by Colin Munro
Hello everyone! My name is Colin Munro and I am a medical student at the University of Cambridge, School of Clinical Medicine. I have been working with Ben, Mark and the Myelopathy.org team to see if we can better understand how DCM (Degenerative Cervical Myelopathy, an alternative name for CSM) affects you. In particular I am trying to work out what comes first (i.e. the degeneration or the myelopathy), with the hope that this might better allows us to catch the condition early, which is a real problem at the moment. We also want to discover which symptoms and effects on life are most important to patients, such that further efforts into research can be put in those areas.
The Project’s Background:
Our project had its beginnings all the way back in September 2016, just before I joined the team, with the Myelopathy Day at the University of Cambridge, where a small group of people described how DCM affected them. There were some fantastic insights obtained from that day, giving us a long list of symptoms and ways in which DCM can affect your life. This was eye opening, as some of the descriptions weren’t signposted in medical textbooks! We also agreed on a way to group these symptoms and effects together into categories. However, in order to ensure these results represented everyone with DCM, we needed to test the results in a larger group of people, to see if we had missed anything. To achieve this, I put together a survey that went live in January 2017. Since then over 300 people have taken part! A massive “thank you” to you all! We again managed to get some great results, especially regarding which categories patients find most important. I have been fortunate enough to present this work to both national and international audiences at Oxford and Magdeburg, Germany, respectively.
Where are we up to? How can you help?
Nevertheless, following this first survey, quite a few of you mentioned symptoms and effects on your lives that we hadn’t previously considered. This means we need to add these to our lists and then re-survey everyone, to see how common these symptoms are amongst all DCM patients, to ensure they are also fully representative (for anyone interested, we call this process a DELPHI study). If after completing the first survey you agreed to be contacted again, we will do so by email (and you won’t have to complete those tedious demographics questions again!). However, if you haven’t already taken part, there will be a version of the second-round survey for those who didn’t do the first one online at Myelopathy.org. The second-round survey will be much shorter to complete (fortunately), as we no longer need to ask about which categories are most important to patients.
Thank you all in advance for your help!
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