In May 2015, I took part in a research study at The Imperial College in London. Study title: Slow-wave sleep and daytime functioning in chronic fatigue syndrome: effects of sodium oxybat.
The idea was to see whether the daily fatigue we suffer can be improved by helping sleep using the above drug.
My day began with lots of questions, but the team were really understanding of how much we can do at a time, and so were happy for me to call a halt at any time and come back to where we’d left off. Blood tests were taken, and the usual medical check up given. Early evening I was wired up, with connectors all over my head and body to record what went on while I slept. I caught myself in the mirror and I looked like something out of Doctor Who !
While I slept I was also recorded by an overhead camera and microphone which was manned all through the night. Somehow I did manage to sleep despite all this, although it was the usual ‘ME sleep’ and so I was awake pretty early and had to call for someone to ‘de-wire’ me earlier than the usual time as I was totally awake and needed to get out of bed.
To cut a long story short, they found various things that meant I wasn’t suitable to take part in the full research programme which would have been carried out over two one week periods. They found that I had Restless Leg Syndrome, a thyroid issue, as well as some sleep disturbances that needed to be checked out. On return home I had these issues checked out through my GP and hospital and although these are still ongoing, it has been found that I have sleep apnoea, restless leg syndrome and an over active thyroid.
Even though I wasn’t able to continue with the research it was more than worthwhile taking part as far as I did and would highly recommend it to others who are able to do this. All travel expenses are covered, and so it’s only your time and energy that’s needed. I will warn however than I found it physically hard and did suffer when I got home, taking a fair while to recover from the exertion of the travel from York and the whole experience.