Every so often I will state a fact. I may say something like I did in the previous article:
"The founder of an M.E charity wrote that I was to be left to be bullied indefinitely so as to protect the work of activism as a whole."
Whenever I do this; I check the analytics and see how many thousands of people have read the information. And then, I wait for them to ask me for clarification. So, in the above example, the important information is exactly *which* charity I am talking about, because obviously this charity cannot be trusted.
What's amazing is just how few M.E patients bother to ask. Now, I understand, I have made it more and more difficult to speak to me as time has gone on. And to be fair to me, this is in a large part to the volume of abuse I've received. However, it is alarming and depressing to find that M.E patients don't ask questions about matters that their lives literally depend on.
M.E is a vexed question of health, of stigma and of (mis)treatment.
M.E patients are not going to get better where their charities are suppressing vital information and even the voices of M.E patients themselves!!
M.E patients are not going to shed the cangue of their social stigma where their representatives are out in the world humiliating all M.E patients with appalling and abusive behaviour.
And in regard to treatment, M.E patients may claim that they want to be treated well, but you know,
I've read M.E activism 'blogs and forums where the mistreatment of M.E patients is considered just fine.
Seriously, you have to want to get better. You have to really, really, want it. You cannot reject mistreatment from medicine while accepting the very same mistreatment from charities and activists.
It's so weak.
I can see why the M.E community's favourite journalist doesn't ask: his whole position is that a group within medicine have made a poor study. F-ck them, he says. But this study and the conduct of its authors is now a miniscule footnote when compared to the public promotion of the abuse of research rivals emanating from a researcher far too closely allied to M.E patient activism.
I can see why charities don't want to know. In the UK they appear to be heavily politicised. Within them agenda overrules humanity and strategy overrules reports of harm from mere patients. I was thorough in my investigations. I spoke to the heads of at least six M.E charities, either by email, telephone or by meeting in person.
I can see why activists don't want to know. It is easy to camp outside your national health department and shout blue murder and take your shoes or your clothes off. It is far less easy to find out that the head of what is probably now the most well-known M.E activism group in the world, says (behind closed doors) that abuse from patients and patient activists is the problem, not the NIH etc. Goodness. I hope they can sleep at night while they send out so many disabled and ill M.E patients on what they privately believe to be a fool's errand.
Do you see?
" the head of what is probably now the most well-known M.E activism group
in the world, says (behind closed doors) that abuse from patients and
patient activists is the problem, not the NIH etc.."
How many of you will bother to fact-check this statement? How many M.E patients really, really, really, really, want to get well?
The number is, I'm afraid, vanishingly small.
I guess what I'm saying is that I expected more from M.E patients. I expected them to work to get well. Yes, of course I know what that means. It means the misery of PEM, but you know, I expected you to choose to suffer it, in order to get the knowledge, the information and the insight that you need, *individually* to get well.
In Make Haste I tried to make the point that you don't have long to get better. The days of sitting back, popcorn-in-hand, relishing the circus of it all as an entertainment are over. If you don't stand up for M.E patients targetted by M.E activists, then don't be surprised when no-one is there to stand up for you.
If you hive-out your science to researchers allied to activism don't be too surprised if the debate becomes so polarised, so aggressive and so dumb, that you too are not allowed even to report harm and not allowed to hear about recovery.
If you support the bullying of doctors and patients, if you believe that this will set you up for a life in the world to come; don't kid yourself. M.E patients will remain at the bottom of heap within a world where social status is determined by the vicious application of brawn rather than the considered application of brains.
You do not have long to get better. Ask questions and if I won't answer them, go find out the answers for yourself.
Do not rely on others to save you. Save yourselves.
