Research

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

‘The Societal Cost of Multiple Sclerosis in Ireland’ was initially conducted in 2015. As much has changed in recent years, we are looking to gain an insight into the current ‘Societal Cost of MS in Ireland’ to identify and compare any differences in your lives. Please complete the survey at the following link it should take 20 minutes.

The National Transport Authority (NTA) is conducting research with the aim of gaining a better understanding of the accessibility requirements and experience of users of small public service vehicle (SPSV), for example taxis and hackneys.

Love Home Swap is currently looking for participants to help them in a research project that will open the doors to better holiday options for people with accessibility needs.