MS Trust funded research
Open Door - May 2008 pages 8-9
Many people still think that MS research involves scientists in white coats with test tubes, MRI scanners and long medical words. Of course 'pure' research is essential if we are to understand more about the causes of MS and find new ways to control and perhaps even prevent or cure it.
But increasingly the value of research aimed at living better with MS is recognised - research which brings essential therapies to people who have to cope with MS every day of their lives, or which demonstrates how better services can be provided. One of the main objectives of the MS Trust is to provide funding for this 'applied' research - research that can make a difference to the lives of people who are living with MS now.
This article gives an update on some of the projects supported by the MS Trust which have recently completed or are just beginning.
Recently completed project
Vibration therapy in multiple sclerosis: a pilot study exploring its effects on tone, sensation and functional performance
Revive Scotland/Glasgow Caledonian University School of Health and Social Care
Increasing numbers of people have been asking our Information Team about whole body vibration machines, which are now available in many gyms. We were delighted to be approached by a research team who also wanted answers to the questions of safety and usefulness of this therapy for people with MS.
Twelve people completed this small pilot study. They carried out a set of exercises with and without vibrations, for a fixed number of sessions over a three month period. Several different measures were used to evaluate and compare the benefits of the two exercise regimes. For most of the measures there was a wide variation within the group, reflecting the range of disabilities of the participants.
In general the results demonstrated small improvements following both exercise alone and exercise combined with whole body vibration (WBV) but there was no indication that the addition of WBV provided any added benefit over exercise alone.
Although WBV did not lead to a statistically significant improvement in the measures, comments from the participants were generally positive. People reported fewer spasms at night, better sleep, improved ability to climb stairs and better sensation in their feet.
Of critical importance from this small scale pilot study was that, whilst there was no significant benefit to using WBV, there were also few adverse reactions and those which did occur were not due to the vibration itself, with one exception where the vibration caused a flare up of a pre-existing knee condition.
Further larger scale studies into the effects of WBV in MS are essential. Research is needed to identify the best ways to use WBV, such as length of time vibration is applied, number of exercise sessions, and frequency or amplitude of vibrations.
A full report of the study is being prepared and will be submitted for publication in a medical journal.
Current projects
Advanced multiple sclerosis and family relationship processes
Institute of Neuropalliative Rehabilitation, Royal Hospital for Neuro-disability
MS affects the whole family, not just the person with MS. People who are very severely affected by MS and can no longer be cared for at home may be admitted to a nursing home. Families may have struggled, sometimes for years, to meet the care needs of the severely disabled family member and when that person is admitted to a nursing home, there can be a real sense of failure and of abandonment of the individual.
This study aims to increase understanding of the dilemmas arising from supporting a relative with MS and how they can be resolved, at least in part. It will examine the impact of severe MS on a range of different families and try to identify the factors which mean that some adapt and cope more successfully than others.
The research will be looking for answers to the following questions:
- What are the psychosocial and relationship needs of MS patients in nursing care facilities, as perceived by relatives, and are they being met?
- What are the psychosocial and relationship needs of relatives of MS patients in nursing care facilities, and are they being met?
- What family processes are involved in adapting to a relative's advanced stage MS?
The aim is to produce a model of successful coping strategies that can help to shape future support for people with MS and their families.
CUPID update
Peninsula Medical School, Plymouth
CUPID (Cannabinoid Use in Progressive Inflammatory brain Disease) is a three year clinical trial evaluating whether tetrahydrocannabinol (THC), one of the many chemical compounds found in the cannabis plant, might slow the development of disability in MS. Previous studies have suggested that THC could have a protective effect on nerves. The trial began in 2006 and has so far recruited more than 400 people with secondary or primary progressive MS from across the UK. Participants take either THC or placebo (dummy drug) twice daily for three years and attend study clinics 11-12 times over this period.
The MS Trust is funding the cost of MRI scans for this study.
Reproducibility of a fatigue management programme
University Hospital, Birmingham
Fatigue is one of the commonest symptoms of MS and can often have a major impact on people's lives. Managing and treating fatigue in MS is a challenge. There is growing evidence that fatigue management programmes can improve a person's perception of their level of fatigue as well as their quality of life.
This three year project builds on a previous pilot study at University Hospital, Birmingham. The pilot study found that a fatigue management programme produced small but positive benefits in the day to day living of the participants. As a result of the pilot study, a working manual for running the fatigue management programme was produced.
This study aims to test whether the initial results obtained in Birmingham can be duplicated in a further eight centres throughout the UK using the same programme.
