What is MS?
More than 130,000 people in the UK have multiple sclerosis (MS), a devastating neurological condition which attacks the nervous system. With 7,000 new diagnoses a year, it is the most common neurological condition in young adults. In MS, a person’s immune system, which normally helps to fight off infections, mistakes myelin for a foreign body and attacks it. This damages the myelin and strips it off the nerve fibres. This damage disrupts messages travelling along nerve fibres – they can slow down, become distorted, or not get through at all, causing symptoms.
Symptoms usually start in early adulthood and diagnosis is often frightening and uncertain. Symptoms can be different for everyone but can affect mobility, vision, cognition, pain control, bladder and bowel function. Once diagnosed, MS stays with you for life and as the condition becomes progressive it results in cumulative and irreversible disability. At its worst MS, progresses rapidly and strips away independence which often results in economic and social isolation. Unsurprisingly, up to 80% of people are forced to give up work within ten years of diagnosis, impacting on their financial situation.
About the MS Society
We are the leading UK charity supporting everyone affected by MS. With over 29,000 members and 260 volunteer-led support groups, we are a trusted hub in a community of patients, carers, families, health professionals, researchers and policymakers. Our vision is a world free from the effects of MS and our mission is to enable everyone affected by MS to live life to their full potential and secure the care and support they need, until we ultimately find a cure. We are largest not-for-profit funder of MS research in Europe and due to this extensive research programme, hope to be in the final stages of testing treatments for everyone with MS by 2025
Hope for the future - the Stop MS Appeal
In the last decade MS research has accelerated at pace, giving hope to those affected. Twenty years ago there were very limited treatment options, but now there are over a dozen licensed treatments that can reduce the severity and frequency of MS relapses and undoubtedly, the MS Society has been at the forefront of many of these breakthroughs. However, although we have made significant progress, there are very few licensed treatment for progressive MS. It is only with increased strategic investment that researchers will be able to continue to build on our previous successes and develop treatments that not only radically improve symptoms and slow progression, but bring progression to a halt.
Launched in 2015, the Stop MS Appeal aims to raise over £100 million and invest in a 10 year programme of research to create an unprecedented combination of therapies. We have seen the Appeal go from strength to strength with over £54m secured in the last five years. We are now at a crucial period in the Appeal’s lifetime; every penny raised moves us ever closer to achieving our collective aim: finding effective treatments for all forms of MS.
OCTOPUS: A clinical trials platform for progressive MS
We are delighted to have launched our new, exciting and innovative clinical trials platform, known as OCTOPUS. Instead of stopping and starting separate trials, we'll have an efficient and cost-saving rolling programme. OCTOPUS will act as a ‘mega-trial’, testing many different treatments at the same time. We'll be able to quickly add new treatments as they're discovered and stop testing drugs that aren’t working. This means our search for effective treatments will be greatly accelerated, opening up the genuine possibility we will be in the final stages of testing treatments for everyone with MS by 2025.
OCTOPUS will be led by Professors Jeremy Chataway and Max Parmar from University College London (UCL). UCLH will act as the lead site, but the trials will be run at around 30 trial sites all over the UK with regional recruitment hubs helping to coordinate local recruitment. We are hoping to confirm the first group of sites in the summer. This approach never been done before in MS research but the MS Society is uniquely well-placed to deliver this ambitious project; we have not only shown that we can run larger, more efficient trials, but also have connections with tens of thousands of members of the MS community in the UK. In addition, clinical trials in the UK are some of the fastest and most cost effective anywhere in the world, not least because of the NHS. Clinical trials platforms like this have already proved successful in cancer research. Professor Max Parmar, Director of the MRC Clinical Trials Unit at UCL, pioneered STAMPEDE that discovered new treatments for people with advanced prostate cancer. He now hopes to use his expertise to find treatments for everyone living with MS.
The UK MS Register COVID-19 Study
The UK MS Register launched in 2011 and so far, we've invested over £3million in revolutionising our understanding of the condition. With over 17,000 people with MS across the UK signed up, the Register captures real world data about living with MS. This data enables the development of new health services that better meet the needs of people with the condition. In response to COVID-19, the Register launched a new survey to monitor how those with MS in the UK are dealing with the pandemic. The study asked people who were already part of the UK MS Register to update their information and complete a short questionnaire on their current clinical status. Follow-up surveys were sent every two weeks initially to determine how their symptoms were evolving. This is to be repeated monthly over 12 months. This study is helping us understand the impact of the COVID-19 outbreak on people with MS. Specifically:
- Whether disease modifying therapies (DMTs) affect the risk of COVID-19 infection and/or the severity of the illness.
- Whether there is a long-term impact of COVID-19 on MS including disability and relapses.
- How much are they self-isolating and how effective that is, as well as the effect of self-isolation on mood, fatigue and other measures.
- Where they are getting their health information during the outbreak.