The last few months have been very busy and also very exciting with the research that we have been doing here in the North East. We have recently finished a couple of very important projects, the results of which we will be describing in more detail in future editions of this Newsletter.

The first was the tilt training studies that people have been very kindly helping us with. 39 people with CFS/ME were randomised to participate with either active home orthostatic training or a sham version and the results from this are looking very exciting and will certainly inform a larger scale study. We have shown that tilt training does improve orthostatic intolerance in patients with CFS/ME so the hope now is to extend this work to see whether by improving orthostatic intolerance, that this also leads to improvement in symptoms – so watch this space. We are very grateful to the local clinical service for the funds that allowed us to develop this project and to Katy Sutcliffe who is a pharmacology student at Newcastle University who obtained a Nuffield Foundation Vacation Bursary that allowed her to be the pair of hands that we needed to facilitate the research.

The second thing of interest is the MRI studies. Many patients have helped us with these having both muscle MRI and cardiac MRI and we are now analysing the results of the cardiac work. The muscle MRI work shows that patients with CFS/ME do have problems getting rid of acid from their muscles and we are hoping to look more fully at that in subsequent studies in the hope that we will be able to come up with ways to improve the removal of acid as a means of treatment.

A couple of other things happened in January. About eight months ago I was invited to be one of the speakers in Café Scientific, this was quite a daunting prospect as I was told that I was allowed 20 minutes to speak and that the remaining hour and 40 minutes would involve direct questioning from the audience. I wasn’t allowed any props or slides so it was entirely off the cuff. Despite feeling a little daunted at the prospect I really enjoyed the evening and feel that such a question and answer session may be something that we should do again sometime. The audience was very mixed but full of people that I recognised as either patients or friends of patients, so I felt very much that I was with like minded people - so thank you to all those who came along out of interest and to show support.

The second thing was that I was invited to speak at the Scottish Parliament by Action for ME. This involved me talking to the Scottish Parliament Cross Party Group for ME who were interested to hear about the research that we are doing in the North East and the clinical service that we provide here. They had a lot of questions and some of what we discussed is to be produced in their magazine ‘Interaction’, so if you can get hold of a copy of that you will be able to see more of what we talked about.

Finally, in January something that made me feel very proud to be doing research with patients with CFS/ME was seeing the beautiful photographs that were produced by Juliet Chenery-Robson, which were displayed in the Sunderland Contemporary Art Gallery. Juliet has been doing an
MA in Photography and has really focused on the lack of understanding regarding the basis of CFS/ME. She came and took many photographs of the Unit in Newcastle and the MRI scanner where we do many of our studies and the photographs that she has produced are very poignant.

All in all things are moving and I will keep you informed.

Julia