series telling the stories of Australians with severe ME. Given the wrong medical treatment and intervention harmed this patient’s health to the point of no return. Disbelief […]

More Than A Million Americans Are Suffering From A Mysterious, Debilitating Disease — And They’re Sick And Tired Of Being Ignored

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    By Rafi Letzter in Business Insider Australia.   Imagine living with a disease that renders you disabled and exhausted, unable to meet the physical demands of daily living. Now imagine that much of the medical establishment refused to believe your disease was “real” in the sense of a physical illness, and failed to fund […]

Rethinking Chronic Fatigue Syndrome

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  By Sylvia Rowley in The Saturday Paper. (From an Australian Viewpoint). I’m typing this lying in my dark bedroom with my eyes closed, on a dark screen with earplugs in,” writes 45-year-old Anna Kennedy, a Melbourne-based clinical psychologist, in one of our first email exchanges. “It’s a rotten place for me to be as […]

New CBT And GET Threat For Australian CFS Patients

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  By Sasha Nimmo in Shout Out About ME.   Australian CFS researcher, Prof Andrew Lloyd last year explained he was working on an online program of graded exercise therapy (GET) and cognitive behavior therapy (CBT) at the University of NSW’s Fatigue Clinic. Prof Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably […]

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