Before I restarted my work for M.E patients in 2011, I did two things. Firstly I went and sought the counsel of a world expert in abuse and manipulation. Once I'd stopped being a dick, he sent me perhaps the most inspiring bit of text that I've ever received. He probably sends it out to all the hopeless cases. I hope he does. It was excellent.
I also wrote to Prof Malcolm Hooper. The content of the letter is irrelevant, but the analogy I made, as an M.E patient of some 25 years back then, sticks with me to this very day.
To me, M.E was an oubliette: A cramped, windowless, dungeon. A cell in which I had been placed, not by illness, but by medicine.
I want you to pause for a moment.
I want you to consider the intensity of my experience as an M.E patient at the hands of medicine:
I felt like I had been bricked up and forgotten.
Whatever we say about exercise therapy, whatever positives we may come up with, I am aware that when a patient makes such an analogy, a catastrophic failure has occurred within medicine. This is a failure at the very heart of what it means to be a doctor. Doctors do not brick patients up into the walls and forget them.
Doctors help.
Years later I wrote to Mr Tom Kindlon. I warned my one time colleague in advocacy that I believed that M.E activists would become the very thing that they had set out to challenge. The warning was prescient. M.E activists, perhaps repulsed by their own mistreatment of M.E patients, went on to imprison those they targetted and, to this day, pretend they never even existed.
There is no greater failure than for activists to attack, disbelieve, bully and discredit M.E patients.
There is no greater abomination than for M.E patients to isolate and shun and brick up M.E patients into the very walls of activism.
Medicine does not know what M.E is like. Doctors try to imagine, but they've no idea how it feels to have assigned to you, your own personal daemon, 'ME. The antithesis of a personal trainer, this daemon's job is to beat and punish and humiliate every effort that you make, only remitting when you utterly comply and "choose" to remain rotting and still.
M.E patients do, however, know what this is like. They know the pain of isolation, character assassination, neglect and mistreatment. That's what makes M.E patients so very good at hurting other M.E patients. These actions are a failure at the very heart
of what it means to be a patient advocate. True advocates do not brick patients up into
the walls and forget them.
Advocates help. They can be the only thing between an M.E patient and desolation.
It was an honour to be your advocate, M.E patients.
I share my windowless cell with rejects. People who I stood up for. People who stood up for me. People who dared to challenge activism's tyrannical public abuse of doctors. And it is a strange thing: We live on a globe so whenever a cell is created, its walls always encircle both jailed and jailers.
Activism doesn't just reject people, it rejects ideas. It bricks them up.
One of the ideas that M.E activism rejects is recovery.
It was right here in the cramped, windowless cell that M.E patients, M.E patient activists and their newfound allies in research and journalism created for myself and others.
Like Pandora's Box, the only thing you guys left us was hope.
"It's from The Doctor."
"What does it say?"
"Geronimo"*
*The Pandorica Opens/The Big Bang, Doctor Who, BBC
