Thank you to Lennox Head GP Dr Dan Ewald for contributing the article below and highlighting the need to raise awareness of myalgic encephalomyelitis (ME), often referred to as chronic fatigue syndrome (CFS).
If you have an article or local update you would like to share on our website and newsletter, please submit it here for review.
May 12 was International ME/CFS Day. ME/CFS is a debilitating condition that affects 17-30 million people worldwide, including an estimated 250,000 Australians. Of those affected, 75% are unable to work and 25% are homebound or bedridden.
It’s an underfunded and often misunderstood condition. With the recent large group of people with long COVID showing similar symptoms, raising awareness for this condition is even more important than ever.
ME/CFS is an invisible condition, meaning you cannot physically see the disability and there is no diagnostic biomarker. People with ME/CFS can look perfectly well even if they are quite disabled. They are also invisible in the community as many of the sufferers are housebound and out-of-mind of health services.
There are several incomplete theories as to the pathophysiology, and although researchers continue to try to study what’s going on, they are extremely underfunded. The lack of knowledge means there is no treatment, no cure and often intense stigma and misunderstanding and therapeutic nihilism.
ME/CFS is not a mental health condition. It’s estimated by the ME action group that up to 90% of people with ME/CFS are undiagnosed or misdiagnosed. That means there are a lot of people in Australia and therefore in this community, who are living with little support, unable to participate in their former life and often unable to find useful health care.
People with ME/CFS are often too unwell to speak up and end up suffering at home in silence. Many waste a lot of money on ineffective treatments.
My daughter was diagnosed with ME when she was about 14 years old and went from a sporty, academic teen with a bright future, to being bed-bound and severely debilitated. This is how she describes it:
Fatigue so intense it became pain all through my body. I simply vanished from school, friendships, my life, as a mysterious illness sapped away all my strength. No matter how hard I tried, my world became smaller and smaller ’til it was the view out the window and all I could do was watch time pass by. I’m 20 now and have moved from my bed to the armchair but am still majorly disabled by this condition. I’m one of the lucky ones, some people are so debilitated they live in a darkened room, sometimes in a nursing home despite their young age, unable to tolerate sound, touch and light.
Raising awareness is a starting point. Understanding what it’s like from the patient perspective can help shift us from unwanted pity to possibly useful action and support.
This award-winning short video describes a patient’s experience. More clinical education can be found here.
Mid and North Coast Localised Pathways
manc.communityhealthpathways.org
Username: manchealth
Password: conn3ct3d