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 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 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’
by Sasha Nimmo 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 leave their homes or … Continue reading Severe ME: Suffering ignored and denied help
by Sasha Nimmo An Australian university’s longitudinal study into immune changes in people with chronic fatigue syndrome (CFS) may lead to diagnostic test. Griffith University researchers have looked at the immune systems of patients with moderate and severe CFS (1994 Fukuda criteria) once, then again six months later. The study has just been published in the Journal of … Continue reading Study shows immune differences in moderate and severe chronic fatigue syndrome (Fukuda criteria)
