185/365 – Being asked to take part in myasthenia research

I’ve recently received a letter asking me to take part in research – my first invitation of this nature.

The premise is testing how valid a new home-based self-assessment system is in charting how their condition fluctuates between consultant visits. As it can be six months or more between visits, I like the idea of having a way to monitor your symptoms more regularly. Often when I visit my consultant I have forgotten about the day-to-day and focus on the big questions. 

Clinically meaningful results 

When first diagnosed, I set out with good intentions of keeping a diary to record these ups and downs. In a way that’s partly what this blog has turned into. This system (or tool) will record ‘clinically meaningful’ results. The home tests will be formed based on analysis from a set of simple tests with your arms and legs. Participants will then be asked to carry out a set of tests at the same time for 7 days and then repeat in the same week every other month for a year.

The information I received said, alongside measuring fluctuations, it will assess effects of your treatment/changes in medication and give early warning signs of illness or any looming setbacks that your GP can ‘nip in the bud’. 

Having given it some thought, I’ve decided to take part so hopefully I’ll be able to elaborate more on the monitoring system soon. 

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