RED ALERT!
"Captain, an M.E Activist warship has uncloaked off the starboard bow."
SHIELDS UP. ALL HANDS: BATTLE-STATIONS.
After years and years of abuse and even threats from M.E activists and their *far-too-close* allies in academia, this is how I respond when approached by those who claim to represent the M.E patient community.
It is not a healthy way to live. I realised that communicating with M.E patients would have to stop. M.E patients were making me ill, physically and mentally.
There was no other option than to go "No Contact" with the M.E community.
But there's a problem: Having had M.E for 35 years; having been a patient advocate known around world; having got better from M.E... patients want to speak to me. I spent a decade going around asking good questions. I know things about M.E and M.E patient activism that it would take a patient at least that long to find out for themselves.
You cannot help being ill, but you can help being ill-informed.
The trouble is, M.E activism has degenerated. In many ways it behaves like a cult: the needs of dogma, tribalism, and leadership are put before the basic survival needs of individual M.E patients.
Senior M.E activists publicly demonised individual M.E patients. The M.E community looked on and did nothing. Evidence of abuse and the effects of abuse on patients is being suppressed by certain M.E charities to this day. One patient told me how they were "encouraged" to remove their thoughts about M.E by an activist, others described how they were stripped of their diagnosis and "othered" and shunned by their community, their support network, their life-line.
It is no surprise to find that often-times I am approached not with a desire to learn from my experience but to challenge or to weaken my conclusions with wordplay and the superposition of disinformation. Though stressful, (Shields up!), the process has become tedious and mundane.
It is not my job to fight off activists drunk on dogma.
I have already tried to share what I discovered about activism via The M.E Global Chronicle and many other places. People do not what to know. People do not want the information to be shared. Of course they don't. What I know ends this generation's activism efforts. They collapse under a single, simple, fact:
M.E patient activists threaten and personally attack M.E patients.
And, make no mistake about it, M.E activism allows M.E patients to be so treated for years and years. Medicine could, in a flash of Damascene inspiration, accept all of M.E activism's demands (even the ridiculous, extreme, unhelpful, core beliefs) but it would not stop M.E patients from being bullied, for bullying is already right in the heart of M.E activism itself.
Fundamentally; It is incredibly ill-judged to approach me for discussion while I am being threatened.
It makes me think that you don't give a damn about me. That it's "okay" for me to receive years of abuse. That your wants trump my needs.
I am writing this blog because I feel a duty of care. I will not walk away from a million M.E patients without giving them a million words with which to defend themselves - both from the extremes in medicine and from what is now mainstream behaviour in patient activism.
Please, M.E patients: I do not need discussion with you. I am here just to share what I learned.
If you agree with my stand against the vicious abuse of patients and doctors, retweet my daily message on Twitter @ahelluvabird. But, unless you know me personally, unless you have stood with me as I stood against the vicious, black-hearted madness of an enraged patient community, please, don't contact me.
When I was writing the work on M.E that would gain a total of 1.1 million views I received a constant stream of personal abuse from M.E patients and activists. M.E charities, national and international had sent me to suffer severe
M.E without a support network. I was utterly exposed.
As I say, M.E shatters a life, and as I was working, I also happened to be cold and hungry and ill.
This night, one of my tormentors took it upon themselves to gleefully point out my loneliness and isolation. The words were designed to end me. I was so bloody cold. The work was so bloody hard. But I pulled what was left of myself together and I said something very much like this:
And this feeling remains true to this day. I will never forget it.
This is what M.E activism is to me.
This is why the klaxon sounds.
This is why I will not speak to M.E patients.
M.E activism is that which targets and torments the very M.E patients it claims to represent. M.E activism attacks science and avoids personal responsibility. It is a major disaster zone.
And M.E activism is a cruel lie.
By telling you this, by warning you about M.E activism and M.E activists, I may have helped to save you, reader, from a decade of misery and suffering and bullying and pain. You are very welcome. This is my duty. This is my need. This is my job.
SHIELDS UP.
DEPLOY WARNING BUOYS.
