Correspondence Received in Relation to the ME Clinics

From: _________

Sent: 28 August 2005 13:34

Subject: Thank you 

Hi Sue - thanks so much for your email.

I was frustrated at missing the radio interview although my Dad heard it and had told me the gist of it. Firstly though; I'm sorry I never got back to you; I lost your email with phone number; and due to having a real bad patch I have had to visit the computer for just a few minutes a day for weeks now.

But at the moment I'm hoping I'm pulling myself out of the bad patch and am risking longer visits.

I was fairly OK with the course I attended a year ago now; but at the time I was desperate to try something, and was able to attend the course. (It would be impossible for me to do so now).

Since then I have had regular updates with my occupational therapist either on the phone if I've been housebound or in person when I've occasionally been able to go there.
But I have to say that I feel very let down as my therapist now wants me to be referred to a psychologist for further CBT, and wants me to undergo a graded activity programme to stop me functioning at such a low level. ( I have a letter from her which she sent to my GP stating that she is concerned that I will stay at my present level unless steps are taken to alter my way of thinking. I on the other hand know I am at this level BECAUSE of the physical symptoms!!)

When she spoke to me on the phone to suggest this next course of action, I have to say that I agreed at the time. I was unable to think 'on the spot', I always have a complete blank when this happens, and said yes because I hadn't had the time or energy to really think about what this would mean.

I have had no contact with her since, but intend to tell her that I have reconsidered. I do not blame her in any way; because this is obviously their way of 'treating' CFS (not M.E.) I feel very hurt and misunderstood.

It hasn't helped me to make my family understand how ill I really am!! 

I have more or less decided to go it alone; luckily my GP is fantastic and he has become my port of call when I'm overwhelmed by the symptoms (even if its just to talk).

I feel totally alone with this illness and manage the symptom 24/7 myself; somehow managing to do what I have to in order to keep the family home running (even if its directing from my bed) I think I will be like this for the rest of my life; and my fear is of getting worse. I think the only thing positive thing that the clinic gave me was to make me accept the illness and the need to give in to the symptoms (although as you know you can't do anything but give in when you feel so ill.).

I forgot to say that I've been ill 2 years now, after having a glandular fever type virus then a few weeks of feeling well and then a hepatitis b vaccine which floored me and I've been ill everyday since.

I realise how busy you must be looking after your daughter etc.

I quite understand if you are too busy to phone but I really do appreciate your email, and fully support your cause. If  I can help in anyway please let me know.

With very best wishes,