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2023 Aug 28

‘me/cfs’ is a globbing together of ‘ME’ Myalgic Encephalopathy aka ‘CFS’ Chronic Fatigue Syndrome. All terms contested as is everything to do with the condition.

I was diagnosed with it in 2000 but had been ill since an accident in 1991. My situation is currently classified as ‘Moderate’.

As it says in the NICE document below “Recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.” It’s my experience after losing jobs, housing and relationships that people’s negative attitudes to this condition really add to its burden. I’m hoping that the info below might do something to ease that unnecessary situation and lead to a bit more support.

This here is a listing of relevant info.

Danish research graphic (Health related quality of life index)

Many times I’ve heard people with chronic, invisible illnesses say that they feel unseen. Social life gets harder and harder to maintain. Old friends will say things like “I don’t know what to say” and so stop talking. One of the cool things that people could do, if they wanted to be supportive, is just continue to show up. Take an interest, let a sick person know that they are still important to you, that you care about them.

A healthy person might say to a sick person:

  1. “Can I come for a visit?”
  2. “You can visit me if you want.”

Is it hard to see the difference?