Getting our mojo back: Barts-MS Blog #ThinkSpeak #MSResearch #MSBlog #LostMojo
Dear Readers
Thank you for your patience. Some of you are alarmed at the suspension and subsequent closure of the blog. Some of you may have read my post on ‘Have we lost our Mojo‘ and the comments and discussion it generated. As a result of this we have decided to close the blog and reassess how it needs to evolve. Is it still needed? If yes, in what format. How to we control its content? We acknowledge that it is widely read and that some of our readers value our commentaries (thank you). However, with this comes extra responsibilities, which we need to reflect on.
The following was our original mission statement:
“The aim of the Blog is for the Barts-MS to update you on the latest research in MS with an emphasis on the research we are involved in. A major reason for maintain the Blog is to thank the funders of our research. Funders encourage us to engage with the general public, people with MS and their families and other people with an interest in MS. We believe you have the right to know what we are spending your research money on! The purpose of our work is to improve our knowledge and understanding of MS with the goal of improving the lives of people living with this disease.
For us as a group of MS researchers the blog allows us to reflect on our work, assess its potential impact and plan for the future. For some of our research projects we need your help; this may be as a volunteer for a particular study or simply helping us to spread the word. A major benefit of the blog is that it encourages reflection and team work and provides us with an opportunity to celebrate our successes.“
We will decide over the next few weeks if this mission statement is still relevant, have we stuck to our mission, have we strayed too far from it and whether or not it needs to be changed. While we considering all these issues you are welcome to comment.
This blog is somewhat tedious now. I like it when you're political. At least that's intellectually riveting.More politics, please.
Hope. I learned the meaning of this word by reading your blog. Don't stop.
Thank you for all your help and advice it has been invaluable. Please continue this work to give people with MS empowerment into looking after their own chronic disease and hope for the future. Not all neurologists care as much as your team and it is so useful to have all this knowledge to help is to make informed decisions. Please please please please you have to continue with this blog. You're clearly a motivated and caring team and what you're doing here is invaluable.
I'm quite scared at the prospect of this blog shutting down."The aim of the Blog is for the Barts-MS to update you on the latest research in MS with an emphasis on the research we are involved in." Have you met your brief? Absolutely you have! Anyone can read a research paper, but to understand the nuances and the significance of the findings they need to be interpreted in the light of current knowledge and research (which includes that of others) as well as understanding the research process itself and the impact of the wider political climate on our health. Have you strayed too far off the original aim? Far from it, I think you are truly educating us. This is not something I could achieve on my own nor that any other site provides. This blog really does bridge the gap between patients and academia. I really appreciate hearing the various opinions of all of the team including the sometimes differing opinions and interpretation of the research.This site might not carry the same academic kudos as other activities (or indeed attract the same finance) but if you're looking to do something that actually makes a difference to the lives of people with ms, that actually helps patients, then this is it. Please do not give up. I thank you all for the hard work and sacrifice put in by the team to date. You are by no means past your sell by date. By all means change the format or frequency of posts if this would help too reinvigorate and inspire, but please consider the impact of stopping altogether. You would be greatly missed.
Please keep the site going! It is an invaluable resource for pwms. It helps make sense of all the complicated data coming out of the medical research community. This site has empowered me and many more by the looks of it. I would also like to thank you for your service to the MS community.
This blog has been so very helpful – like some of the others, I don't know how to convey just how much it has helped and how much I have learnt from it.For a long time I spent a large part of my day reading and trying to understand the posts. Once NEDA was achieved – because of what I read on the blog – I didn't spend so much time any more. Partly because I gave up trying to understand the science – I still read all the other posts. Is the blog past its sell-by date? Absolutely not. But if I find it difficult to make time to read all the posts – then how much more difficult it must be for Team G to keep it updated, to moderate comments, to answer questions from around the world, …As Steve S said: "If the blog is too time consuming then scale back, maybe weekly posts." But I really hope the blog continues. And a BIG THANK YOU for everything
You have been a beacon of light that guided me since the difficult times of my diagnosis .. Without you I might have gone the "wait and see" approach and I might have not been NEDA over the last 2.5 years. You have never lost your MOJO , keep beating that NEDA drum till the word hears it … Please come back
Dear Team GI have been following the blog for the past 6 years and I do remember the beginnings of the blog in the same way as my diagnosis which I received around the same time.I could have written a book about the diagnosis and all these traumatic moments that I went through after I had been diagnosed…What is more, it is right here and right now that I know that at least 95 percent of the comments above elaborate on almost every aspect of saying "thank You". Therefore, I decided not to write an essay, but to come up with some observations and ideas that might be a little bit of any help in the current situation.Ok, let's start:1. As far as I know, there is no other blog in the entire universe with such a scientific attitude towards MS as you represent.2. You do stay on the cutting edge of research and innovation. It may turn out that in 100 years people will still repeat the words like "it's astonishing that they were able to imagine and think about such groundbreaking things back there and then".3. You taught me and millions of people the details of the pathology of MS in ways that I/we have never imagined ever before.4. You taught me how to approach various comorbidities in relation to MS.5. You gave me new hope six years ago and it is you who have kept this flame burning ever since.6. You organised various events highlighting the importance of fighting with MS.7. So far, I have saved 474 articles which focus on the plethora of issues/ notions/ aspects/ and everything MS related, which saved my life, and it is just a fraction of what I have managed to read and get to know thanks to You.8. Your correct, bright and enlightening pieces of advice led me to many tense situations with the doctors who always knew better than you while they were not exactly right.9. You explained to me the ins and outs of DMTs in a way that no one else has ever even attempted.10. For the past six years, you have been analysing, creating and developing the ideas that are groundbreaking while working on keeping a fresh attitude and being innovative.Judging by the size and significance of the blog, it seems that it has already become "Something" (with the capital letter) like the MS platform where ideas are exchanged and discoveries are presented in a genuine manner.Undeniably, the workload is huge and you need to think about how to manage it in order to let yourselves focus on your research. Moreover, it looks like you might need to reschedule the days and amounts of updates on the blog, someone or even more than one person who could transfer your ideas and take care of the blog under your supervision (the administrator of the blog has already been suggested by you). Perhaps, certain additional technological solutions that would allow you to embrace this amount of work.Please remember us.Thank You for everything so far.
Thank you!
I have read all these comments once and have just reread them again. I had no idea that we (Barts-MS) had such a following. It has been a very warming experience. I am now in a position to apologise for suspending and then closing the blog so suddenly; a less drastic approach would almost certainly have been more appropriate.
Lol. Thanks again!
It is clear to me from reading the above comments that the majority are from PwMS for whom your blog has made a positive difference (I am one of them and one of the above comments is mine). We can ignore the trolls who just could not resist being negative.It is also very clear that the blog has given access to the Barts team's knowledge to people all around the world, and given them access to knowledge and expertise which they would not have otherwise had (I am also in this category)So – all of Team Barts can hopefully now see that their efforts have made a difference to PwMS. I am so pleased to see the new post about the blog continuing, and will be keeping an eye out for the link to be able to contribute my few pennies/ cents/ shekels to keeping this resource alive.You have made my day a good one 🙂 🙂 🙂
Please don't close this blog. It is so helpful and it gives us hope. Can we crowdfund to keep it going?
Thank goodness you're back ,it was through this blog I gained hope after I officially became diagnosed with secondary progressive MS . I could find little about what was happening in the research for SPMS ,then I came across this site where I first found out about MSMART trial, which I have now been taking part for the last 18 months .Keep on updating us with the new research and also giving all us needs hope for the future.
I didn't visit Barts MS Blog often, but when I did, I found it very useful, informative and technical.It is always useful to see the medical viewpoint of a condition that is so little understood.