Today I am questioning why I bother to try to help M.E patients. My arms are hurting, but in addition it appears I also damaged my spine at the skatepark. As a result I find myself with far less patience than I usually have.
After years of mistreatment from patients, activists, charities and researchers, I am today wondering how much of of the nightmare of M.E is the fault of M.E patients themselves?
What do you need?
I am not asking what you want, the desire for revenge within the M.E community is strong, dark and insatiable: A generation of M.E patients lost half of their lives to bias and even cruelty within medicine and many patients now aim to spend the rest of lives getting even. I have no desire to be a part of any of this. M.E activism is garbage. The output from activists' allies in research is low grade.
I am asking what you need.
For my part, I am engaged on the process of repairing myself and living my life after M.E. Just the phrase gives chills. Three and a half decades on; there is a time after M.E?! That's amazing. That's brilliant.
Of course, after M.E, much of my life is in scattered, broken, pieces. There is huge work to be done. And it is exciting, it is fantastical, it is remarkable. After M.E, you really can repair things. You have the energy. You do not receive a beating from your illness whenever you try to exercise, to earn, or to be happy.
Unfortunately my needs and the M.E community's desires fell into opposition. One of the things I need is to remove those who bully me from my life. M.E isn't simply stigmatised, it is targetted. M.E is a seemingly inescapable weakness. It forces patients onto the back foot. It makes them ask for help. Over the years I learned a simple, awful, thing:
People don't tend to disbelieve you. But they will say it to hurt you. M.E patients are chronically bullied.
Having rejected M.E patient advocacy and protected myself from patients, charities and researchers, I have got much better. My mental health is improving. My outlook is improving. And my family and all who interact with me gain from the simple fact that I am not experiencing ruthless, endless, targetted abuse from M.E activists. It's cool. It was just what I needed.
What do you need?
As an M.E patient advocate my motto was "Rest, research and respect!". It is embarrassing to me now, to be so obviously biased, so obviously wrong. Of course M.E patients need the listed items, but their selection omits a whole half of the truth.
In reality, M.E does not magically release a patient from the basic human need for exercise. I was hopelessly biased and hugely unhelpful to call simply for rest.
M.E patients do not need research, they need fair and balanced research and this includes all approaches, even the psychological. It is true that M.E patients have been greatly hurt by those who dismissed their symptoms as if it were just in their heads. However, patients are hurt for a second time where they allow this experience to encourage them to block serious psychological discussion and analysis.
Finally; M.E patients need to behave respectfully. This is not to say that people with M.E should behave submissively, but that they do need to respect the humanity of those they address. When M.E patients branded a journalist an "incurious little sh*t" they weakened and humiliated themselves. They self-stigmatised. And of course, most importantly, they hurt the person they targetted. I know this because on a number of occasions I went and spoke to people while they were being abused and demonised by M.E activists. I went to check that they were okay. None were.
The need to smash through the endless roadblocks seemingly set to keep M.E patients in their place is healthy, but when it crosses over into a desire for revenge it becomes toxic, immoderate, and out of control. A UK charity runs a yearly biomedical M.E conference. One of their speakers told me that they feel stalked by M.E patients. When I tried to inform the charity of this fact, I was blocked.
As an ex-M.E patient and ex-M.E patient advocate I will tell you something:
Many of the roadblocks to your recovery come from patients, charities and researchers allied to activism.
This is an objective fact supported by evidence. Do you want to hear it? Most probably you do not. Abuse ends M.E activism. It unmasks it. It shouts to the world: "Stay away from us!"; "We are toxic!"; "We are dangerous!"; "We don't care for science!". It is important to recognise as quickly as you can that there is no limit to the M.E patient community's desire to conceal its members' abuse of patients and doctors.
What do you need?
I wanted the M.E community to face up to its problem: a problem that community leaders have privately recognised for years. I wanted the M.E community to reject abuse and, in so doing, demonstrate our love of science, of free discussion and for basic humanity. I wanted an end to the self-harm of abuse, its humiliation of sufferers and its trivialisation of decades of suffering. I wanted the M.E community to repair itself and to grow stronger.
I didn't get what I wanted, but I got what I needed: the truth.
It is odd: a million strangled lives; a million lonely heart-beats in darkness and pain. And yet, the cure, the treatment, the way out of M.E, will probably be expressible on one sheet of paper. Do you see? Our desires have no limits because they are about expansionism, they are about breaking new ground, or annexing (or stealing) others'. Our needs however are satiable because they represent a finite absence.
You just need to know how to escape M.E.
There is no end to the churn, the abuse and the audience's cruel hunger for virtual popcorn. M.E activism will go round and around forever. M.E is hell and the inferno of M.E activism is circular. Only the truth of the matter can bring an end to the vicious cycle.
I don't believe for one second that patients chose to be ill. It is not our fault that we were cast down into the labyrinth of M.E. However it is our responsibility to do all that we can to find our way out.
My "mission statement" as an M.E patient advocate was simple:
"SAY SOMETHING TRUE ABOUT M.E"
Like a thread or breadcrumb trail, I tried to share with M.E patients everything that I had found.
This is what you need: The truth. That is all.
Everything else tends to be a distraction, a roadblock or dispiriting abuse. There is a difference between understanding how the scientific method works and living through the process. When we work towards discovery we are liable to conclude that the truth is not merely waiting to be uncovered: It is guarded.
There is a clear difference between ignorance and wilful ignorance. The reason I didn't want to write for M.E patients today, and many other days, is because so many fought so hard not to hear even simple truth. So very many people chasing their endless desire to be right rather than satisfying their simple need to be proven wrong. So many wanting to demonise others for their failings, while rejecting the help that they need.
It is like watching men and women choose salt over spring water.
When we reject what we need in order to get well and instead endlessly purse our cravings, that is the moment when it becomes our own fault that we remain ill.
I want you to reject abuse. I want you to find the truth you need. I want you to get better. But, I see now that I do not need it. There is already enough information out there for any M.E patient to be able to greatly improve their situation. What I need is to protect myself from people who cannot bear to hear the truth spoken out loud.
There is a problem with abuse in M.E activism.
If you need to get better from M.E, you need to accept this fact.
But you can do what you want.
