Research

Exploring the experiences of anxiety in people with MS (PwMS) - study findings so far.

Anxiety can be loosely defined as ‘worry about unpredictable future events.’ Given the unpredictability of MS, it stands to reason that anxiety in people with MS (PwMS) can be a common experience. For example, we know that roughly 25% of PwMS experience “clinically significant” anxiety, which can have a number of negative impacts on people’s daily lives.

The proportion of PwMS experiencing anxiety may have increased further during the Covid-19 pandemic, however less is known about the factors that may help ease the experience of anxiety in MS.

Online provides opportunity to expand physiotherapy for people with MS and other conditions.

The lives of thousands of people living with neurological conditions can be significantly improved through the development of a new ‘online’ national physiotherapy service to promote their well-being and prevent disability.

MS Ireland (Multiple Sclerosis) is seeking to engage with the Minister for Health Stephen Donnelly and HSE to capitalise on opportunities which proved highly effective during COVID-19.

The Epstein-Barr virus (EBV) is one of the most common human viruses and is found all over the world. Most people get infected with EBV at some point in their lives. Even though it causes an illness called infectious mononucleosis/glandular fever, which impacts millions of adolescents globally, no vaccine is currently available (1).

Background to project

MS Ireland provides a range of services for people living with multiple sclerosis (MS) and their families. One important aspect of these services is the support provided by a series of regional community workers who are available to meet with and/or offer advice to people with MS (PwMS) on a one-to-one basis. This support is often termed “casework”.

Because the nature of supports offered by community workers varies so greatly, it can be a challenge to evaluate the effectiveness of casework. In other words, it can be difficult to establish if and how community workers effectively meet the needs of PwMS.

In our project, conduced by a research team in the Department of Psychology at Maynooth University and supported by a grant from the Irish Research Council, we wished to explore this issue. Specifically, we wanted to explore ways in which casework at MS Ireland may be better evaluated.

Last week, a paper titled ‘Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis’ by researchers in Harvard University investigating the role of the Epstein-Barr Virus (EBV) in MS was published. The findings of this study provide a significant step forward in understanding MS and creates opportunities for new research into how this virus can sometimes lead to auto-Immune diseases, such as MS.

New paper from the International Progressive MS Alliance - Charting a globlal research strategy for progressive MS – An International Progressive MS Alliance proposal.

Recently, the Multiple Sclerosis Journal published a paper by the International Progressive MS Alliance. The paper, “Charting a globlal research strategy for progressive MS – An International Progressive MS Alliance proposal’ is a strategy to find better ways to care for people with progressive forms of multiple sclerosis (MS).

MS Ireland was delighted to see MS well represented at the Future Neuro Patient Public Involvement (PPI) event last week.  

MS Ireland were delighted to launch MS Explored - The Podcast back in September. As we begin planning for Season 2 we are keen to hear from our listeners and use this feedback to help inform our plans for future episodes. We are inviting our listeners to provide their feedback in a short 3 minute survey. The survey can be found here: 

https://www.surveymonkey.com/r/WPQ3PHZ

An anonymous survey is being co-ordinated by Prof Ronan Killeen, Consultant Radiologist, St Vincent's University Hospital and Dr Brendan Kelly, PhD candidate UCD and Radiology SpR and designed with input from MS Ireland. 

MS Ireland launches dedicated resource ‘Understanding MS@Work’ for people living with MS and their employers to become more informed on the daily impact of MS. 9 out of 10 people with MS say the pandemic has helped steer conversations with their employers about the benefits of working from home long-term.

• New research among MS Ireland members reveals impact of COVID-19 on employment, and how working life with MS can be better understood by employers
• 80% of people with MS say the way they work has changed as a result of the pandemic
• Although 85% say their employer knows they are living with MS, more than one-fifth (21%) of respondents cited ‘lack of understanding / empathy’ as the issue that most impacts their working life