Why the term ‘Chronic Fatigue Syndrome’ annoys the life out of me


Photo taken from here

The clue’s pretty much in the name- Chronic Fatigue Syndrome. But this only touches on a fraction of what people with CFS go through. How about the ironic and utter inability to be able to sleep half the time, especially at night? How about the headaches, nausea, muscle aches, bone aches, brain aches, brain fog and the inability to be comfortable with light and sound?

This is why the term ‘Chronic Fatigue Syndrome’ annoys the life out of me. The term ‘CFS’ apparently is used today as an umbrella term to encompass all manner of illnesses in which fatigue is the main symptom, but to be honest, fatigue accompanies a lot of illness, none of which are even within the realms of CFS or M.E. In 1959, E.D. Acheson an early investigator of benign myalgic encephalomyelitis (M.E), wrote: “The wisdom of naming a disorder, the nature of which cannot at present be proved, and which may be due to more than one agent, is debatable.” This is one of the many controversies surrounding CFS. Well said, that man.

I know we all get tired, I know that. In the end, I stopped telling people I had CFS, but just had a bit of a virus, so I wouldn’t have to deal with the, “Ah yes, I’m exhausted too” line. It just gets too much in the end, and you end up sounding like a stuck record, that’s if you have the energy to answer back in the first place.

In all of this, I’ve learned to practise patience. Patience that one day the medical profession might improve their consciousness and compassion towards everyone under this frustrating CFS umbrella. Patience that everyone who cares about you will care about you and not the strange stigma attached to CFS. Patience that your healing has arrived and will come to you.

Peace and love,

Katie     xxx

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  4. I can empathise Katie. My diagnosis is VWD type 1, which is otherwise known as ‘mild’, even though it covers everything from severe right through to normal. I no longer use mild and say I have type 1, because my bleeding can be anywhere along that scale at any given time (despite my clinical results). Here’s to clear language around medicine!

  5. Needed to hear this, along with your ‘surrender’ post on fb earlier. REALLY needed to be reminded to surrender and stop pushing. I’ve been ill for years but still struggle with surrender and ‘not pushing’ even when I’m about to pass out…!xx