I was very ill in my 20s. I spent a huge amount of my time alone and in pain. My sleeping pattern was entirely inverted. I remember I used to count off the years by the number of times I'd seen the Open University program on the third and fourth derivatives of position, Jerk and Jounce.
At around this time British medicine started broadcasting unencrypted training videos for GPs and I was excited to see that there was going to be one on CFS. But as I watched I found I was considered a "heart-sink" patient and that the recommend treatment was inappropriate to my situation. There seemed to be little point in ever raising M.E with any doctor ever again.
After watching the video it really hit me: No-one was coming. No-one was coming to save me.
And this was true for many M.E patients isolated by crushing symptoms and social stigma, we were left in pain and alone.
When I got access to the internet in the 1990s I resolved to be there for other M.E patients. My motivation was clear: Other patients would not have to feel so alone. There would be someone for them to talk to. And, thousands and thousands of people made contact. And, though it was incredibly hard to write replies, (I was very very ill), I was pleased to be there for them. They were not as alone as I had been.
After a number of years I reached a limit as to what I could do. My own health was too low to support the effort and I took a long break. When I returned my motivation was very different. I had seen first hand how M.E patients were treated by family and friends. I had discovered the utterly awful things that people were thinking and saying about M.E patients behind their backs. More than this were the awful, awful, things such prejudice was leading people to do to M.E patients. It made me feel so angry, yet anger is so useless. I thought it far better to channel any and all rage into productivity. I became an advocate for M.E patients. I was known around the world. It is almost too embarrassing to relate my reputation, (almost), for I was well-known for being witty, intelligent and kind. Isn't that incredible?
I worked very hard. I pushed out 10 original thoughts about M.E every day, three photographs and a joke. I backed this up with a resolve never to block M.E patients and to try to reply to every single person who wrote to me. Isolation had become less of a problem for many people with M.E at this point for social media had provided a means for all but the most severely ill to come together, but there remained the huge problems of research bias and apparent medical mistreatment. It seemed as if those of us with the capacity had a duty to the most severely affected, to at least try to raise awareness, funding for research and to challenge medical dogma.
I wrote articles, websites and 50,000 tweets. I was driven by a sense of outrage as to what was happening to M.E patients. I spent hours and hours of every day considering the issues and, perhaps most importantly, I went and I met those involved - on both sides of the argument. People were very generous with their time. My effort in travelling was, more often than not, rewarded with many hours of constant, exhausting and exhaustive one to one discussion of the problem. I was literally talked horizontal during one 8 hour marathon conversation. Of course, as a result, I learned a lot about M.E and the acrid political miasma that clings to the issue.
My motivation for writing for M.E patients now is again very different. There are two reasons why I am bothering to create this text rather than getting on with the rest of my life. Firstly, I got better. I got rid of M.E. To walk away without at least attempting to share how I did this, seems to me to be unacceptable. Despite the threats and vicious abuse I now receive from patient activists, I cannot move on with my life in the knowledge that I may be leaving M.E patients to suffer.
The other strand to my current motivation is the simple fact that I believe that M.E patients are in a much worse situation now than they have ever been.
It is all very well to suffer neglect, isolation or attacks from family, society and from physicians, however M.E patients now find themselves in a predicament that is almost too awful for them to process:
M.E patients are targeted for abuse by their own activists.
I found M.E charities concealing the bullying of M.E patients. I found university professors allied to activism promoting personal attacks and/or denying the fact that they happen. I'm afraid the M.E patient community has suffered a take-over. Even from my starting position as a well-known patient advocate with thousands of followers and a network of contacts throughout M.E, I could not successfully encourage leading M.E patient activists and charities to reject personal abuse as a methodology. Activists want to have it both ways: to be at the table discussing the science and hammering at the gate branding patients and researchers liars and Nazis, respectively.
Aside from humiliating all M.E patients and rubbishing their attempts at science, this tack leaves both patients and those who attempt to help them liable to suffer great harm.
It is simply unsafe to research M.E right now.
Any researcher is but one unwelcome conclusion away from what the founder of one charity described to me as "vicious personal attacks from M.E patients", and another simply as "bullying". Yet another charity founder posed the obvious question... Why does our community keep doing this?!
The effects of sustained mistreatment have hurt many doctors and many M.E patients and patient advocates. It is a reason such people refer to the politics surrounding M.E as "a horrible cauldron", "a torture chamber" and "a cesspit". It is one of the major reasons why the wider community often steers well clear of M.E patients and M.E patient activists. If you brand a journalist on a national newspaper "an incurious little sh*t" you cannot expect anything other than accurate, widespread, reporting of the abuse. The M.E patient community as a whole is, all at once, unfairly stigmatized for laziness and fairly charged with abusive behaviour. As a friend once gently tried to tell me: the M.E community has a worldwide reputation for abuse.
One particular problem with the cruelty arising from within the community is that M.E patients know how best to hurt M.E patients. They know that simple disbelief harms an M.E patient on many levels and, more often than not, leads on to unjust sanctions that serve to heap additional misery and suffering on to those so targetted. Patients know that actions to discredit an M.E patient as "crazy" will lead others to dismiss what they have to say. And, M.E patients, so long neglected, know that the silent treatment encourages a broad and long-lasting social-shun. M.E patients know the vital importance of a support network, and they know how to cast other M.E patients back into the shadows of severe M.E without a voice. It is utterly despicable behaviour.
This state of affairs leads me to feel such sorrow for those people with M.E who as yet maintain moderate, kindly, and peaceful behaviour. If they are targetted by leading activists they cannot defend themselves and their own community will attack and reject their reports of harm. Nor can they stand up for their friends, for to do so would be to speak of the widespread abuse problem within M.E activism and to therefore make themselves a target. Unless they buy into activism's dogma, they are not allowed to speak freely.
I think M.E patients should not be called insane, lying, assh*les by their own representatives. I think that M.E charities and advocates should stand up and challenge such mistreatment. And this is what I did. When I found a group of M.E patients targetted for public demonisation, I stood against it. I am sorry to report that this action shredded my incredible reputation (above) and left me alone, ill and in exile. I knew it would. And I would do it again in a heartbeat: M.E patients deserve better treatment than to be used and abused as pawns in other people's power games.
My feeling is that abuse of M.E patients can only now get worse and, within the context of many societies' increasingly hostility to those with disabilities and illness, I think M.E patients are in a lot of trouble. I am very glad to have got better. I am very glad to be rid of M.E. It is vital that as many M.E patients as possible get as well as possible right away. There is, I suspect, simply no time to wait for the never-neverland of research. And there is certainly no time to wait for the journalists and charities allied to patient activism to tell the whole truth.
I have seen M.E patients attack and harass doctors while they recover from operations and even COVID19. I have talked to them about the death-threats they have received and how they feel stalked by M.E patient activists. After decades in M.E patient advocacy and having seen that it is impossible to report abuse and harm to the M.E patient community, I have drawn my own conclusion:
Right now, this moment, all of an M.E patient's energy should be being put into improving their health, for the energy patients put into activism is currently being misused.
People with M.E should not be abusive to doctors or to patients.
So. In Summary:
My motivation began as a desire to ensure that M.E patients were not left isolated and alone in pain and darkness. It changed as I realised the true extent of social and potential medical mistreatment. And finally, I find myself now motivated by the increasing and pressing need for M.E patients to get better as soon as is practicable.
To each of these ends I worked for people with M.E.
I made myself available to thousands and thousands of patients over two decades. I was so pleased to receive kind messages of support in response to my efforts:
"Thank God, there is someone who understands!"
"Thank goodness! - I'm not alone!"
As a patient advocate I worked to give M.E patients a toolkit, or if you like, a suit of armour: Words that could protect them from the worst of the barbs from family, friends, and physicians.
And, in return, 150 M.E patients came and wished me a "Happy Birthday!" at a time in my life when I was almost too poor and too miserable to survive. The M.E patient community encouraged my work and photography, and they even helped me to quit smoking through the wearing of a huge assortment of hats:
I will not know the M.E community's response to my efforts this time around, for I have had to go "no contact", permanently, in order to protect myself from abuse from patient activists and charities that drove me to the limits of human tolerance. I hope, however, that the work here will help patients to improve their lives and their function in a world that increasingly demands it, with menaces.
I further hope that M.E patients will listen to and retweet my message, @ahelluvabird. After publishing almost a thousand videos standing against abuse my view is as firm as ever. My intention is to continue to publish the message until the day I die. Scientific research and M.E patient advocacy must be founded on the rejection of the abuse of both patients and doctors.
In each case my motivation has been to try to help other M.E patients avoid the depths of suffering that I experienced during my thirty-five years with M.E:
I do not want people with M.E to be alone.
I do not want people with M.E to be mistreated.
I do not want people with M.E to suffer harm, most especially, at the hands of their own community.
I want you to be well and to that end I feel a duty of care, a responsibility, most especially because I have information that M.E patients do not.
TLDR Summary: M.E brings with it pain, isolation, medical mistreatment, a wicked social stigma, and ruthless, targetted, abuse from mainstream M.E activists. It is more important than ever to share how I got better.
Update:
In regard to the GP training video I mentioned at the beginning of this document: I knew it wasn't for me. But, looking back with some degree of wisdom, I can see now that it wasn't for me - *at that time*. It is strange to have come full circle: to see no-one coming to its creators' aid and then to commit to standing up for them as well.
