There have recently been encouraging developments in understanding and treating progressive MS. In this issue of Open Door we report on MS Trust research into the experience of transition between relapsing and secondary progressive MS and hear from Dr Jeremy Chataway on his research into the effects of three drugs on people with secondary progressive MS. To introduce the feature, Professor Alan Thompson, who is co-chair of team that coordinates the International Progressive MS Alliance’s research programme, explains how the focus has changed
Why have we seen comparatively little research into progressive MS until recently?
The advances in the treatment of relapsing MS have been quite extraordinary. This is because we have drugs that suppress or modulate inflammation. What is much more difficult is how we stop neurodegeneration – that is, the destruction of nerve cells. The approaches you might take are several. One might be to attempt repair the damaged protein around the nerve cells – that is, stimulate remyelination. Another might be to protect the nerve axons so they don’t get damaged. But it’s a much more complicated scenario, which is the main reason why we have seen so much progress in relapsing MS but relatively little in progressive MS. I should also say though that the focus of research activity and the pharmaceutical industry has been very much on relapsing MS over the last 20 years. It’s now important to change the focus, or at least move it so that it now includes progressive forms of MS.
What do we need to do to find disease modifying treatments for progressive MS?
We need to think about trial design: can we think about new and different ways of designing trials that don’t take a very long time to reach conclusions? Can we identify new clinical outcomes and can we include new biomarkers that give us some insight into the underlying neurodegeneration? For me most important, if we are to develop new treatments, is to get a better understanding of the mechanism underlying neurodegeneration. It’s only by understanding the underlying mechanisms that we can identify new targets for treatment. And it’s only by identifying new targets that we can find new ways of stopping progression. An understanding of the underlying mechanism is critical.
How is the International Progressive MS Alliance working to change things?
The International Progressive MS Alliance was set up with a very clear goal: to deliver treatments for progressive MS and to improve symptomatic management and rehabilitation. It’s a very simple goal, but a very challenging one. We all felt that it is essential to raise the profile of progressive MS. It is important to coordinate research activities worldwide and to bring together the key international figures in the field so that they will work together. So what we need is to identify the blocks to treatment and lay out a research programme that will address those blocks over time. For example, one of the blocks is identifying targets for treatment. Another is to develop new clinical trial design and to identify new outcome measures that can be used within those trials – both biomarkers and clinical measures. Another is to move those trials on into bigger, more definitive studies. And finally to address and advance the areas of rehabilitation and symptomatic management.
We’ve had an overwhelming response from the international MS community, which is now working together in a way that it had never done before. We have a single scientific advisory committee and a single international review committee. We’ve set up several research calls. Our first call was for small grants that stimulate interest and engagement, and that’s been a huge success – involving over 20 countries. Now we’re moving onto a much bigger research call which is looking at major collaborative networks.These will attract worldwide collaborations, which we anticipate will result in transformative research that will make a huge difference to people with progressive MS.
Microaggressions at work; more than just hurt feelings
09 May 2019
In what they believe to be the first study of its kind, US researchers investigated the impact of microaggressions (subtle discriminatory actions) experienced by people with MS at work.
Do disease modifying drugs affect life expectancy?
16 April 2019
This study looked at whether taking one of the beta interferon disease modifying drugs extended life expectancy.
How do families affected by MS manage health information?
20 March 2019
This research explores how couples and families affected by MS seek, share and withhold health information.
MS in the Media
17 May 2019
- Statin has potential as SPMS drug
- EastEnders MS storyline
My Vespa adventure for the MS Trust
13 May 2019
For his next fundraising adventure, our supporter Nick Jolly will be riding 2,500 miles to Hungary on his Vespa scooter. He tells us about the inspiration behind his challenge.
"When you lose something, it makes you appreciate what you have"
13 May 2019
Danielle MacGillivray stars in our new film, Danielle. Here she tells us about her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.