Once again a huge thank you to all those members of ME North East who volunteered to complete a rather long series of questionnaires about symptoms they experience. These questionnaires have proved extremely useful giving us evidence that control of heart rate and blood pressure may play an important role in CFS/ME. So far the data has been presented at the European Union of Geriatric Medicine Societies in Geneva in August and is currently being prepared for a scientific paper.

In summary the results confirm that symptoms directly attributable to autonomic nervous system abnormalities are over 2.5 times more common in those with CFS/ME compared to an age and sex matched control population, and that the more fatigued you are the more autonomic nervous system symptoms experienced.

One of the key problems that patients with CFS/ME face is standing (orthostasis). Inability to remain standing due to symptoms, or the development of signs (such as low blood pressure) are considered to be diagnostic of orthostatic intolerance (OI). Data from the returned questionnaires suggest that OI is a problem in 89% of those with definite CFS/ME. This begs the question whether OI, and the autonomic nervous system abnormalities that underlie it, could in fact be diagnostic of CFS/ME and used to target interventions, particularly if its biological mechanisms could be understood, funds are currently being sought to study this further.

The team based at the Falls and Syncope Service at the University in Newcastle are now inviting people with CFS/ME into the unit for some tests of heart rate and blood pressure, and we are extremely grateful to ME Research UK for funding this work. The hope is that over the next year we will perform these simple, non-invasive tests on at least 100 people with CFS/ME who fulfil the Fukuda diagnostic criteria.

In addition the Northern Clinical Network for CFS/ME has very recently agreed to fund a small pilot series of studies of brain and muscle MRI in 10 patients with CFS/ME which will take place at the newly opened Newcastle MR Centre.

All in all, it is a very exciting time for CFS/ME research, we are confident that in the next few years our understanding of the biological processes that underlie CFS/ME will be better understood. Many thanks again for all your help and we look forward to working with you in future.

Dr Newton will continue to provide updates on the further components of this study and an outline of the recently funded pilot study on brain and muscle MRI, will appear in Winter Focus.