In 1985 I was taken seriously and severely ill, and that is how I learned about ME. It was sudden; the virus that invaded my body, also robbed me of brain function. My virus was identified in a research programme to be a relation of polio myelitis, that terrible disease that once paralysed and killed children. It took my career as a head teacher, my sport, my dance, my ability to run the family home. It plunged me into constant, burning, neuropathic pain, made me topple downstairs when my brain forgot how to put one foot in front of the other, caused blackouts and collapses, and turned bits of me to lumps of unfeeling dough. My muscles were like water; light and sound were intolerable.
It is an unfortunate fact that the most enlightened, well intentioned and thoughtful professional will not be able to internalise the unimaginable horror of this. Please accept at the outset, that if you have not personally experienced it, you will need to take it on trust that the level of fragility of any apparent improvement makes ‘rehabilitation’ into some kind of sick joke. Don’t be hoodwinked by such talk. ME causes greater debility than many other severe and chronic diseases, children’s quality of life is worse [1] and rehabilitation too often equals exacerbation. You can all too easily push a child’s ME into severe ME.
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