This is serious suffering going on here, and there is only me and my arms and my not knowing what to say after 17 years of relentless and deteriorating hell. And now the MEA have put out a document, entitled "Managing my ME" - a title that immediately made my toes cringe, a document which eases itself down, with a contented sigh, so smoothly, so comfortably into the NICE / Psychiatric paradigm, give or take one or two tweaks, don't you know.
You have to wonder, does anyone else inhabit the world of ME that I do ? Inhabitants of ME-land don't mention the "M" word at all, they are far too busy on their lonely quest, turning over rocks in the baking, blinding heat, trying to unearth some, any kind , of a test or a treatment; anything, that might help. God knows.
They are far too tired , their backs are whipped, are aching, from writing and writing and writing and meeting and meeting and meeting , with their local Health Authorities. Dealing and dealing and dealing, over and over again, with all the hooey; the kind of hooey, at least that's my opinion, that the MEA have just put out.
The hardest thing to deal with here in ME-land ? This pretense of doing something for you- be it advocacy, service delivery, needs assessment, leadership, when in fact your AFME's your MEA's , your PCT's are offering you