There seems to be some misunderstandings in relation to the “Digesting Science” series of post. I would strongly recommend that you look at Alison Thomson’s site, which explains her work and the motivation behind it. Her work was not done for the blog. From our perspective it has been great collaborating with her; not only is it interesting and engaging, but a fresh look at the way we communicate with the public. The fact that it is generating conversation and debate means it is achieving something we have difficulty doing with our daily posts. Any ideas and help in communicating science and MS to the wider public would be much appreciated.
Other topics Alison has covered that are worth looking at are “The Anatomy of Multiple Sclerosis” and her degree show work on the “The Chronic Facility”.
"a fresh look at the way we communicate with the public."Prof G,I'm really not clear why there is such a focus on communicating with the public. Given that MS is not uncommon, most people know someone who has is (or had it). As sufferers (most who use this site), we are well aware of what MS does and how grim it can be. If you did a poll on what is most improtant – (i) making sure the general public ar emore awar e of mS, or (ii) geting some really effective treatments approved, I think it will be pretty clear which will come out on top.What I would like to see is some sort of analysis showing the likely timeframe for future treatments / breakthroughs. You say you team are confident of treatments to slow / stop progression, but when might they be available. Is there any chance of treatments which might stimulate some repair? If so, in what sort of timeframe? When will the research being undertaken by your team e.g. neuro-protection start delivering actual treatments?I think the risk with blods such as these, is that they can quickly mushroom and move away from the original aim. I have MS and know what the damage to myelin has done – I live with the consequences every day. Illustrating this by fruit and cheese straws doesn't add to my quality of life.If you had MS, your main focus would be to ind out what treatments are available now, will be available int he near future and will be available in the near future. I really appreciate you quick interpretation of research papers etc. I'm less keen on the mugs guide to neurolgoy stuff or the wholly stuff. Perhaps it's time to ask the users what they want (the above is just my opinion).
I’m broadly with the poster above. Why is “generating conversation and debate” on this blog an aim? I would prefer a blog that was ‘just’ accurate, and informative. Stirring up debate for the sake of it is surely just a waste of time.I like this blog a lot – it used to get new posts a few times a week, which was fine. Now you put up several stories a day. This must take time, and err… haven’t you got more important things to be doing?? I’m sure a junior could take over the bulk of posting to the blog, leaving you more time to save us all from MS doom.
"Illustrating this by fruit and cheese straws doesn't add to my quality of life.""haven’t you got more important things to be doing??"I couldn't agree more! Prof G, I respect you for doing this but I think a few posts of what you think are interesting research advances and you focusing on solving the disease rather than doing lots of posting and videos. I see that Alison is doing her work for her degree, which is obviously good for her, but there is no need for it for us.
Prof G,I'd like the blog to focus on assessing key research findings which are published and providing information from the conferences you attend. The provision of information (lots of it) will never be a substitute for effective treatments. I don't think the so-called debate on this blog adds up to much – we are not expert enough to contribute on a discussion about the B cells. What I need from a research blog is some hope – hope that in the future progression can be slowed / stopped or functions may be restored (partially restored). I liked the blog better wheh you posted a couple of key research papers a week and provided your thought. I like updates on the progress made by your team. I'm much less interested in the Janet and John stuff – as the poster said above – we know MS better than anyone else. Please stick to your helpful interpretation of research articles and keep us abreast with latest trial results etc.
In response to the posts above. A lot of you are expert MS'ers and know a lot about the disease and want us to get to the chase or focus on the big questions. Others are new to the disease and don't what T and B cells are. So trying to get the balance right is difficult. One way around is to sub-categorise the posts around the main aim. As for engaging the public; this is very important for us and we do need your help. We have a large research programme working on preventing MS. For this programme to be successful we are going to need your siblings and children to engage with us. What we will do is a web survey to get some feel on how to address all these aims and to set priorities. I am aware that progressive MS is clearly the most pressing issue and we will continue to focus on this. However, other issues like symptomatic problems are also important and can mean a lot to people.
I have to make some serious decisions about treatments soon and use the blog mainly for information.I don't entirely agree with the previous posters. As somebody said earlier, reading research news can be like trying to translate from a foreign language. Since we are stuck with MS we might as well try to learn the language. I'm quite happy with Neurology lessons. Re 'making sure the general public are more aware of mS': I don't think the blog is trying to do that. The videos were probably made for the general public and it does no harm to put them here too. And I found at least the first one quite useful. Re 'haven’t you got more important things to be doing??': I wonder about that too! but i'm not complaining
Re 'Any ideas and help in communicating science and MS to the wider public'Maybe I am showing my ignorance now, but I was amazed to read, on a blog/chat page, of a lady of at least average intelligence who has been an MS sufferer for 25 years who wrote that the realisation last weekend that she was not to blame for having MS was like having a heavy weight lifted… Before we address the question of communicating (science and) MS to the wider public I would want the responsible professionals to ensuring that their patients are not causing themselves additional stress by believing they have done something wrong and brought this condition upon themselves. I too have been told that I must have been a bad person in a previous life and also, by someone else that it had been proven that promiscuity was the reason I now have MS … Having done my homework, and thank goodness for the internet, I was able to discount the latter and my intelligence told me to ignore the former suggestion outright. My point is though that if patients themselves are still confused how can we eduacte the wider public about MS. People with MS should be some of the best ambssadors…
Re: "My point is though that if patients themselves are still confused how can we eduacte the wider public about MS. People with MS should be some of the best ambssadors…"A very good point. If you have been following the thread on MS prevention on this blog you will realise that all the preventable factors (vitamin D, smoking and possibly EBV infection) is going to require the public the learn about MS and engage with us to make a real difference. Using the social sciences will be critical in getting the message across; we are therefore very open to any ideas that can potentially reduce the incidence of MS. Committing time to this blog is therefore not wasted time; without a dialogue how are are we going to get anyone to adopt our ideas and help with the project. Finally, working on prevention does not necessarily detract from our other goal of treating progressive MS. It appears as if the same factors that are linked to MS causation may also drive progression.