Monday 24th April – Sunday 30th April 2017 marked MS Awareness week 2017. MS Research would like to thank you for all of your efforts and contributions and let you know how we are working toward a future without MS.
MS Research Treatment and Education is a charity dedicated to furthering our understanding of MS and developing better treatments through research and education. With your help we aim to:
Listen to people with MS and those who share their lives.
Learn more about the problems they face every day.
Act to address and alleviate those problems.
Since last year’s Awareness Week a number of projects have been funded by your generous donations.
MS Research continue to run FACETS (Fatigue: Applying Cognitive behavioural and Energy Effectiveness Techniques) from our MS Meeting Point in the Vassall Centre, Bristol. The six week CBT based group therapy course, designed initially by researchers at Bournemouth University, is specifically designed to aid people with MS Fatigue* to manage their symptoms. It was extensively researched in Poole, Bristol and Southampton and rolled out at Bristol and Poole. Bristol courses are free of charge and available 3 to 4 times a year to anyone with MS coping with fatigue. MS Research are seeking to roll out this service at other the UK centres and to support training for professionals who wish to develop FACETS therapy clinics.
*Fatigue affects around 90% of people with MS and is one of the main symptoms preventing people with MS from remaining in employment. There is presently little effective medication for MS fatigue.
MS Research continue to contribute toward facilities based at the Brain Centre in Southmead Hospital enabling us to continue our support for research applicable nationwide. We also continue to fund a Physiotherapy Clinical Assistant and our MS research team’s Specialist Research Physiotherapist who work alongside the BrAMS (Bristol and Avon MS) clinical centre’s MS Specialist Physiotherapist. This has enabled us to develop the next level of treatment and research projects. Supported by the neurological team at BrAMS these roles will help to further promote our commitment to listening, learning and acting and to fund research and develop strategies to translate research into action for better treatment.
MS Research also continues to support the delivery of Functional Electrical Stimulation (FES) clinics helping patients who have foot drop to walk more easily. MS Research would like to extend the delivery of FES Clinics to more centres around the UK.
Research and Education:
iMSpire (International MS Partnership in Research) is a formally constituted research partnership between the University of West Paris, Nanterre, La Defense, the University of Bournemouth and University of Bristol as well as Southmead and Poole hospitals. Interest in collaboration arose in 2012 from French researchers seeking to translate and test FACETS locally. It has now grown to support multiple projects in functional brain imaging, speech analysis techniques and studies on the adherence of people with MS to new drug and therapy treatments. The iMSPire group is now formally recognised by Bristol, Bournemouth and Paris West Universities as an international collaboration bringing together a very strong group of committed researchers with the aim of continuing to develop a range of better treatments for MS symptoms.
For the past several years the iMSpire conference has been hosted in Paris and therefore the facilities available in the UK have not been visited by many of the French attendees. To remedy this MS Research Treatment & Education sponsored a conference in Bristol on 20th and 21st of June 2016 at the CRICBristol imaging centre and hosted by MS Research and Dr Jade Thai of Bristol University. Two days of intense presentations and discussions amongst some of the most knowledgeable international MS Researchers resulted in the establishment of new research proposals being put forward for funding through EU and national channels.
Representatives from MS Research attended the 32nd ECTRIMS Congress. Held in London between 14th and 17th of September 2016, ECTRIMS stands for European Committee on Treatment and Research in Multiple Sclerosis. ECTRIMS is an organisation set up to bring together scientists and clinicians across Europe to discuss the burning issues in MS, share experiences of treatment and present papers on the latest developments in MS research. Dr Rosie Jones and Angela Davies Smith were among the 9,000 or so delegates hearing news on latest drug treatments, new approaches to understanding MS and a huge variety of other presentations from worldwide experts.
Ongoing and New Research:
MS Research continue to fund existing long-term research projects to address and alleviate the problems faced by those living with MS on a daily basis and of course to find answers.
CRIC Imaging – we have provided a further two years of funding for Dr Jade Thai’s research into improving our understanding of how fatigue affects function using functional MRI Imaging (fMRI) of the brain. As well as scanning and research costs this includes funding a PhD student to analyse and present the data. The PhD post is jointly funded with University of Bristol. A further study on understanding how people respond to information about new treatments is planned.
Tremor Control – Tremor does not affect everyone who has MS but when tremor is severe it causes considerable problems with daily activities. Currently there are few effective treatments for this problem and coping with it is often a matter of finding ways to do things that avoid movement that generates tremor. Therapists, can help but we feel that more needs to be done to understand the nature of MS related tremor and to find ways of suppressing it. We have been working with University of Bristol engineering teams to make tremor measurements that will help us understand the problem more fully and, we hope, lead to better treatment and management of MS related tremor.
MS Researched have secured funding for a Tremor Management Clinic allowing patients experiencing MS Tremor to speak with specialists and access new tools for alleviating Tremor. We have also engaged an MS specialist Urology Nurse to further enable research into continence issues starting with a focus group held in March discussing urinary infections and their impact.
Core Stability in Wheelchair Users – a new project to help positioning in wheelchair users with trunk instability. There are many unwanted consequences of being a wheelchair user. We are starting to explore how we can help local NHS wheelchair providers to improve some aspects of wheelchair use. A Group of Bristol design engineering students are exploring the use of new materials and 3D printing to design and test support systems that move from wheelchair to normal seating with the wheelchair user.
MS Research continue to fund the MS Meeting Point providing a venue where people can come together as individuals or in groups to find out more about the resources available to people with MS and to attend occasional specialist information events. Our office and Meeting Point are open every week day and offers support and assistance for MS related issues or even just a friendly face and a cup of tea!
MS Research also attend various events throughout the year offering information and education about Multiple Sclerosis. From large professional events such as disability expos to WI and Young Peoples groups we are happy to share our knowledge and encourage awareness. If you would like to have a representative from MS Research visit your organisation please contact us and we will do our very best to make it happen.
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