Many people are intensely interested in what is happening in MS research. On Saturday, I was lucky enough to go to a Research Day held by Barts and The London School of Medicine and Dentistry, with UCL Partners, to hear what research they are doing and what it might mean for people with MS. This research group includes some of the top researchers in MS in the UK and they are keen to get people involved. The audience were mostly people with MS, their friends and family.
The day was held in central London. It had a relaxed feel and everyone was encouraged to go in and out of the talks whenever they wanted to – for coffee, a break or a chat with others. There were a series of Lifestyle Discussions that you could drop into. These were small informal groups talking about topics such as cannabis, clinical trials, sex, bladder and bowel symptoms. The main hall had the research presentations. Each was just 20 minutes long so the speaker had to keep focussed and leave room for the many excellent questions from the audience. Topics included:
- Genes and MS – how much does genetics play a part and how much is it down to other factors in the environment
- What happens at the very beginning of lesion formation in MS
- How MRI scans could be used as a quicker way to monitor MS in clinical trials
- How lumbar punctures could be made less painful (especially reducing the headaches experienced by some)
- Treatments for spasticity, especially what may be on the horizon
- Looking after bone health so minimising the impact of falls
The audience were introduced to (or reminded of, in many cases) the MS research blog run by the Barts and The London Neuroimmunology Group. This has seen a huge surge in interest over the last year. Lead researchers post their comments on the latest research, inform the audience of their own research activities and ask for comments on a whole range of topics through surveys and opinion polls. You can see the programme for the research day on their web site. Videos of the presentations will be available in due course.
There used to be an impression that researchers were unseen, perhaps beavering away in dark basements or ivory towers, and not always in touch with the people that their research aimed to help. Not now! This research day shows how willing researchers are to directly engage with the MS community and how much this is welcomed. I had a great day. I enjoyed all the talks and also meeting the many people who visited our stand.
Research days are organised by a range of groups across the UK especially MS specialist centres (where MS specialist neurologists are based), MS Therapy Centres and also local branches of the MS Society. I heartily recommend them as a way of learning more about research and also meeting like-minded people.
By: Jane, Information Officer