From the blogsite of the Northern CFS/ME Cinical Network, 15 November 2012.
by Zoe Gotts, PhD Student, Northumbria Centre for Sleep Research (NCSR)
This is a really exciting time to be a PhD student working in Chronic Fatigue Syndrome (CFS/ME). When I embarked on my research I really wanted to set about answering the questions that I believe are fundamental to our understanding of the problems experienced by those with CFS/ME and working in the Northumbria Centre for Sleep Research (NCSR) meant I could look more closely at the role of sleep in this severe and debilitating condition. Sleep is a significant problem in the lives of people with CFS/ME and sleep problems can help to maintain and even exacerbate existing symptoms. Until now, no-one has studied the precise relationship between sleep and daytime fatigue in a systematic way, which means this area still remains very unclear and under-researched.
In International M.E. Awareness week in May, my PhD research took a new turn. I was delighted to hear that we had been awarded a grant from Action for M.E. We were one of three biomedical pilot research projects to receive an award and the funding meant we could embark upon the 18-month study that we had planned for – the most detailed examination of sleep and hormonal functioning ever attempted in a CFS/ME population.
I am currently in the first stage of the project which involves interviewing people with CFS/ME about their sleep. This has been very enlightening for me to be able listen to patient’s experiences of their sleep and gradually build up a picture of common patterns or disturbances. I am now very excited and also fortunate to have the opportunity to go onto examine sleep from several angles in CFS/ME patients. The sleep assessments will commence in the New Year and we will be monitoring sleep for three nights using wireless sleep equipment in patients’ own homes. Levels of the hormone salivary cortisol will also be assessed upon waking and at points throughout the day.
Despite my enthusiasm to get started with the assessments, this is a very large study to take on within the time constraints of a PhD, but I am fortunate to have an excellent team of experts on board to help; Dr Jason Ellis (Director, NCSR and Consultant Sleep Specialist under Neurology, RVI), Dr Vincent Deary (Education Lead, Northern CFS/ME Clinical Network), Dr Mark Wetherell (Associate Director, NCSR and Psychobiologist) and of course Professor Julia Newton (consultant physician, RVI) who was also awarded one of the Action for M.E. grants for high quality research into understanding the muscle abnormalities that occur in people with CFS/ME. I have the best possible team behind me on this really interesting project. A project that not only will help us to establish a gold standard for how this kind of assessment should be done, but also improve our understanding and treatment of what remains a very poorly understood condition.
How fantastic that this researcher is so excited and keen to research this aspect of ME/CFS. The best of luck to her. This is exactly the kind of enthusiasm we need. Enthusiasm, skill and knowledge and good quality research (whatever the results may tell us).
Please remember, not everybody with ME sleeps a lot.
Many of us suffer from severe lack of sleep. Cannot get to sleep, cannot maintain sleep.
Also, not all of us suffer to the same degree at any one time.
It’s activity during the day that promotes stage 4 deep sleep. We cannot be active, stage 4 is not promoted.
Nothing in ME is really consistent apart from the inability to do stuff.