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The Neurological Alliance of Ireland is the umbrella organisation for neurology patient organisations in Ireland. MS Ireland as members of this organisation have been supporting the Patients Deserve Better Campaign which aims to highlight the lack of neurology nurses across the country. Ireland requires further 100 neurology nurses in order to address unacceptable waiting periods, delays with diagnosis and treatment. Neurology nurses, including MS nurses play a crucial role in the care of people living with neurological conditions.

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.

The NAI is launching a national campaign, ‘Patients Deserve Better’, calling for investment in nurse specialists across neurology services.

We are currently recruiting for Move Smart MS Move Smart MS offers specialised, online, exercise programmes for people with MS. We have learned that by moving our physiotherapy and exercise programmes online, the barriers of transport, travel time and accessibility are removed.

Our feedback has been overwhelmingly positive. By recruiting nationally, rather than locally, we can bring together groups of people at a similar stage of their MS journey and deliver symptom specific programmes. Move Smart MS is funded by the Innovate Together Fund from Rethink Ireland. You can learn more about the programme and how to register here.

Pamela O'Donnell took part in the programme last year and describes her experience below.

Temperature sensitivity is something that many people living with MS experience. Some people find that higher temperatures can cause a temporary worsening of their symptoms while others find that cold temperatures temporarily exasperate their symptoms. Other people are impacted by both heat and cold.

Lockdown and Covid have changed me forever.

For the past 10 years or so I have been keeping a similar routine. I'd get up in the morning, have a cup of tea, breakfast and get on with my day. My schedule would be all about spending time with people. It would be getting children ready for school or creche, chats with the coffee guy at my station, watching the bleary-eyed strangers on the train or the lovely woman who always graced the pavement past me on the street when I walked to work.  There’d then be the banter with work colleagues as we got on with the tasks at hand.

There are the parts of Christmas I love, like time with family, winter walks, twinkling lights and evenings by a cosy fire. But the parts I like don’t always gel well with my MS. As a result, Christmas can turn into something of a marathon for me and excitement tends to quickly give way to dread when I realise there is no way my body will cope with all the festivities.

There are the parts of Christmas I love, like time with family, winter walks, twinkling lights and evenings by a cosy fire. But the parts I like don’t always gel well with my MS. As a result, Christmas can turn into something of a marathon for me and excitement tends to quickly give way to dread when I realise there is no way my body will cope with all the festivities.

Earlier this year, MS Ireland hosted a webinar on fatigue management with Dr Michelle Murphy. Below is a summary of the information provided in the webinar.

The symptoms of Multiple Sclerosis can vary greatly from one person living with the condition to another. Fatigue is a very common symptom of MS, impacting between 75-90% of people living with MS, on some level. Fatigue can create feelings of exhaustion, tiredness, weariness or lack of energy. It is different to the fatigue experienced by those who do not live with MS. MS related fatigue can be very difficult to diagnose, understand and communicate. But what exactly causes fatigue? What effective techniques or strategies can be used to manage fatigue?