by Sam* 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 even having a person enter the … Continue reading Severe ME: I had to fight the people supposed to help me
by Helen Donovan May 12 is Alem Matthee's birthday. Around the world, people with ME, their friends, families and scientists are grateful for Alem's work in getting trial data released, showing that graded exercise therapy and cognitive behavioural therapy did not improve health the way the study's authors claimed. In 2014 Alem filed a Freedom … Continue reading A Mother’s Story: Alem Matthees
by Kathy Collett 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 for treatment which helped … Continue reading The Lost Years: a personal journey
Andrew talks about his experience on SBS Insight: how the show focussed on recovered sports stars and exercise clinics while he was told to 'let others speak' when he tried to talk.
By Kathy Collett The #MillionsMissing event for Western Australia was held for the first time this year. The location was in the port city of Fremantle, approximately 20 kms from Perth in Pioneer Park conveniently located opposite the Fremantle Railway Station. Prior to the event, Rachel Pemberton from the Fremantle Council had spoken at one … Continue reading Millions Missing Fremantle
written by Julia's friend It is with heavy hearts that we post this sad news. Our ME community has lost an advocate and precious soul. Julia Browell passed away on Monday evening, aged 61. She died of multiple organ failure in hospital, her daughter and grandchildren by her side. Julia lived with severe Myalgic Encephalomyelitis … Continue reading Julia Browell
By Christine Hunter For the past decade patients diagnosed with chronic fatigue syndrome have been shamefully mistreated due to government policy failure and lack of medical education. Case Report by Sukocheva et al.BMC Infectious Diseases (2016) 16:165, Coxiella burnetii dormancy in a fatal ten year multisystem dysfunctional illness: case report. Routine autopsy findings in 1996 were limited. … Continue reading Case report: Alison Hunter
by Christine Hunter Alison became suddenly ill in 1986 with a high fever, brutal headache and a disturbing myriad of other symptoms. We had no conception of what lay ahead. As the weeks and months passed under "house arrest", the diagnosis of post viral syndrome offered little comfort - no treatment, no release date. Alison … Continue reading Remembering Alison Hunter 1976 – 1996
by Sasha Nimmo In September 2016, Queen Mary University of London (QMUL) was compelled to release the data from the 2011 PACE trial, a trial which examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care. West Australian Alem Matthees was one of many people who wanted a closer look … Continue reading Alem Matthees: how an Australian’s FOI request busted open a UK science scandal
by Sasha Nimmo 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 by medical professionals and community care workers made life even more difficult. … Continue reading Severe ME: ‘Took nearly 40 years to be diagnosed’
