MS Ireland
Informing, Supporting and Caring for the MS Community
Continual delays in reimbursement of new medications One year ago, the Irish Pharmaceutical Healthcare Association (IPHA) made a Framework Agreement with the Irish government on the pricing and supply of medicines. The agreement had two purposes (1) to save money and (2) to have timely acce...
Published by MS Ireland on Thursday July 20 2017 12:14 PM
Book your place now MS Ireland will host the annual MS National Conference on Saturday, 23rd September in the Radisson Blu Hotel, Sligo. The theme of this year’s conference is 'Quality of Life' Highlights of the day include: Dr. Orla Gray, Neurologist, Queens Hospital, Be...
Published by MS Ireland on Wednesday July 19 2017 09:45 AM
Identifying the values that will guide MS Ireland in turning our mission and vision into a reality MS Ireland Mission 'To enable and empower people affected by Multiple Sclerosis to live the life of their choice to their fullest potential' MS Ireland Values An organisation's stated values des...
Published by MS Ireland on Monday July 10 2017 09:56 AM
Resigning as a Member of MS Ireland Dear Members, Following a recent ring around to members regarding accessing the financial statements on the website, some members said that they wished to be removed from Membership. Should you wish to resign as a member of MS Ireland, please write to...
Published by MS Ireland on Thursday June 29 2017 11:01 AM
Cladribine Tablets receives positive CHMP opinion for treatment of relapsing forms of MS Efficacy and safety data support positive benefit/risk assessment from CHMP Cladribine Tablets is the first and only investigational medicinal product to have shown a sustained 4 years of di...
Published by MS Ireland on Monday June 26 2017 10:45 AM
Hello, my name is Caroline Brennan and I was diagnosed with MS in May 2014. I experienced prolonged symptoms both before and after my diagnosis and got no relief from disease modifying drugs- just a selection of side-effects. As crazy as this may sound, I now count my diagnosis as one of the gre...
Published by Caroline Brennan on Wednesday June 21 2017 12:12 PM
Quality of life for people with Multiple Sclerosis (MS) reported as being one third lower than the general population[i] To mark World MS Day on 31st May, 2017, MS Ireland and Novartis have released research on the quality of life of people living with Multiple Sclerosis (MS) in Ireland. The res...
Published by MS Ireland on Wednesday May 31 2017 12:10 PM
New treatment option available to help Irish Patients in fight against Multiple Sclerosis (MS) Daclizumab has a ‘double-action’ approach – offering a new once-monthly treatment option for people living with MS in Ireland. A new once-monthly treatment for relapsing multiple scl...
Published by Biogen on Monday April 03 2017 12:24 PM
First treatment licensed for primary progressive MS in the US Ocrelizumab has been approved as a treatment for both relapsing and primary progressive MS in the US. It is the first licensed treatment for people with primary progressive MS. The decision was made by the US Food and Drug Administrat...
Published by MS Ireland on Thursday March 30 2017 03:09 PM
Save the date MS Ireland will host the annual MS National Conference on Saturday, 23rd September in the Radisson Blu Hotel, Sligo Stay tuned for updates...
Published by MS Ireland on Tuesday March 07 2017 09:41 AM
This week from the MS & Me archives series Aoife Kirwan looks at life before her MS diagnosis. Before MS I really took my health for granted. I rarely went to the doctor. I was afraid of needles. I didn't think about what I ate or what time I ate it. I took little things for granted like ticking 'no' when asked if I had any known medical conditions. I guess I never really had to consider these things before and each first that came along really got to me. When shopping for car insurance after my diagnosis I wasn't able to get many quotes online because I had to tick 'yes' to the medical condition. There are more obstacles in the way... extra paperwork! Before MS I thought I had all the time in the world to achieve life goals. Now I have to plan, I have to think ahead, I have to achieve goals in a shorter space of time. Life is harder, and I am harder on myself because of it. Before it became apparent in me, I didn't think young people could 'get' it. I never thought that I would have all this on top of 'normal' life. Before MS I didn't see the injustice of our health system. I didn't know that people had to fight for treatments. I didn't know that your postal address determined what you were entitled to. I had no idea that life was made harder for those who it was already hard for. Before MS I never questioned the opinion of a doctor, I trusted in them completely. I never thought that my opinion would factor into a medical decision. I never knew I would have the confidence in myself to make decisions that affect my health. Before MS I couldn't pronounce the word encephalomyelitis. I had never set foot inside a research lab but since my diagnosis I have travelled to the International Multiple Sclerosis Research Centre in New York, twice! Before MS I never knew I would have such an interest in research and information and even more, sharing that. Before MS I did not know that the MS community was made up of very smart, wonderful and strong people. Before MS I probably would have considered MS a weakness but now I know that having MS and carrying on with life as normal requires more strength than most people have. We don't always realize how strong we are until being strong is the only choice there is.
Dublin Neurological Institute are running a free course for carers of people with neurological conditions in September. This course is designed to help carers feel less isolated and helpless. Topics to be covered will include dealing and managing changes in your life, medication management, services in the community, information on entitlements, the Assisted Decision Making Capacity Act and the emotional impact of coping with a neurological disease. The education programme commences on 6th September at 6.30pm in the Nurse Education Centre, Nelson Street, Dublin 7 and there will be four sessions in total. The other sessions will be on 13th, 20th and 27th September. The course is free but pre-booking is essential. To book or make enquiries, please call Regina Prenderville on 01 854 5172.Leave message on voicemail and your call will be returned.Alternatively you can email pha@mater.ie. Further information is available in this leaflet. Please note this programme is not being run by MS Ireland. Any enquiries should be directed to the organisers.
This week from the MS & Me archives series Willeke Van Eeckhoutte discusses people waiting, wondering, dreading, hoping from the Neurology waiting room. It is not fair. Nobody deserves to be here. Nobody is ever prepared to hear what the stranger in front of them has to say. A neurologist looks at your test results, gazing, thinking. Do they wonder how they will tell you that from this minute onwards, your life will be different, that you will have to change your lifestyle to suit your new, closest and most annoying illness, that your body had betrayed you? People with neurological illnesses walk in and out. Often their illness seem larger than what they perceive themselves to be. For the ones sitting, waiting by themselves, without someone accompanying them, time goes slow. For the ones waiting with their boyfriends, spouses, parents, time is gentler. They talk about fears, or they talk about anything but the reason why they’re there. For me, MS will always be a lonely illness because I am the first in my family who has it. It hampers, harms and sets boundaries where I want none. It shows me that people are vulnerable, open to inner destruction of a central nervous system gone wrong. For me, it is love, friendship, knowledge and joy. It made me who I am today, strong, with the will to live fully. I will not falter, go into self-destruct. I will not go where I am not supposed to go. Stood at my own six feet under in 2008 and I returned. It wasn’t time yet. Waiting room fills with familiar faces with MS… harmed but alive, dreaming and hoping. One day neurology waiting rooms will be empty, MS cured and eradicated. Lives back to the way they used to be. Love. Friendship. Healthy. It is not a dream. It will be reality Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me if you want to read more. Originally published May 2014 from the Neurology waiting room in Beaumont Hospital, Dublin
Expert Reference Group developing clinical guidelines for the access programme In February, the Health Products Regulatory Authority (HPRA) released a report which recommended the establishment of an access programme for medicinal cannabis products for certain named conditions including spasticity associated with MS. MS Ireland cautiously welcomed the HPRA report, whilst still expressing concern that the efficacy, safety and quality of non-pharmaceutical products cannot be guaranteed. MS Ireland nonetheless recognises that many people with MS will welcome the opportunity to be able to legally access such products through the access programme, when it is established. Since February, work has been ongoing to establish the programme. The Department of Health convened an Expert Reference Group, comprising of representation from the areas of Oncology, Palliative care, Anaesthesiology, General Practice, Adult Neurology, Paediatric Neurology, Multiple Sclerosis, Psychiatry, Pharmacy, Patients, Ethics, Health Technology Assessment and the Health Products Regulator. The Expert Reference Group have been working on draft clinical guidance for the cannabis access programme. MS Ireland were invited to provide feedback on these guidelines. A summary of our response is below. MS Ireland will keep all our stakeholders updated on any further developments regarding the access programme. Read the summary of our response here
This week from the MS & Me archives series - Helen Farrell looks at her smartphone use... I have a confession to make; quite often my smartphone gets more of my attention than my husband does, and it is a mutual situation with both of us tapping away in the evening as we read what has happened for friends on Facebook or the like. Years ago I was an avid fan of Star Trek: The Next Generation. In one episode the crew was taken over by a device that had a game so addictive, they were unable to break free of playing it obsessively (“The Game”). Only a young crew member and his friend were able to realise the evil hold the game had on them and free the crew of it. I am reminded of the episode when I find us tapping away on our smartphones, staring at the screens and ignoring each other and the television as we dual-screen to our hearts’ delight. How has this device such power over us? For information-addicts like me, it is a constant source of learning, entertainment, escapism and more. When I think back about what I did during periods of boredom in the past, I remember reading the back of cereal packets, propping up books as I ate, bringing books everywhere with me for a few minutes of escape. My smartphone obsession is probably no different than how I used to behave. However, I notice I am not as relaxed when reading material online. So much to keep up with! So little time! Books are a much more mindful experience and gentle on the eyes. I am now re-cultivating my paper-based reading and it truly does give a greater feeling of relaxation than browsing constantly on my smartphone. Which brings me to a new phrase that I recently learned of, “Sleep Procrastination”? Unfortunately, I have always been prone to the ordinary type of procrastination, relying on the stress of flying by the seat of my pants to wing me through on far too many occasions, although I am improving a little with age! Sleep Procrastination refers to putting off bedtime, or rather, sleeping, in order to read – and it is mostly refers to online reading. It is the cause of sleep deprivation, poorer mental health, weight gain and all manner of bad things. You can read more about it here, but suffice to say we really need to turn off that smartphone or whatever is keeping you up, and prioritise our sleep! Us MS’er’s are already prone to poorer sleep and greater amounts of insomnia, so why are we letting these devices dictate our lights-out time? Just do it! Turn the light off earlier tonight, and you will feel better for it, I promise. Used to our advantage smartphones are wonderful things. I have never found MS-tracking apps useful. All they do is to focus my attention on my MS, and that is the last thing I want to do. It already gets far too much of my time, my life and my energy. But there are a load of apps that I DO find useful and they have improved my level of mindfulness and calm. I have an android device and I favour apps that have a low amount of permission requests (for security reasons) and are free from the Play Store. My favourites are: The Pedometer app is great for showing me when I am starting to slow down. It can track Kmph as well as the normal step count. Not only does it encourage me to keep trying to walk as much as I can manage, if I see my speed dropping it can alert me to a possible need for more rest, or an upcoming relapse. OMM is a cute little 1-minute meditation app that is great for people who are useless at meditation like me. I find I am more likely to do a 1-minute exercise regularly than commit to a longer session. The Mindfulness Bell is great for centering yourself, taking a moment to relax and breathe properly. You can set it to ring at different times, different frequencies; just don’t forget about it heading into a work meeting like I did! Another night I went out walking and I had looked up at a full moon with the clouds racing above me, just as I was about to pass the creepy spot where 2 thieves had been hung in the 1800’s for a violent robbery and the mindfulness bell tolled loudly, making me jump out of my skin! ‘Vowel Please!’ is a Countdown-alike app that’s good for exercising the oul’ grey matter and winding down from all the monkey-mind thoughts and worries whirling around our heads. Whenever a new technology is introduced people tend to fret about it. Some people wrote warning articles in Victorian Britain about the speed of railways and how our health would suffer to travel so much faster than natural horsepower. Microwaves would be capable of frying our brains, destroying our fertility, adulterating our food, frying our fertility. Did these things happen? We can recognise panic in the face of technological advancement, but can we equally recognise when we have become obsessive about being used by a device, rather than using it for our advancement and entertainment? It is up to us to make sure that we are using smartphones to our benefit, rather than them having the power. Let me know what you think of smartphones; good or bad? Do you have any favourite apps? Originally published August 2016
What are the research priorities of the MS Community in Ireland? Have your say!
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