How MS Piqued My Interest in Ethics

Often people ask me what I do all day given that I don’t have a full-time job anymore. I assume the question is coming from a positive place - that there is a genuine interest in how many chronically ill people spend their days. If we don’t talk about these things, then we miss the chance to clear up any misconceptions.

For a person who rests a lot, I don’t sleep great. I would estimate that fatigue swallows up about a quarter of my active hours. My afternoon nap is essential. I start to dip after lunch and usually spend between 2pm and 4pm resting under the duvet. It’s not deep sleep, more like a quiet place where I relax before my family comes home and it all kicks off! I put my phone on silent and if the doorbell rings, I ignore it. It takes ages for me to get downstairs and the person who rang the bell does not want to see me in full bed-head mode.

Another quarter of my day is taken up maintaining my MS. Doctors appointments, yoga, clinics, pharmacists, waiting, researching and taking care of my mental health. When I have an unpredictable bad day, nothing much happens. My family knows the drill. I have ‘let down’ all of my friends at some stage with last-minute cancellations. Believe me, I already feel bad enough when this happens and I thank my pals for their understanding.

I keep doing the chores I can manage but it definitely takes me longer. I do the weekly shop early on a Sunday morning and I feel shattered (but content) afterwards. Ironing is impossible because of my tremor. My kids are fairly independent in that they cook for themselves and maintain a decent level of hygiene. Expectations have been lowered!

Ethics in clinical research

I rarely get bored. I try to do something every day and have become involved in things I never imagined I would have - like gardening. Recently, in fact, I followed a EUPATI course about Ethics in Clinical Research. As a result, I got involved in the National Irish COVID-19 biobank-Research Ethics Committee. This is a national ethics committee established to provide ethical oversight of a nationwide project involving hospitals and universities across the country, creating one large biobank to help research on COVID-19 in Ireland and overseas. My perspective as a patient and my lived experiences are considered a really important contribution to the ethics review process. You can find out more from this short video.

While patient engagement (or PPI: patient and public involvement) is becoming more systematic in ethical committees, there are wide differences at country level in approach and procedures. I participated in this PEOF virtual session which explores national and regional approaches and the impact a trained representative patient on ethics can have. I hope you find it interesting.

If you know somebody living with MS and are afraid to ask questions, don’t be! It’s better that we can set the record straight and find interesting things that we can do together.

The views and opinions expressed here are those of individual contributors and do not necessarily reflect the views of the Multiple Sclerosis Society of Ireland. Whilst every effort has been made to ensure accuracy of the information provided, the editor is not responsible for any error or inaccuracy contained herein.
If you have been affected by any of the content, please contact the MS Ireland Information Line on 0818 233 233.


Great blog this week

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