What if I told you there was a disease that affected 1% of the population, and of that 1%, up to a quarter of them were either bedbound or housebound? That’s up to 250,000 Australians, approximately 62,000 of which are limited to home or bed.
That’s a condition on a par, in terms of prevalence, with coeliac disease and schizophrenia. Unlike coeliac disease, it doesn’t have any reliable test; and unlike schizophrenia, it doesn’t have a list of evidence-based pharmacotherapeutic options. It’s also a condition that’s entering general practice more than ever before.
It’s myalgic encephalitis/chronic fatigue syndrome (ME/CFS), and it appears to be linked to COVID-infection, among its many other postulated causes.
In the bad old days, this disease was, at best, misunderstood and, at worst, used as a euphemism for psychological distress or somatisation. Doctors used to roll their eyes – deride their patients, even.
ME/CFS isn’t a psychiatric illness, and it’s not just about ‘being tired’. It’s time to let go of old, 1997 ideas from medical school about this disease.
The fact is that people with ME/CFS don’t refresh after sleeping and have difficulty making energy at a cellular level. The cardinal symptom is post-exertional malaise and unrefreshing sleep – like being perpetually thirsty despite drinking gallons of water.
We’re all almost certainly going to be seeing this entity in the COVID era. When a patient comes to you and you suspect ME/CFS, rather than hiding behind your examination curtain or going on indefinite leave, be prepared for the conversation. Do some reading, find some guidelines.
Here's a few i've found interesting:
Like so many things, ME/CFS seems less daunting when you have a framework for dealing with it. Like so many things, this work is about being prepared and able to walk the journey with our patients.
Dr Anita Muñoz
Chair, Victoria Faculty