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 leave their homes or even their bed.

Between 24,000 – 60,000 Australians have severe ME.  

Speaking to patients around Australia, a major hurdle is simply finding a GP who can visit them at home for basic medical care.

“The most difficult thing for me when I was completely bedbound was having no medical professional who could come and see me as I was too ill to travel to the doctor. Advocating for myself to receive basic medical care was exhausting and stressful and very taxing on my health,” patient in Victoria.

“What frustrates me most is how many doctors just do not understand how much we deteriorate after each visit, even if they say they understand severe ME. If they did they would do home visits,” patient in South Australia.


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