Q & As

I'm attending a research day held by St Barts at a conference centre near Westminster on Saturday http://multiple-sclerosis-research.blogspot.co.uk/2013/01/4th-ms-research-day-2nd-febuary-2013.html I've been thinking about what to say/ask without appearing to be a loon to a bunch of neurologists & researchers. 

I've chosen not to go down the treatment route and preferred to look after myself as best i can using diet, exercise and trying to reduce stress by being nice to myself. 

I'm by no means anti drugs I've enjoyed a few recreational ones as a youngster! I was up for getting Tysabri especially when my neurologist 12 years into the condition suggested it and then after dangling a modestly effective treatment in front of me he then snatched it away (>than 50:50 chance of working but an increasing chance of catching a worse disease as the years of taking it wore on) so I didn't get the chance to take the 1:1000 risk of developing a further potentially fatal condition. 

I've managed to deal ok with risk so far in my life (I've been lucky). I've only just started wearing a seatbelt regularly after my dad, when i was little, and the law changed wouldn't have someone in authority restrict his movement. He then got run over and killed on his bicycle before he had a chance to set his 13yr old daughter a good example. It's taken more than a quarter of a century but i now feel not wearing a seatbelt isn't a risk worth taking. 

I've felt that ms drugs as they came on the scene (8years after diagnosis) would have been worth taking but then I read their trial results and decided taking an injectable drug with a less than 50:50 chance of working  wasn't an equation that worked for me.

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this is what I'll be asking tomorrow -

MS treatments* appear effective for some but not others, treating vascular issues appear to be effective for some but not others, dietary approaches to disease management appear to be more effective for some but not others.

Could we conclude that MS has more than one cause?

If this is the case can we screen patients early on in the course of their disease to see which treatment is most likely to be most relevant for that particular individual?

Might this also provide an opportunity to hold meaningful trials that could recruit patients from a narrower base and more effectively target future treatments?

if there's a chance to have a conversation with anyone there these are points I'd like to make:

I haven’t liked being faced with the prospect of taking a drug that has a less than 50/50 chance of being effective. I think I’d think twice before taking aspirin if it had those odds and that’s before we even start to consider the risks and benefits a treatment may hold.

Creating more effective treatments by targeting drugs may reduce the potential customer base but collectively we’re a massive market. Surely there’s room for smaller but perfectly formed pharmaceutical companies out there that develop drugs for some people very well rather than serving alot of us, badly?

*viewing MS as being vascular in nature or primarily an auto-immune disease. I believe MS can be all these things. Binary doesn't work for MSers