I want to give you an idea of just how creepy it can feel to walk within the "Uncanny Valley" of the M.E community.
I stand up for an M.E patient branded sick and crazy by an activist. I return to her website after months and months of work to find that every reference to me has been purged.
It's really odd.
I am worried about an M.E patient who's done huge service for the community as a whole. No-one will speak to me about her in public.
It kinda makes my skin crawl.
A well known activist comes to me and tells me that she has spoken to one of the people who sends me threats. She wants my phone number and will not tell me what was said without it. Later she claims she doesn't remember a thing about the issue. All I get is a smiley face.
It's creepy.
A friend in M.E sends me a board game for Christmas, simultaneously she is removing all evidence of the abuse of M.E patients from her blog. Happy Christmas James! Now you have one less leg to stand on!!
It's confusing, it's horrible, but above all, it's peculiar.
The editor of an M.E publication knows that I have received abuse from M.E patients and activists and writes wondering if I am going to end myself. A few short months later he has suddenly switched his view into absolute public attack.
Truly. It gives me the heebie-jeebies to think about it. It's crazy-making.
My best friend ghosts me on Twitter. Seriously; years of conversations done, bye-bye. I don't exist any more. Tough luck, James. Tear your glasses up in anguish, I don't care. I won't know. Because you don't exist any more.
Huh?
I have to watch some of the most well-known M.E patient activists say the opposite in public to what they wrote to me in private.
It's frustrating certainly, but mostly it's unnerving.
A well-known M.E charity blocks me on Twitter. A friend asks them to reverse the ban. The charity ends up telling me that they blocked me, to help me. What?
That's a bit of a weird thing to say, isn't it? In fact as I said at the time: It's mind-melting behaviour.
How many years should an M.E patient wait for an M.E charity to reply to a letter? If one charity kept you waiting that'd be useless of them, but... but... five? What if five M.E charities wasted years of your time?
That's spooky, Mulder.
I have an email apparently sent to a group of hand-picked M.E patient activists clearly designed to elicit discussion of how to respond and manage widespread M.E patient community outrage.
Wait, what?!
I can understand it when M.E extremists send me abuse about M.E;
It's the random abuse I get that's so freaky.
A journalist makes up a conversation that we're supposed to have had about abuse in M.E
Yikes!! Can they do that?! Is that what they mean by "The New Normal"? I don't like it.
I challenge the abuse of an M.E patient and M.E community silence, and I get a barrage of 65 tweets from an M.E patient activist. I don't think they sent even one to the person who actually sent out the abuse.
I used to think that M.E activism was a mob, a cult, but there's something much, much worse going on here: Something in the silence; Something in the shun; Something else in the shadows. Something that wants me to feel afraid.
Something that wants me to live threatened, abused, and in fear.
And this I will not do.
I will not live in fear.
I will not live under threats.
I will not accept abuse.
Above all things; these decisions are why I recovered from M.E.
You know that little tickle... like breath on the nape of your neck? You know, the feeling, the creeps, the heebie-jeebies, the tightening of the pit of your stomach: These are your instincts. And sometimes they are the difference between life and death.
Afterward.
We've been discussing instincts. The
rules here apply to me as well. Take a look at a selection of the 972
videos I have made standing up against M.E activists' abuse of M.E
patients and doctors. I trust your instincts to tell you exactly who and what I am.
