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 Sasha Nimmo 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. The words 'breakthrough' and 'finally' have … Continue reading Calcium channel ion defects: research from Australia’s Griffith Uni
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
Queensland scientists looked at patients with moderate and severe Myalgic Encephalomyelitis (International Consensus Criteria). In the severe ME patients, they found 37 genes were significantly upregulated and 55 genes were significantly downregulated compared with nonfatigued controls. However, there was no difference in expression of protein kinase genes between moderate ME patients and controls.
by Sasha Nimmo Up to 240,000 Australians have Myalgic Encephalomyelitis. ME may be mild, moderate or severe. More than 25% of people affected are housebound or bedbound, and research shows that people with severe ME have a quality of life similar to those with cancer and late-stage AIDS. Worsening of symptoms can be sudden and permanent. One … Continue reading Facts and figures on M.E. in Australia
by Sasha Nimmo What have big donations done for the Big Data Study on severely ill patients at the Open Medicine Foundation? Last year the Open Medicine Foundation (OMF) received more than US$1,650,000 in anonymous donations towards the End ME/CFS project-Severely Ill Chronic Fatigue Syndrome Big Data Study. Four large donations from families with loved … Continue reading Big donations speeding up US Big Data study on severe ME and CFS patients