@sburall

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sburall

MS literature reading group?

I was diagnosed with MS earlier this year. I have a biological sciences degree, now nearly 30 years old. Part of making sense of what's been happening to my body has been to start reading some of the scientific literature. I've found it quite helpful in both understanding what's happening to me and giving me a slightly greater sense of control. It certainly helps me in my conversations with my neurologist. But, I'm not a practicing scientist, I'm not an academic and so far have been a bit of a magpie; reading a bit about the drug I'm on, a bit about the causes and treatments for fatigue, and this and that. I wondered if there might be a few people out there who would be interested in setting-up a reading group to explore some of the scientific literature about the disease together? My thought is that we'd pick a topic, identify a paper each that we'd read related to this. We'd then come together to discuss what we've learnt. My thought is that we'd do it online every 6 weeks or so (we could experiment with what time gap works). And if things are tough at that point and it's difficult to do any of the reading that time then that's fine, this isn't intended to be work; more like something between intellectual stimulation, a bit of learning to take some control and a very good dose of being social. Topics I'd be interested in understanding include: - what we know about the causes of MS - how the immune system works (I know which bit of the immune system the drug I'm on targets, but I don't understand what that bit does - and the immune system is fiendishly complicated and anyway, the science has advanced significantly over the past 30 years) - more about fatigue - etc etc If we're being very ambitious we might consider writing up what we've learnt for ourselves as a kind of growing resource, and even perhaps putting it on a blog somewhere, written for a lay audience. In terms of practicalities, from my perspective the best time for this to happen would be late afternoon or early evening UK time during the week. I'm really aware that some or all of this might exist somewhere and I've not discovered it yet, so also happy to join in, or continue my solo eclectic scan across the literature when I have the time and energy. If you are interested then let me know in the replies and we can take it from there. Just to say that I normally only make it onto here on Fridays because of my work patterns, so don't be surprised if there's no immediate response.