Mental health care for MS: focusing on the person, not just the symptoms

We know that psychological therapies may help with MS symptoms such as fatigue, sleep, depression and anxiety. 

But we also know that the relationship between depression, anxiety and MS is so complex that we can’t reduce it to one questionnaire or expect it to be improved with one intervention. So we need to find ways to develop tailored psychological therapies for people with MS.

Developing MyMS-Ally

We started our research by speaking to people living with MS to understand what they found helpful or unhelpful in psychological support. They told us that they wanted psychological therapies that allowed them to redefinine their identity, adjust to their new body and work through feelings of guilt and shame.

Based on those findings, as well as findings from other research, we developed our psychological intervention, which we called MyMS-Ally. It’s an eight-session online group intervention, where people with MS meet to talk about their experience and management of their MS. 

To understand whether it could be an effective therapy for people with MS, we ran a pilot project facilitated by a therapist. Five people with MS joined the group and shared their experiences of MS before and after they took part in the intervention. They completed questionnaires and we held online interviews to understand their unique perspectives on the therapy. 

Fostering connection 

From this pilot study, we found that supportive and nurturing groups like this can spark real change. The connections that participants made with each other were even more helpful than psychological techniques. And they felt empowered and reassured after the group discussions. Open and genuine communication with other people with MS supported their growth and relationship-building. And seeing their shared similarities helped them connect with one another. 

We also found that giving people an opportunity to restructure their MS stories was powerful. Through sharing their own experiences, and relating to other people’s experiences, participants developed a more compassionate attitude towards their MS. 

What’s next?

This research has given us a better understanding of what people with MS want from psychological therapies. And how we can incorporate this into our MyMS-Ally programme. In our future research, we want to explore further ways to tailor psychological therapies to the needs and preferences of people with MS, to make them more impactful and accessible. 

Eva has created some slides to share her research with people with MS, which you can view here. And you can read more about this research in her journal article.