A recent conference organised by the charity MS Trust featuring experts in the sector, focused attention on aspects of the disease which are rarely in the public eye and still not researched enough.
One of the things the conference brought to attention was how hormones affect the disease process. Only 10 papers have been written about menopause and MS, although two thirds of the people in the UK who have MS are women.
Sara McGowan worked as a physiotherapist for 32 years and is now working for the Samson Centre in Guildford, a charity which offers support and activities to people with MS and was present at the conference.
She said: “I feel heartened that it is being recognised and we need to do more research on women’s specific issues.”
Bladder and bowel management was one of the main topics of discussion as these are key symptoms for 80% of people with MS.
“We often talk about the unseen symptoms […] you will see maybe someone struggling to walk but the symptoms such as bladder and bowel incontinence and severe constipation can be really debilitating,” said McGowan, noting that they are especially hard to manage in public situations.
She reported pain and fatigue being two other main symptoms which are unseen yet very common in people with MS.
During the conference attention also turned to people in their middle and late phases of Multiple Sclerosis. A lot of drugs available now are to reduce inflammation at the early stages.
The MS Trust wants to find drugs and treatments for those who have lived with MS for years to rebuild their nervous system.
One of the main causes of the disease’s progression is the degeneration of the nerves which come from the brain, down to the spinal cord and to the arm, making people lose the insulation around the nerve. According to McGowan and the MS Trust, rebuilding this insulation is one of the key priorities now.
One of the areas of research looking at this is the ongoing Octopus trial. The trial has recently been launched in more sites including Belfast Health and Social Care Trust and University Hospitals Coventry and Warwickshire NHS Trust.
Funded by the MS Society, it aims to transform the way Multiple Sclerosis treatments are tested.
McGowan said: “The goal of the trial is to see if any of the sort of accessible mainstream drugs which are already being used for other health conditions would be suitable for MS.”This type of research approach was also used during the COVID-19 pandemic.
Research started at University College London in 2023 with the objective of expanding to 30 sites around the UK.
Effectively it tests drugs which have already been proven to be safe and have shown potential for protecting nerves.
They test eight drugs at a time, if successful they keep using a drug and if not, they get rid of it.
“It is a really positive thing for someone to get involved in, because often people who have been diagnosed with MS for 20-22 years don’t meet the criteria for new drugs,” said McGowan.
She mentioned that two people who regularly go to the Samson Centre are taking part in the trail and have reported feeling positive about it. This trial might not directly help them but will help people in the future.
Another big debate at the conference was on when to start treating people with MS. Firstly, the diagnosis needs to be certain, which is now easier but might still take some time.
There are a number of drugs available which slow down the progression of the disease and can for example give people 10-15 years more in the ability to walk.
The drugs can stop people from having severe relapses and hospital admissions.
The debate highlighted the importance of encouraging patients to take these drugs as soon as they are diagnosed.
“Often when people are diagnosed, they are young and very able and feel like they can manage it without drugs,” said McGowan.
Researchers do know, though, that taking them earlier can result in better outcomes.
One issue with diagnosing MS is that often people affected by it do not seek immediate help.
They can trace their symptoms back sometimes 20 years before getting diagnosed, because the early-stage symptoms are very diffuse and can be transitory which leads them to not worry too much.
MS is a “multifaceted” disease and impacts every aspect of life, from physical to social, so meeting other people affected by it is a powerful tool for some.
Centres like the Samson, which supports 243 people, can be of great support both physically, through gym sessions and classes, but also mentally by promoting a healthy lifestyle, teaching people how to recognise symptoms and when to seek help.
You can find out more about the Samson Centre on their official website.
