@EndersWorlds

3 months ago

Good video, glad to see someone tackling exactly why this sort of TV 'endorsement' by proxy is so damaging. As someone with ME I'd just like to add that our primary symptom is not actually fatigue, it is post Exertional Malaise - which is a giant flare up of all our symptoms including feeling flu like and very unwell indeed, caused by going even slightly over our physical limitations, anything that uses energy counts - including talking, reading, and even THINKING for people at the very severe end! Thinking uses energy on a cellular level - how else would it happen after all. I would appreciate it if more people could start making sure they mention Post Exertional Malaise since it really is the symptom that rules them all, so to speak. It is what rules my entire life and it's risky - trigger it often enough or big enough, and you don't really recover back to where you were, you stay stuck at a lower level of functioning, it literally makes you sicker than you were. Over time some people end up dead, because it's so incredibly difficult to control and keep inside your limits. When 'over doing it' can simply mean you had an upset tummy and went to the loo a few times too many that day, or had to pick something up from the floor, or simply moved around in bed a bit too much that day, it is unbelievably difficult to stay inside your limits and prevent triggering PEM, many people don't manage it and therefore deteriorate over the years getting sicker and sicker. It's so poorly understood by medical staff that going to hospital becomes something to fear. Research is coming along though and I love that this video talks about how we need more people investing in genuine medical entrepreneurship, moving real, science evidence backed treatment forwards. In all areas, but hopefully soon for ME too.

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