I published an article yesterday discussing lying in M.E. Though I reserved judgement; I did make it clear that I think it is highly likely that a lot of M.E patients are lying.
Does this offend you? Will you block me on social media, reject everything I have ever done for M.E patients, and refuse to read anything else I write?
Okay. That's okay. Really.
Good-bye. Good luck. I hope you find the treatment that you need.
Do you know what the single most offensive thing I ever said to M.E patients was? The idea that cost me the most dear friends; the thing that lost me the most followers; the thing that cost me the most social capital:
People with M.E shouldn't be called "sick and crazy" by their own activists.
I know, right?
Seriously, if you don't like the above do unfollow this blog right now, because there's a lot more of this on here. Outrageous stuff like...
Researchers allied to activism shouldn't incite personal attacks.
And,
People with M.E shouldn't be abusive to doctors or patients.
These statements, really quite basic and obvious outside the M.E patient community are utterly contentious within it. And simply saying them loses you friends, allies and readers.
Okay. If I can't freely discuss science, or even simple matters of fact with you, then I cannot be of help to you.
It is better that you go in peace than to stay and listen and get yourself worked up. Seriously; as an M.E forum moderator explained to me: abuse is warranted. A surprising number of M.E activists reserve the right to harm anyone who they believe is harming them. Even though we don't know what causes M.E and we don't know what harms M.E patients. The belief alone is apparently enough to warrant sustained personal attacks. Discussion with such people is dangerous and I ask anyone who supports personal attacks to leave now.
Leave! There is nothing for you here.
Over my years as a patient advocate I spoke to thousands of people via email and I gained thousands of followers on social media. Almost none of these people helped me when I was sent threats. The grudge that I hold isn't big enough to prevent me from trying my absolute best to help these people to escape M.E, but there is a problem: My own escape, my recovery, was predicated on caring more about others than myself. I am not sure that I am able to help people who choose to leave M.E patients to suffer. Perhaps I'd like to, but the personal choice involved is just so huge and so selfish. It's a roadblock.
An M.E patient once privately explained to me exactly what's going on here: An activist who'd sent a particular set of threats and abuse to M.E patients was drunk, mad, abusive and whatever, but apparently M.E patients had decided to support him anyway, to see what they could get out of him.
In M.E even those who send abuse are abused.
On the other side of the coin are a small number of people who stood up and said that it's wrong to personally attack M.E patients and particularly dangerous to use stigmatizing words like "sick and crazy". These are words that devalue all M.E patients. These are actions that model bad behaviour and encourage and rubber-stamp the ongoing mistreatment of people with M.E within the wider community.
Why should others treat M.E patients well, when not even M.E patients can respect M.E patients?
And so, we find that I lose a whole raft of readers. These are people who I cannot help. These are people who don't even believe that the mistreatment of M.E patients is wrong!!
But you know; though I found it so hard and so upsetting, even this situation can be turned on its head. As people leave so the group that I am speaking to is narrowed down. If you can't sit down and discuss exercise therapies without sending abuse, good-bye to you. If you cannot say in public that it is wrong to call an M.E patient "sick and crazy", good-bye to you too.
And so we find a terrible sieve.
With this blog I am looking for the vanishingly small number of M.E patients who can, at this point, be helped.
If you firmly believe that recovery from M.E is impossible, then I cannot help you, good-bye. There is no debate to be had. It is really really funny. M.E patients, and even academics, come to me with Bolshie ignorance wanting to challenge my position. This is not some ridiculous undergraduate pissing-contest, with answers memorised from a book; This the business of the discovery of new science and new information. Let me tell patients something utterly terrifying...
There are no experts in M.E. No-one knows what's wrong with you.
There are just a set of very, very, clever people who've given an awful lot of their life to help to save yours. Many of these people have been repaid for their efforts with ruthless, sustained, vicious personal attacks from M.E patients.
It's a joke. A bad joke. The way M.E activists treat researchers and patients humiliates every M.E patient and devalues every single second of their suffering.
Currently, I hold the strongest intellectual position in M.E: "Reject abuse!" Listen; I made certain of the strength of my position all along the way. I have assimilated like a Borg cube. I have publicly and repeatedly apologised when I have been catastrophically wrong. I have publicly thanked others for correcting my views. And I have then gone on to use this newfound strength to defend myself and those who I care about. In short, I have allowed myself to change, to regenerate.
If you cannot change, if dogma holds you by the scruff of the neck, good-bye to you.
This is the sieve. Your behaviour matters. It is currently the only thing that stands between you and the abyss of M.E and seemingly endless social mistreatment.
Your choices matter.
Now, if you're the kind of person who reads "Your choices matter." as "He's blaming me for being ill" then good-bye to you. I cannot help you, please stop reading this blog right now. "Your choices matter" was written and sent out as an empowering turn of phrase. I want you well. If you twist my words and intent into something cruel, then that effect is happening in your mind, not mine.
Every M.E patient can work right now to recover their health and function.
If you are working on the science of M.E, put a stop to the bullying. Put a stop to it right now. If you are on social media, support those M.E patients who are in the most desperate of need. And if you are locked in bed, in darkness and in pain, keep going, keep living, and make sure you always know whether it is night or day.
My personal choices led me from being an M.E patient advocate known around the world to the misery, obscurity and loneliness of a community enforced shun.
And I would make the same choices again in a heartbeat!!! :)
I knew the moment I stood up for M.E patients attacked by their own side that my reputation would be destroyed. I knew that the M.E patient community attacks M.E patients. I knew that someone had to stand up against the abuse and with those so unfairly targetted... if only so that they were not alone when it really, really, mattered.
What I didn't know at the time was that this genuinely selfless choice was going to lead to my own recovery from M.E. But I do now!! So, yeah. I would make the choice again, for others and myself!! Duh!!
Seriously. I got my life back simply by standing against the abuse of doctors and patients. It was a chain reaction. Once started nothing could stop me.
And so, the sieve is a terrible thing. I know this. I fought against it for years - I had to make certain that this patient community really were choosing to bury patients in the walls of activism. I had to know that living human beings were being sacrificed for empty strategy and cold, hard, dogma.
As one charity founder wrote: "It's business James, business".
I had to know that my one-time friends and allies really were sure about this gigantic decision. And now I am.
To everyone; To every single person who would watch or choose to send an M.E patient back to indefinite pain and isolation I say a sad but firm good-bye. To everyone else I say:
Hello. I'm not a doctor.
