I’m sure I’m not alone in finding that being diagnosed with MS leads to feelings of a loss of control. It’s such a variable disease, affecting some people very mildly and attacking others swiftly and brutally. In the early stages at least, it really isn’t possible to say how it is going to affect you. You just have to wait and see.

One thing I’ve found has helped me has been to lean back into my undergraduate scientific training (30 years on, the science has moved on in such exciting ways) and to start reading the literature about MS. In particular, I’ve found understanding how the drug I’m on works and what the science tells us about fatigue helpful in two ways. First, just being able to picture what’s happening in my body gives me more agency (not sure why, but it does so I’ll go with it). Second, it has helped me to work out what it is I need to speak to my neurologist about, and what, right now, is just a distraction.

But, I’m finding it hard to motivate myself to keep doing it little and often. I seem to be doing big bursts and then doing no reading at all. Partly this is the fatigue; I sometimes just don’t have enough energy to do more than switch off. But other times I think I’d find some sort of external motivation helpful.

Which got me thinking….

The MS literature covers a vast amount of ground, from understanding genetics, to molecular biology, drug trials and statistics and then into the hormonal system, through psychology and so on. My grasp of some of this science is tenuous at best. So I wondered if there might be others with an informed lay perspective, but with different scientific (or none) backgrounds who might be interested in pooling experience and knowledge.

Which led me to wondering if other people with MS (or affected by family members or friends with it) might be interested in joining an MS Literature Reading Group. My current sketchy idea is that if there’s interest it’d meet virtually once every 6 weeks.* We’d agree a topic beforehand and identify a paper each that we’d read related to this. We’d then come together to discuss what we’ve learnt.

It risks becoming a chore, and so I think we’d have to be clear that if things are tough for anyone at that point and it’s difficult to do any of the reading then that’s fine. We shouldn’t see this as work; more like something between intellectual stimulation, a bit of learning to take some control and a very good dose of being social.

Off the top of my head, 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, plus the immune system is fiendishly complicated and the science has advanced significantly over the past 30 years)
  • more about fatigue
  • etc etc

But I’m largely motivated to understand more and so not precious about what any group might focus on.

Always one to run before I can walk, I was also wondering whether finding a way to summarise what we’ve written in lay terms might be helpful for us to keep building on what we know. And then if we’re going to do that, might that perspective on the literature from people with MS be useful to publish somewhere for others?

Of course, its also more than likely that all this is happening somewhere already and I’ve just not found it. In which case, I’m happy to muck in! Let me know in the comments if you’re interested.**

* from my perspective the best time for this to happen would be late afternoon or early evening (UK time) during the week, but we’d have to work out what works for everyone and be flexible.

24 September 2021

** I’ve also posted on Shift MS if you’re interested