August 8th, 2018: Understanding and Remembrance Day for Severe ME, by Jody Smith in Phoenix Rising blog, 4 Aug 2018

Can you read these words I’ve written on this page? Good. Then you know that I am NOT an example of the extremely ill with ME/CFS. Because if I were, you wouldn’t see or hear me. I’d be behind a closed door in my bed, trying to block out any sound or light.

Even if you were in the same house with such a person you might not see or hear them. They are likely busy focusing on breathing in and out. You’d be surprised how much work that can be when you’re this ill. They are trying to live through the next second, minute, hour … day … year … It takes everything they’ve got.

I have never been this sick, more fortunate for me. But don’t kid yourself. There are so many of these invalids holding on to the shreds and threads of survival. In fact, 25% of those with ME/CFS suffer from its most severe forms. Some are able to depend on a caregiver. Many more are on their own, toughing it out.

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More information and resources for severe ME:


25% ME group

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