Each and every day I upload a message to the 'net. The message is very simple and direct. It is a bit of advice. It is a bit of good advice. I plan to send out this message every day for the rest of my life.
"People with M.E should not be abusive to doctors or to patients".
This is going to be a difficult page to write. I am going to need to describe just how low I was brought and just how dangerous I believe M.E patient activism to be. This will take time. Bear with me, check back whenever you remember.
M.E is a betrayal of expectations. You have what appears to be a healthy body and you expect it to work. When it does not, you expect help from your physician. You expect help from your family. You expect help from your community.
It is not overly "entitled" to expect minimal validation of awful symptoms from physicians, family, and community. Sure, there are greater expectations here, medical investigation, financial support and research funding, but far and away from these pipe-dreams we find that the chronic mental and physical effects of M.E walk hand-in-hand with chronic doubt and even mistreatment from others.
Sure, you may find a sympathetic doctor, family that will support and even fight for you, and you may find a community that listens to you, values you and gives you strength, but... You cannot expect these things. If you do, then like me, you will suffer blow after blow after blow, as the lesson is forcibly taught to you.
In reality, your body does not work as others do, and friends, family and physicians may share a common and devastating human trait: they may fight the truth, and by extension they may fight the truth of your experience with illness and they may end up fighting you.
A person with M.E has two huge problems: How to survive M.E and how to survive the loathsome and harmful social reaction to it.
I will try to add more here later. Until then, take a look at my message if you want.
To a clear head the truth is obvious: If you do too little your body will rot. If you do too much your illness will consume your health and happiness. The extremes are your enemy. Extremism makes M.E patient activists ignorant, ill and impossible to relate to.
As you wield the ring of power, as you attack, betray, exploit and harm others, so you naturally lose friends, freedom, diversity, respect and self-respect. But the saddest thing about extremism is that you no longer care: The exhilaration of power displaces even love within you.
No-one ever managed to explain to me why it was right, and good and proper for M.E activists to target M.E patients for ruthless personal abuse and threats. That is because, I conclude, such behaviour is truly evil.
And with this terrible insight we can at last address the crux of the issue within M.E: Why has this world added hunger and abuse to our decades of suffering through illness?
One does not need to look to medicine for the answer. One does not need to blame government nor target individual physicians. M.E patients attack M.E patients. Their research allies block free discussion. Their charities and groups withhold vital information.
They don't care.
Currently, I am trying to express here just how dangerously low M.E charities and activists brought me personally.
But I am running up against a concrete wall of "I can't be bothered". When I write about M.E I get a million views. But to me that's two million empty eyes who do not care enough even to check that I am okay.
In case I do not finish this article, fellow M.E patients, there is a reason why I now climb mountains and you do not. I made very different choices, and the single most important of these, I share with you each day for the rest of my life:
People with M.E should not be abusive to doctors or to patients.
It's not good enough is it? Somehow I have to find the strength and the compassion to open my heart once more to #pwme and tell them exactly what trying to help them was like. The absolute desolation of it. The despair and the danger of M.E activism.
In honour of one of the great M.E advocates, the text I will write for you will be entitled: "my blood on their hands".
"Hello. I'm not a doctor. The content of this website is my personal opinion, and should never be treated as professional medical advice.
If you want to chat, it's best to contact me via Twitter here: @ahelluvabird. Please don't talk to me about the condition, M.E, though.
Unless otherwise attributed, all images, text, videos and music on here are my own work."