Name: Clair Coult

I was diagnosed with ME when I was 15 years old. I am now 30 years old. When I was 21 years old I saw a doctor at my local hospital's Pain Clinic. He did a brief examination and declared that I didn't have ME anymore and that I was unfit. The only way I was going to recover was if I did a course of physiotherapy. I knew he would label me a fraud if I didn't attempt it so against my better judgement I agreed.

At this time I was using a wheelchair outdoors and a walking stick indoors. My symptoms were quite severe and fluctuated a lot. The course of physio involved going the to the local hospital (using volunteer transport) twice a week to do a set of exercises. The transport arrangements were not well organised and I was often waiting up to an hour to be picked up or taken home.

I was given two pages of exercises to do. They were apparently the simplest and easiest they did. At my request I was supervised by an assistant physio, I would have been expected to complete all of the exercises on my own.

The exercises comprised of:

Sitting with 1KG weights on my ankles, raising and extending my legs for 10 repetitions.

Raising my arms above my head for 10 repetitions.

Raising and lowering my shoulders for 10 repetitions.

Holding a stick with both hands, extending arms and raising it over and behind my head.

Sitting on a wobble board and rotating my hips for 2 minutes

Standing at the wall bars and raising each leg behind me and to the side, for 10 repetitions of each.

Plus quite a few more exercises I can't remember the details of at the moment.

I was expected to complete all of the these exercises in the first sessions and increase the number of repetitions each session after that. In the first session I was unable to complete all of the exercises, I had to do the standing exercises laying down as I could not stand for that long. when I was taken home I collapsed through the door. I managed to crawl across the floor to the telephone to call my mother for help. This happened after each session.

The volunteer driver who took me to the hospital asked me one day what they were doing to me because they were making me worse not better. Over the 5 weeks that I did the physio my ME became much worse. I had no quality of life, I was just eating, sleeping and doing physio. I [was too ill] to do anything else. My pain had significantly increased and my mobility decreased. After 5 weeks my husband wrote a letter to the hospital telling them how ill I had become and that I would not be going to do physio anymore.

I saw the doctor at the pain clinic a couple of months after that for a follow up appointment. He mentioned the physio and his only comment was "I'm surprised you lasted that long".

Since then I have learned to pace myself and limit my activity and even though I am still quite severely affected by ME I have been stable for several years.