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​Are you missing M.E.? Jo's story

May 16, 2019

The Two Faces of ME - Payback

"My name is Jo Moss, I’m 44 years old, I live in Norwich (UK) and I have been missing for 13+ years."

As I have mentioned in previous blogs, M.E. patients experience a worsening of symptoms following any activity. This is referred to as Post-exertional malaise (PEM), or ‘payback’ as many of us like to call it.

This means that if I choose to spend a few minutes talking to a friend, I'm likely to ‘pay’ for it for hours, or even days afterwards.

But people don't see us on our bad days - they don't see us when we crash. M.E. has two faces - the one people see, and the one which is hidden from the outside world because we are too ill to be seen.

These two photos were taken hours apart and they show the two faces of M.E.

My best friend came round to see me, and for the first time in years I put some makeup on. I even sat up and had my photo taken. We chatted and laughed for a couple of hours - it was lovely.

But the payback for this added activity lasted days.

This is the real M.E.:

If you would like to find out more about what it's like living with severe M.E. please read my recent blog post.

#TwoFacesOfME is a popular hashtag where people with M.E. show the two sides to their fluctuating condition. We want to bring this back, we're asking our supporters: What are your #TwoFacesOfME?