As my regular readers will know, I can and do say what I think, however I don’t mouth off for the sake of it, I only speak out when I think something needs to be said. To right a wrong. To redress the balance (or bring some balance, which is often in scant supply on t’internet).
Charities do a wonderful job. They are led by selfless individuals, who work tirelessly and genuinely want to help others either less fortunate than themselves, or in a similar position to themselves. They are run on a shoestring and involve long hours often working for absolutely nothing. Having been a volunteer of various charities since I was a teenager I know what’s involved and applaud, without reservation, everyone involved.
That being said, what the hell is EDS UK on at the moment? First of all they allow the Low Histamine Chef to do a 2 page spread in Fragile Links, when she doesn’t bloody well have Ehlers-Danlos and now they allow one of their employees to imply that ME doesn’t exist and anyone who thinks they have ME actually has some other disease they simply haven’t found yet. Seriously. I am FURIOUS, not to mention hurt and upset.
In the spring edition of their magazine, in an article entitled ‘The Psychological Bin’ Cathy Collier writes:
“I found that people with ME could really have any illness, physical or psychological” and “let’s just say that a dustbin diagnosis like ME can be convenient”.
It gets better.
“I knew (some people) with ME were fortunate enough to subsequently find out what they really had, but most will remain in that psychological bin for the rest of their lives”.
I hope she knows just how much she’s pissed off an entire illness community and I’m fairly sure the ME Association will have something to say on the matter. I myself have a shed load to say, but will save it for a day when I am less mad and don’t want to use the F word in every other sentence. I thought we were past this shit y’know?