Posted by: eramys | December 16, 2011

M.E. versus CFS

  There are regular debates, often descending into slanging matches, amongst M.E. sufferers about whether their illness should be called M.E. or CFS (Chronic Fatigue Syndrome). CFS is the term used by medical professionals and I believe generally accepted in the US amongst sufferers as the correct term.

  In my opinion, the term CFS doesn’t do justice to the many symptoms I suffer from. I think, though I could be wrong, that if I tell someone I have chronic fatigue syndrome they’ll maybe think I’m just a bit tired and that rest will cure me. Technically speaking, M.E. refers to people who have an inflammation of the brain stem, but how many of us with M.E. have been tested for that and can definitely say that’s what’s wrong with us?   

  My M.E. symptoms include extreme exhaustion brought on by minimal activity (even mental activity such as watching too much TV), insomnia, temperature irregularities (feeling very cold even on a hot day or suddenly feeling extremely hot on a cold day or having night sweats), migraines, joint pain, difficulty walking, dizzy spells and nausea. I also have mental confusion (also known as brain fog) such as memory loss and difficulty remembering words,  following conversations and concentrating on books or TV programmes.

  I personally don’t think that the term CFS should be used for those with symptoms such as mine. CFS can also cover those who simply (lucky them!) have exhaustion. Using CFS as an umbrella term for everyone causes confusion amongst sufferers, the public and, worst of all, researchers. A recent study caused newspaper headlines such as ‘Talking and exercise cures M.E.!!!’. It turns out that this study was only done on those who had chronic fatigue, not those with M.E. symptoms who were too ill to travel and take part in the study.

  I think it’s a shame that this debate causes divisions amongst M.E. sufferers. Whatever our illness is called, we need to support each other not end up in slanging matches, which achieves nothing.

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Responses

  1. I forgot to add (brain fog!) – I also have sensitivity to bright light and loud noise, M.E. is classed as a separate illness by the World Health Organisation and a few people (3 I think) have died of M.E. and have that on their death certificates, not that they died from CFS. It’s only once someone has died and an autopsy is done that medical professionals discover the brain inflammation.

  2. Here here, Eramys…we’re all in this together. If we can’t support each other then what hope is there to gain clearer understanding from ‘out there’? xxx


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