Hi Katie
I don't quite understand. You say that you were working full time at the moment of your first appointment, and yet during treatment over the next twenty four months you became worse ? That might not have been related to the treatment, but then again I am not sure I would have continued with the treatment, were my health to decline. Perhaps I have got the wrong end of the stick ? Apologies if this is so.
I have been to the clinic in Leeds, but let me qualify my remarks by saying that this was in 2006/7. Not exactly sure, perhaps because I am trying to forget.
You could find the ''CFS clinic'' under the Mental Health unit board that sits in the grounds. I don't believe that cancer or MS sits under such a board. Why not ? It is a reasonable question surely ? I want to get better, and I don't care how I get there; let me make that abundantly clear, but am I being vexatious in asking such a question ?
We have over fifteen thousand members on this board, and I've yet to see a thread saying, ''If it's a psychiatric illness I don't want to get better because I don't want anything to do with psychiatry''.
The fairy tale goes like this :
Let us go along with the patients narrative, we will keep quiet, we will not challenge them, we will not dismiss their concerns, but we will follow our modus operandi, because we know. We know best because this illness is an illness that can be treated effectively by breaking the cycle. And that cycle is one whereby they are trapped into inactivity by an irrational fear. That feeds into a physical breakdown of the body ( all the symptoms that are commonly referred to )
I am not saying that CBT might not help some. Indeed anything that helps has to be welcomed, but please let it be said that CBT will never be a front line treatment for this illness. And GET should come with a warning just like a prescriptive drug. In fact I would go further and take away GET as a treatment for this dreadful disease because it goes against everything I believe about this illness. I have never known a doctor to prescribe GET for flu.
Oddly enough I do remember talking to Sue Pemberton, and I vaguely remember anti-virals being mentioned, though I have no idea why, because it wasn't brought up by me. I could be wrong but did she think about Wessely's ''somatisation par excellence'' when she said that. Truly I don't know, because there were no blood draws for anything whilst I was there.
I don't believe in fairy tales, but perhaps dreams do come true. And if they do we will have scientists like Lipkin to thank, not an OT in a CFS clinic in the Mental Health Unit at Leeds.