MS Ireland
Informing, Supporting and Caring for the MS Community
MS Ireland helps researchers with their projects by offering advice, data and access to our MS community. We encourage people with MS to get involved in research that is ethical, appropriately organised by a recognised institution and sanctioned by that research authority.
The projects listed here are for information purposes only. If you choose to get involved in any project you do so at your own discretion. Please read the information provided carefully and make contact with the individual researchers if you have questions
Check out our health professionals section for news and more information.
If you would like help with your research, contact Aoife Kirwan on aoifek@ms-society.ie or call (01) 6781600.
Watch talks from Professor Gavin Giovanonni; Dr. Jens Bansi; Dr. Kate O Brien, Genomics Medicine Ireland; Dr. Sabina Brennan.
A brief overview of the fascinating history of Multiple Sclerosis, from the first known case dating back to the 14th century
Research shows online supports vital as majority of carers feel isolated in their role Ireland’s 360,000 family carers are being celebrated this week as National Carers Week takes place across the country with scores of events being organised specifically for those who care for their loved ones. However, research being published today (Monday) as part of this 13th National Carers Week, indicates that many family carers continue to be unable to leave their own home and depend heavily on online supports for information, support and social connection. Care Alliance Ireland, in partnership with the eleven other National Carers Week partner groups recently undertook a survey of 300 family carers across Ireland. The full report is available here Over half (59%) of respondents said they felt lonely or isolated either ‘often’ or ‘always’, with a further 37% saying they ‘sometimes’ felt that way. Only 3% of respondents said they could ‘always’ make it to social and support events that they would like to get to – with almost a quarter (23%) saying they can ‘never’ get to those kinds of events. Over half the respondents are members of online support groups and 76% have looked up information regarding the health of their loved one online. Speaking about the research, Zoe Hughes, Policy & Research Officer with Care Alliance Ireland said; “It’s clear that the lack of on-the-ground supports like respite and home care is having a huge impact on family carers being able to take a break and seek supports – meaning that online supports are increasingly become vital for many of those who are isolated and lonely in their role”. Following from the results of the research, Care Alliance Ireland are hosting an online coffee morning for those family carers who are unable to make it to the many events happening across the country from 10-16th June. Carers who would like to take part should check the National Carers Week Facebook Page for details.
NEW Research shows that 44% of Irish people have poor understanding of the symptoms and nature of Multiple Sclerosis (MS)[1] Research study commissioned by MS Ireland and Novartis Ireland to mark World MS Day 2019 explores the public’s awareness of the visible and invisible symptoms of MS 93% of people in Ireland claim to be aware of MS, more than 44% consider their understanding of the symptoms and details of the condition to be poor with nearly one third of respondents unable to list any symptoms related to MS.1 This new research conducted in April 2019 by IPSOS/MRBI, was revealed to mark World MS Day on 30th May 2019 by MS Ireland and Novartis who join with MS organisations around the world as part of the ‘My Invisible MS’ (#MyInvisibleMS) campaign exploring public awareness around the invisible symptoms of MS and the impact it can have on day to day life. Although more than a third of the population (37%) claim to have a family member, friend, or loved one living with MS, and 66% of people in Ireland believe they have a good understanding of MS, there are still some key aspects of the condition that remain unclear.1 When asked if MS was more prevalent amongst men or women, almost half (45%) of participants responded that MS affects men and women equally. In fact, MS is at least two to three times more common in women than in men.[2] Nine thousand people and their family members live with Multiple Sclerosis across Ireland. Although MS is a progressive neurological condition that can affect a person’s health, lifestyle and relationships, many people with MS find ways to manage and cope with many of the effects and difficulties. Symptoms vary from person to person and each person is affected by the condition differently. Some of the symptoms of MS are immediately obvious. Reduced mobility is often the most visually apparent. Other symptoms such as fatigue, changes in sensation, memory and concentration problems are often ‘invisible’ symptoms and can be difficult to explain to others. Ava Battles, Chief Executive of MS Ireland said, “While many people are aware of MS and the more visible, tangible symptoms that it can cause, the effects of MS can vary greatly from person to person and can often be invisible to those around them. Through this research and our World MS Day activity we hope to raise awareness around the less visible aspects of MS and how it can impact on the day to day life of a person living with the condition.” Loretto Callaghan, General Manager and Country President, Novartis Ireland commented, “We are delighted to support MS Ireland on World MS Day and to bring the results of this research study to the general public. It is so important that the community of people living with MS in Ireland feel that their condition is properly understood by their peers and this is something that can only happen by spreading awareness through initiatives such as World MS Day.” Levels of awareness around the more visible symptoms of MS among the public are relatively high with almost 20% of those surveyed listing muscle degeneration, and 17% naming loss of mobility.1 Only 8% of people identified fatigue as a key symptom despite almost 90% of people living with MS reporting fatigue as a consequence of their condition.1,[3] Commenting on the launch of the research findings, Professor Orla Hardiman, Consultant Neurologist at Beaumont Hospital, Professor of Neurology and Head of the Academic Unit of Neurology in Trinity College Dublin and the HSE National Clinical Lead for Neurology said, “The research findings highlight how prevalent MS is in our society today with nearly 40% of the population being impacted either directly or indirectly by the condition. It’s important that as a community we educate ourselves on the symptoms that affect the day to day lives of people living with MS, especially those that are not immediately apparent and less visible.” Sharon Henvey, World MS Day spokesperson said, “As someone living with Multiple Sclerosis for the past 10 years, World MS Day is a day that means so much to me and my family. It’s a day that shines a spotlight on the 9,000 people in Ireland living with MS and what life is like for us. The theme for this year’s campaign is visibility which I think is crucially important, as some of the symptoms I experience are unseen. I do at times feel that my MS is invisible which can be hard to explain to friends and family, so hopefully, the campaign can create awareness of these unseen symptoms” Research commissioned by MS Ireland and Novartis and completed by IPSOS/MRBI, April 2019. [1] Research commissioned by MS Ireland and Novartis and completed by IPSOS/MRBI, April 2019. [2] MS Ireland website Available here [3] Societal Cost of Multiple Sclerosis in Ireland 2015 [online]. Available here
NUI Galway are recruiting Applications are invited from suitably qualified candidates for a part-time, fixed term position (20% FTE) as a Patient Representative Research Assistant with the Discipline of Occupational Therapy at the National University of Ireland, Galway. This position is funded by Health Research Board and is available from July 1st 2019. This is a specific purpose contract circa 30 months. Information on project: The post is an exciting opportunity to be part of a research study of a cognitive rehabilitation intervention for people living with multiple sclerosis. Some people with multiple sclerosis have cognitive symptoms (e.g. difficulty with memory, processing information, attention) that impact their daily lives. The lead researcher has developed a new occupational therapy programme for people with multiple sclerosis that aims to help people deal with these symptoms. The programme will be assessed in this study. How to apply: Applications to include a covering letter, CV, and the contact details of two referees should be sent, via e-mail (in word or PDF only) to Dr Sinéad Hynes at sinead.hynes@nuigalway.ie Please put reference number NUIG-079-19 in subject line of e-mail application.Or by post to Dr Sinéad Hynes, Lecturer in Occupational Therapy, School of Health Sciences, Áras Moyola, NUI Galway. Closing date for receipt of applications: Friday 31st May 2019 at 5.00 pm Interviews are planned to be held on 11th June 2019 All positions are recruited in line with Open, Transparent, Merit (OTM) and Competency based recruitment. National University of Ireland, Galway is an equal opportunities employer.
Living with a neurological condition in Ireland The Neurological Alliance of Ireland have launched their latest research on 'Living with neurological condition in Ireland'. The findings from their survey, based on responses from over 600 individuals with neurological conditions and family carers, highlight a “cascade of challenges” from long waiting times to get a diagnosis, struggling to access ongoing care and dealing with the impact of their condition on work, financial wellbeing and family relationships. Download the full survey report from NAI's website
Research Request What is Parental self-efficacy? Parental self-efficacy describes the beliefs one has of their ability to manage and perform the role of parenting successfully. Who is carrying out this study? Rachel Mc Laughlin is a 4th-year Occupational Therapy student in NUI Galway. This research is being completed with a final year university project. This study will run between January and April, 2019. Aim of study Your participation in this study will add to knowledge on how MS can affect parents, specifically through levels of fatigue and parental self-efficacy. It is hoped that this information will lead to an improvement in health services in the future. Who can participate A parent with MS with a child/children between 2-18 years old? If you are interested in participating in a study looking at the impact of fatigue on parenting please read the information sheet to find out more about this study and if you are eligible to participate Get in touch Contact the researcher at r.mclaughlin5@nuigalway.ie who will happily answer any questions that you may have.
Calling all budding photographers! Enter our competition to see YOUR photo in our new calendar!
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19 June 2019: Physiotherapist led Exercise classes for people with MS, starts 9th January (ongoing)
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