Ava Battles: 'People with MS need more research into their disease - we mustn't let them down'
Multiple sclerosis (MS) is a progressive neurological condition that affects a person's brain and spinal cord, and while many people are aware of MS generally and the more visible, tangible symptoms that it can cause, the effects can vary greatly from person to person and can often be invisible to those around them. What's more, the symptoms can be ambiguous in how they present themselves, and they can even come and go for weeks or even months at a time.
Today is World MS Day, an annual day of recognition and awareness for MS globally. This year's theme is 'My Invisible MS', which it is hoped will 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.
The campaign will give a voice to everyone affected by MS to share their invisible symptoms in order to challenge common misconceptions and to help people understand how to provide the right support.
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Nine thousand people and their family members live with multiple sclerosis across Ireland. According to research commissioned by MS Ireland and Novartis Ireland to mark World MS Day 2019, more than a third of the population (37pc) claim to have a family member, friend or loved one living with the disease. It also found that despite 93pc of people here claiming to be aware of MS in general, more than 44pc 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 at all.
That said, the public's levels of awareness around the more visible symptoms are relatively high, with almost 20pc of those surveyed listing two of the more tangible effects of the disease: muscle degeneration and loss of mobility. But only 8pc identified fatigue as a key symptom, despite this debilitating but 'silent' aspect of MS affecting almost 90pc of those living with the disease.
At MS Ireland, one of our key objectives is to address the lack of public awareness of the less visible side to MS, which provides the imperative around campaigns like World MS Day. But public engagement is just one of the activities of MS Ireland - another is to co-operate with the medical and scientific professions to promote research into the cause and management of the disease.
There are many excellent researchers throughout Ireland conducting ground-breaking research on this complex disease. The studies range from bench scientists looking at the mechanism of how MS operates, right through to researchers looking at evidence-based strategies to manage the impact of MS. With this in mind, MS Ireland has set up a 'Researchers Interested in MS' group, allowing those with a common interest to collaborate and share their knowledge.
Despite this, there are still many barriers and bottlenecks to achieving a real and significant breakthrough in tackling the underlying symptoms of MS. We are working to break down such impediments to collaboration and discovery, while also looking to new and novel collaborations which may provide innovative solutions. One such path lies in partnerships with private enterprise, which can provide the funding often lacking in government-led initiatives, while often providing more flexibility to operate holistically, cross-functionally, and faster.
For example, in 2017 we began collaborating with Genomics Medicine Ireland on a study into the genetic basis of MS, which could possibly lead to proactive and early detection, more effective therapies, and targeted medicines.
Within a few short months, Genomics Medicine Ireland quickly signed partnership agreements with five major hospitals across Cork, Dublin and Northern Ireland to work together in assembling a cohort of volunteers with MS to contribute to one of the largest and most in-depth studies into the condition ever undertaken in Ireland.
Expanding our partnerships outside of the nation's health system can help stoke the 'collaboration mix' that results in meaningful and actionable results, which helps to promptly progress on to the trial phase and from there to the faster development of medications and treatments.
In my experience, people with chronic diseases are known to be the most generous when it comes to collaborating with researchers investigating their conditions. This is because people struggling with conditions such as MS wish for one thing: the opportunity to cure MS, or at least reduce its impact considerably.
In short, people with MS want answers. As such they tend to be very willing to partake in clinical trials that may contribute in any way, however small, to providing solutions to this debilitating disease.
The impetus for solutions is clearly evident here, from people with chronic diseases through to researchers and doctors, but in these straitened times in our health system, it is necessary to rely on support wherever it is available to expedite discoveries that will benefit patients and their families sooner rather than later.
This World MS Day, I call on all involved in medical research and development to be more mindful and open to opportunities outside of the usual channels, so that we may more quickly advance the fight against multiple sclerosis together.
Ava Battles is chief executive of MS Ireland