As many people know, I have for some years now received vicious personal attacks and threats from M.E patients. Abuse from M.E activists is a commonly reported problem. Researchers, community leaders, and even journalists record bullying and intimidation often sustained over many years.
The single most personally insulting message that I received however wasn't being called an idiot, or a Nazi, or an assh-ole. It wasn't part of the orchestrated social shun that left me alone with severe M.E all over again. It was when an M.E patient came to me and simply said: "Who's paying you?".
Since the 1990s I have contributed over 32,000 hours of work to the M.E patient community. Unlike some, I have received no payment whatsoever for my work. I have done what I have done out of love, care and sympathy. I saw a desperate need and I tried my best to meet it even though I was, myself, very ill. I act out of service and, more recently, because I feel a duty of care.
The piercing spite, the rowdy clatter and the bruising wilfully ignorant cruelty evident right across M.E patient activism is simply that which makes it more difficult to help. M.E patients are, increasingly, allied to their illness. Perversely, they fight to be left isolated, ignored, and disregarded. That they are not simply jettisoned suggests the presence here of a stronger force than mere money.
