In recent years there’s been huge progress in our knowledge and treatment of MS. But despite these advances there’s still much we do not understand. What causes MS? Who’s at risk? Can MS be prevented? These are just some of the fundamental questions that still need answering.
MS prevention has long been a high priority for people affected by MS. It ranks second in the research priority list, developed with the James Lind Alliance in 2013.
Within the scientific study of MS there are several avenues that can help us make progress towards preventing the condition. These avenues include the role of EBV (Epstein Barr Virus), genetic and environmental factors, behaviour changes and studying people ‘at risk’ of MS to gain greater understanding of early disease development.
However, despite these areas of high potential, MS prevention research remains underfunded. A recent international analysis of MS research funders has identified that only 6% of all current investment is allocated to this type of research. In addition, there's a global lack of research experts and strategic direction across this field.
How we plan on changing this
For these reasons we’re establishing the UK MS Prevention Taskforce with the purpose of publishing an action plan. It will be aimed at researchers and funders to make headway around MS prevention and risk reduction. We’re inviting people affected by MS, MS researchers and clinicians, as well as experts from other related health and research fields, to contribute.
How do we get started?
The first step is to hold a kick off workshop in December with a large group of diverse people who have varying experiences and expertise.
The workshop will be taking place in London on Wednesday 13 December, 10am-4pm (travel costs can be covered).
The workshop will cover discussion of who may be most likely to develop MS, what is happening at the very early stages of MS onset and what prevention interventions could look like. The conversation will be run through a series of interactive activities and sessions.
After the workshop, a smaller Prevention Taskforce Team will then be established from the workshop group. The Taskforce Team will be based on people’s experience of contributing to group conversations and on people’s passion for the subject. The Prevention Taskforce will work together over the next year to finalise the action plan. This work will be through a series of online meetings and two half day events over the year.
How can you help?
Our success will depend on ensuring a diverse range of perspectives and experiences are represented.
In particular we’re looking to include people considered to be at risk of MS. This includes siblings and children of people living with MS who are under 30 years old, and have not yet been diagnosed themselves.
We’re also keen to involve people who are recently diagnosed and who have a family history of MS.
If you know someone who fits the bill and would be interested in joining the discussion please contact the Research Team at [email protected]