MS Life 2012, Some more thoughts.

Whilst Prof G has thrown his oar in, I suppose I will add a little bit too


The experience of the "meet the scientists" was as ever a postive one, speaking to MSers their partners and their children, parents and friends. We hope likewise that it was a positive experience for our visitors also. I sometimes felt that we are too intimidating for some who ran away when we came near. Maybe the bright orange T shirts scared people... I should have done black like the others-more flattering to the belly. We had a very busy time, especially on saturday and we were so busy we did not see any of the presentations or have time to properly talk with the guest speakers, who wanted to talk to us, or any other stalls for that matter. 

It is a learning experience for us also. Meeting you guys, can help question some of the preconceptions of MS that many researchers not meeting MSers probably have. So any students/researcher reading this blog who have not spoken to people with MS, do so ASAP- as you can't research in a bubble!


Despite my MouseDoc T shirt, we did not get a visit from a person who was complaining about the use of animal in research, but Prof fffffffrench-constant and Franklinstein did and I understand gave a ripping answer to raptureous applause of most of the audience


As ever the post code lottery of care was in evidence and there is a real question of how some people get care and drugs, whilst others just can't. How do you get the PCT to fund sativex etc?. 


The Neuro experience is often not a good one, with poor communication (Sometimes apparent poor knowledge-remember your Neuro may not be an MS specialist) from the Neuro and a feeling that it is often the "same old, same old" until next year. The Neurologists reading the blog should think about this, as in many peoples eyes you are not "Gods gift" and in many cases you just offer no gift.

Pharma needs to do much more to explain how their drugs are working at a basic digestable level. I know pharma produce glossy vidoes, books etc. as part of the marketing experience for neuros and GPs, but equally the person recieving the medication should be better catered for. Maybe they are doing this, but you (pharma) are clearly not getting your message across well enough. If you (Pharma) have any good videos please send to me and may be we can use elements as part of the educational process in the future.

People with MS are not a MARKET they are people.

Whilst some people had travelled great distances, it was clear that there were restricted regional accents indicating that the location favours a certain few. Whilst I think the venue at the Manchester Centre is great because it is flat and bright and an airy venue, one wonders if the congress should be more mobile so that we can hear different regional accents. However, this is up to the MS Society and where ever it is we will be happy to attend again. I should say also that we have done regional variations of the theme and we have done MS life in different venues, which were not as good a Manchester. This is perhaps where other scientists and neurologists can be more pro-active in having research/open days and engaging with the public. We know there are others following in  the footsteps of our research day, such as the ones we did in january (The best video (involving me of course) is yet to come!). Maybe you can get your local MS Society Branch to nudge your local clinics to do some thing

Whilst it was great to meet the thousands of attendees, we also have to think how we can engage with the many people who did not dare venture to Manchester. I understand there were feeds to the talks which is a  good start.


So to our new readers, first welcome, second spread the word of the blog to your friends, they can come and visit. If they like, they may come back if not they won't.

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