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https://www.abc.net.au/news/2022-05-14/australians-with-me-chronic-fatigue-syndrome-human-experiment/101059572>
"What risks would you take if you were only able to function for one, maybe two
hours a day? The rest of the day, you must lie down with an eye mask on while
listening to something quiet. You can't work, exercise or drive. You can't
leave the house for more than an hour or two once a week.
Would you risk an increased chance of skin cancer? Or possible vision damage
and blindness?
I would. I am.
Many years ago, I woke up one morning unable to move my body from my bed. It
felt like a tonne of wet cement had been poured on top of me and I couldn't
shift it. I struggled to answer questions, read, remember things and connect
ideas. Getting myself up or out of the house to work became an extreme sport.
After eight years visiting doctor after doctor, I was diagnosed with a disease
known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME).
ME has no treatment or cure. Millions of people are joining this cohort via
long COVID, which shares striking similarities with ME. Both patients and
doctors are in a murky world of unknowns.
But I am one of the lucky ones: I've become a human experiment.
If there's a chance a treatment could increase my capacity so I can work, or
drive, or socialise independently again, I will try it. When you're trapped
with a debilitating illness, any different feeling can be a welcome relief."
Cheers,
*** Xanni ***
--
mailto:xanni@xanadu.net Andrew Pam
http://xanadu.com.au/ Chief Scientist, Xanadu
https://glasswings.com.au/ Partner, Glass Wings
https://sericyb.com.au/ Manager, Serious Cybernetics
