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ME - The New Plague 2


STRIPEYSOCKS BLOG (not part of the book!)



Posted on March 13, 2017 at 9:42 AM

Someone whom I respect, someone who has suffered the ravages of ME over the years, said to me: "In the UK we won't see this change in our lifetime." In our lifetime.

That cannot be. We cannot allow it. But I can see exactly what prompted that bleak assessment, and so, I'm sure, can you. Slip on your slippers and come on a journey with me.

In 1985 I was taken ill, suddenly, with a virus that crippled me and robbed me of brain function. It was identified by a research programme to be a relation of polio. It took my career, my sport, my dance, my ability to run the family home. It plunged me into constant 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.

Crawling, burning skin, then loss of sensation, twitching muscles and extreme weakness, all piled one on another until I was nothing but a useless body in a bed, soaked in toxic smelling sweat, evil and poisonous. I could hardly chew. And this was no week-long drama. The thing went on and on and on and on. All that kept me existing was sheer stubbornness, endurance, and an inner force none of us know we have until, in extremis, we tap into it, there at our core, the building blocks of life, the instinct to survive and thrive: somehow, to get there, one far off day.

We trust to our bodies to do the job because we have nothing else. No pills, no vaccines, nothing curative. And without people who love us and feed us, and bear with us for years throughout all this trauma, we could not hope to continue.

For a belief system to emerge which appears to insist that a spot of talking therapy will conjure recovery from such extremis is not merely laying a dumb, blind and ignorant path that leads nowhere, it is obscene.

Those who would perpetrate such a belief cannot, surely, have been where I have been? Visited the same country where nothing they know about modern medicine holds true? I came through the pit, the fire, the dark, dark underworld, and dragged myself back to tell the tale.

It's not total recovery. But it is certainly recognisable as a life.

I tell you now. I will not concede that there will be no change in my lifetime. I WILL see the UK repudiate these unconscionable injustices to families whose children are plunged into the same terrifying land of classic ME - myalgic encephalomyelitis, not fatigue. Who are told that it's their fault, that they're overprotective. Denied, belittled, accused, as they are, of fabrication. Told to ignore their child's pain and leave them crying in the night. When I say that this whole belief system is an obscenity, I know that thousands if not millions of people out there - that you too - agree.

Jane Colby

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