Tuesday, 17 May 2016

ThinkSpeak: Lost our Mojo-2?

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.

165 comments:

  1. "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"
    I think the blog perfectly represents you aims as above. My only comment is that sometimes there is a tendency to be over scientific, which for those of us not in the medical profession may sometimes feel a little difficult to follow. However you need to reach a wide audience and generally I believe you achieve this.
    As a person with MS I find your blog refreshingly different from the other well known MS online sites that are available.
    Please continue with your informative interesting blog!

    ReplyDelete
    Replies
    1. The same for me. This is by far the most informative site to keep up with progress in MS research, please keep on doing this important work

      Delete
    2. Yes, I value your informative input about research matters so much - please don't stop this blog. You give me hope that there are well qualified people out there who are not just on the ms gravy train.

      Delete
    3. As someone associated with research, I find it an incalculable source of information for physicians, patients and researchers. The time and cost to maintain this blog is outweighed by the source of information, content, researcher analyses and discussions between your staff and those in the comment section.

      You have no idea how it gives hope to many and opens the doors in the observation of various treatment protocols. Yes, there are controversial discussions and viewpoints on here that may impact various parties and could put the research staff in the crosshairs a times. Wandering into the political aspects of healthcare might be bit off track.

      I am rather perplexed by this drastic and sudden decision.
      I only hope pressure is not being applied by outsiders, institutions or powers to be to shut the blogs down.

      I believe you are right on target with regards to your stated mission objectives.

      Delete
    4. I echo the positive comments. I have not found anything remotely resembling this blog in terms of its information content and style. I find it a really valuable resource and it makes a positive difference to how I feel about my condition. If you do decide to stop producing it, can you assure us that the existing posts will remain online as at the very least they provide a comprehensive collection of very useful and informative posts.

      Personally I hope you will decide to continue with the blog in its present form or similar.

      Delete
    5. I agree that the blog is invaluable. As a PPMSer, with a confirmed diagnosis last year, I find it very useful. Keeping up to date with what is going on in the research world has given me hope for the future. I find a lot of it goes well over my head (I failed Biology O level) but realise that this blog serves many diverse people and anyway I can usually understand the conclusions! I looked forward to reading the daily emails and miss it greatly.

      Delete
    6. you have helped so may understand MS ty all

      Delete
  2. Would totally echo the above - this blog is a really important source of high quality information on ms research for me, and I particularly appreciate when it has been translated a little bit for the non-expert. Please don't stop blogging, we need you!

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  3. I don't understand.... I read your blog daily and it is my source of information and hope! PLEASE do not stop it. It is so much more reliable than other sources and the way you interpret the science CANNOT BE FOUND ANYWHERE ELSE.

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  4. I find your blog invaluable, as a person with RE-RRMS it's a great comfort to see all the fantastic resarch you all do, even if I don't understand some of it! Hope you find a way to move forward soon. Met MD at a children's information event recently, great guy!

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  5. This comment has been removed by the author.

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  6. 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.

    Let's face it you never do this. Bye guys.

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  7. This blog is probably the best source to get updated in MS and discuss i have found. I really would hope it gets back on at some point, i can understand keeping this blog its probably very time consuming, make sure many of us readers really apreciate it.

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  8. I am sad to hear that this resource might close. It is extremely valuable to the MS community. I do understand the time constraints, frustrations. As noted to you, we can offer a solution in at least part if interested.

    I have felt the same way at times... All this additional work and MS Unites is alot of work, 25-30 hours per week x 2 people and for why?

    While a great many across the globe are very appreciative there are those that attack us for trying be supportive of patient associations, research and reporting whats going on in the universe of MS.

    There are many MS sites on the internet yet none like this one where patients and families can touch that which performs and informs research about what they endure as patients and families.

    Barts MS in whole, not just the blog but you as people inspire those of us with MS perhaps more than you realize.

    Readers / commenters do screw up at times, I have, I am sorry I have. My MS sometimes just results in my already excessive personality going southward more.

    Should you all decide to close the blog that'd be a shame though I do understand. Its time consuming to be sure and you all also have lives to live.

    If you'd like to explore potential solutions I believe we can create one.

    All the work and efforts you have done via this Blog have helped change the world and for that I am truly grateful.

    ~Cynthia~

    ReplyDelete
  9. This comes to mind, I actually wrote this just yesterday.

    Diagnosed with MS life became a mess
    I asked many times why me?
    No answers did come, just tears, anyone?
    I asked many times why me?
    One day enlightened no longer frightened
    Need not ask anytime now why me
    We all are all at sea, we share a disease
    Lighthouses for each other to see

    ReplyDelete
  10. First of all, I am afraid that I am writing as Anonymous, wiil do an account for future posts.
    I am writing from Italy, I am a PWMS and like many other people in all the world, I find your blog very important and well done.
    It is very reassuring to know that valuable researchers as you an your group are working for us, and very important to read your opinions and explanations about current and future therapeutic stategies.
    Many thanks, really.
    P.S.
    I think that Anonymous posts should be disallowed, in order to avoid troll posts

    ReplyDelete
    Replies
    1. While I agree that trolls are obnoxious and distracting, I disagree with the notion of suspending anonymous posts. Many of us in the MS community value our anonymity for very obvious, very legitimate reasons. I believe doing this would have the unintended consequence of removing not just the trolls, but most of the commentary that occurs on a daily basis on this blog. I learn almost as much from the discussions of the articles as from the articles themselves.

      Delete
    2. I agree. FYI, you can choose Name\URL instead of Anonymous to identify yourself with a chosen name instead of Anonymous. I would also like to disallow the use of Anonymous....

      Delete
    3. I agree with anon 8:44 pm. It allows us to speak about very personal things. Even having a pseudonym would identify me. What I would say, bloggers shouldn't be patronising and need to realise that some pwMS are newly diagnosed. I don't mean the Barts team.

      Delete
  11. This blog is a good venue for explaining the science behind a complex disease. Also, it gives people affected by MS a forum to voice their opinion and comment on research that hopefully will lead to a cure. I particularly enjoy the posts on the possible causes of MS and the potential for repair and neuro-protection. Lastly, the blog provides a platform for MSers to connect with others and to feel that they are a part of a bigger community. This is extremely important as this disease can be very isolating which is detrimental to overall health.

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  12. Re: Is it (the blog) still needed? YES YES YES.

    ReplyDelete
    Replies
    1. Goodness, yes. I have had MS for 15+ years and this blog has been a wonderful source of information and interest. Some of it I get, some of it goes over my head, but that's absolutely OK: it is wonderful to feel involved and not talked down to. A person does not have to understand every detail to learn a lot.

      Thank you for all you have done and the enormous amount of effort that goes into the blog. I do so hope that it keeps going.

      Delete
  13. This blog offers me as much value today as it did when I was first diagnosed.
    I felt like I'd lost an ally when I saw it was closed. I really hope it returns.

    ReplyDelete
  14. I read this blog every day. It is a treasure of high quality knowledge about MS. Please continue your good work in some way another.

    ReplyDelete
  15. I visit this blog everyday. It is a treasure of high quality information about MS. Please continue this blog in some way oe another.

    ReplyDelete
  16. I love what you do and I hope you continue. There is no other resource on the internet like this, where actual data and facts are aggregated and presented. If you stop posting this information...I don't know where we will continue to get information like it.

    ReplyDelete
  17. Turn the comments off on most posts, require a login, and redirect most chatter to the monthly free comment post. This blog is too useful to go under completely but I can see the time-consumption and passive aggression wearing on you as a group. Maybe most posting could be automated into a daily summary: ie, three papers came out, here are the headlines and topics.

    You might also consider making the daily update a task for an intern or fellow. It has strong public communications and research components and surely would not be seen as make-work for the right medical comms/admin student.

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  18. this blog has been good for me and thanks. it's been a great platform for all with ms

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  19. this blog has been great for me and for all with ms,i apresehat what I've learned thank you

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  20. Please, please come back! Just seeing the vast amount of work that is going on in the research field makes me a little less scared about the future...

    ReplyDelete
  21. Such a shame to see this end. I think that from the ms community there is a resounding need to keep it going. So informative and allows me to feel I have some knowledge about things, and as they say, knowledge is power. I think it would be a huge loss to us mser's for it not to continue in any format but obviously this is a decision for yourselves. Good luck in whatever you decide and thanks for all the work to date.

    ReplyDelete
  22. c/p-post);
    As the solution for this f%ù£µ disease most likely lies in pharma, this blog is/was a very good effort to keep level-headed in the monthly MS-'breakthrough'-news we get from other sources (with more questionable motives).

    I got withdrawal symptoms from its closing The science flies over my head more often then not tbh, but that's not the blog's fault really :)

    ReplyDelete
  23. Wooooow!!! I was really sad to get to the Blog for my daily reading and see that it would come to an end.
    I was so sad that I sent one to NDG email asking what would have happened. =((

    This space is extremely important!
    The Barts-MS, willingly or unwillingly, created a unique Space for publication and reflection/discussion on Science around the MS, which in most technical, scientific, it can be the publication it goes beyond the barriers of Neurology/Immunology.
    The Blog can travel between the conventional treatments for MS, through holistic therapy of the disease and going to the politics surrounding the licenses or not a treatment, for exemple.
    The Blog isn't only scientific information, it is quality information made by you who are living in routine laboratories and clinics for us who have the disease and other clinical researchers, Big Pharma, etc. ...
    Also I personally I feel challenged every day to remember concepts and go in search of knowledge to keep pace with discussion and publications, I feel really "my brain" is being put to work. Please do not give up this space!

    I suggest the creation of an endowment fund, in the style that promotes by the Wikipedia, which gives anyone and the amount that suits you.

    I also think that trying to extend the contacts of the Barts-MS and MS Brain Health with Multiple Sclerosis Research Centers and the Societys in other countries will be very valid and very interesting.

    ReplyDelete
  24. And as the purpose of the Blog, your Mojo, I think that since I follow the Blog for nearly 01 year and a half, comes keeping its essence which is publish and reflect on top of science held on in, be it good or bad, in addition to promote new research around issues still precarious on the disease, as neuroprotection, possible causes, etc.
    The essence remains blog is still here ...

    ReplyDelete
    Replies
    1. I went to another "searched" while in my work interval on Google and definitely at least in Portuguese, English and Spanish there is nothing comparable to this Blog where science is treated realistically demonstrating unproved without hard work and without reflection on scientific research evolouíra nothing positively. Also this is the only place where we have MS are treated isonomic way, or even the technical issues are exposed in a clear and direct way, without the pride that often involves "scientific academy or neurologists themselves".

      Mojo is still here!

      I wondered the work that must give you to keep this space every day working with high-level information, so I still think that creating a space in the Blog for donations for its maintenance and even to boost other clinical trials that appear to long walk would be very valid.

      Delete
  25. yes, yes, yes also - it's an excellent source of serious research in understandable words and comments and the best, most up-to-date info I as somebody with ms have found. Please do not stop it! Your posts are often linked to from a specialised dicussion group of people on a particular medication, so beyond your readers of the blog they potentially benefit another 3.000 + people with ms!

    ReplyDelete
  26. This blog is one of the most powerful tools available to those with MS and their families. It gives vital information and hope to us all. We know how hard you all work and how dedicated you are to finding ways to combat this awful illness. Volunteering any help and support I can give if you need it xxx

    ReplyDelete
  27. I don't think that I personally can give you any suggestions for the blog, I am not qualified for it. I like getting my daily dose of MS research information. I have to admit half of it is beyond me as I don't come from a medical or biology background. But I really enjoy reading the ClinicSpeak and ResearchSpeak posts. The brain health initiative has been a real eye opener. I am glad that this is just a temporary hiatus. You guys definitely deserve a break. I know the work you are doing is completely voluntary. This blog gives me a lot of hope and I like to say that it is one of the many DMTs I have tried.

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  28. This blog provided much needed information and hope when my daughter was diagnosed two years ago. I really hope you decide to keep the blog going, it is an invaluable resource for ppwms and their relatives. Thank you for all your hard work and dedication.

    ReplyDelete
  29. I believe that this is an important moment in the world of MS and we need voices that tell the world that is a very serious disease and that there is that hit it soon and strong. We need combatants who speak loud and clear from a change in the attitude and therapeutic in the diagnosis and prognosis early. We need y

    ReplyDelete
  30. I've been a keen follower of this blog for many years. It has given me a lot o valuable and trustworthy information about different aspects of MS and the the bad, the god and sometimes even interesting that is connected to this malevolent decease.
    The thing is that it is difficult to find a place on internet that is not only trustworthy but also gives the possibility to ask questions and interact with you researchers.I can always read stuff on pubmed but who can explain to me when I don't understand.. That's what this blog has given to me and that's what I would hate to lose. But of course it takes a lot of effort to make things work and I admire you for that. Well at least what you did made a difference to me
    /Swedish Sara

    ReplyDelete
  31. I have been reading this blog since 2010, but the energy and enthusiasm for what you report has been dwindling, as if I'm reading the same old, repeated ideas. The blog feels out of date and empty.

    You need a new approach. Maybe do short tweets.

    ReplyDelete
  32. As others have already said, I think it would be a shame to see this blog disappear, or drastically change format. Yes, it has drifted a bit from the original mission statement. But the change has been for the better, I think.

    In doing so, it has transformed into something that actual people with MS can relate to. In many ways it has become the interface where the patient meets the researcher. It allows us to communicate with you in a way that really wouldn't be possible via any other medium. That unique characteristic is why I believe you were singled out as one of the top MS Blogs of 2015 - other people see value in the service this blog provides to the community. You've provided hope to many of us, the world over, for years now. Don't let that go.

    ReplyDelete
  33. PLEASE do not stop the blog! I read it everyday. It has been an incredible source of information. In fact several of the MS sites and FACEBOOK pages cite your blog with information. You are not only benefitting man but mankind. Do not let the naysayers drive your decision.

    ReplyDelete
  34. If this is my last chance to post on this blog then I'd like to say Thank You for years of providing me with an insight in the good, and not so good, research that is going on to : understand the causes of MS and its effects, develop new DMTs and symptom-relieving medications, understand the nervous and immune systems.

    The blog helps me identify the questions I want to ask my own neurologist.

    I hope this isn't the end...




    ReplyDelete
  35. I'm sorry to say it so harshly, but unless you have lesions in your brain in the parts that control emotional responses, it is appropriate: Stop throwing your toys out of the pram / making a scene / being a diva / declaring you're leaving and slamming the door - then snuffling around to see if you're missed. This is how emotional bullies behave. Say what you mean and mean what you say. Make your mind up, one way or the other.

    On a totally unemotive note - I do think this blog is mostly very valuable. But you need to conduct yourself more professionally on it, and if that means just not posting comments from whoever you consider a troll, so be it.

    ReplyDelete
    Replies
    1. You might consider getting rid of the mouse doctors because they are highly unprofessional in their comments. But I agree with the above, stop pussy footing and make a decision.

      Delete
    2. No way! The mouse docs are the best! Grammer and spelling might not be the best, or perhaps it's auto correct gone crazy, but these bloggers rock! They're honest and informative.

      Delete
    3. Why get rid of MD?!

      If he is who most updated blog and transforms Science technicalities into something palatable to all, besides their sense of humor that is just right and it isn't debauched with our condition, wich is appreciated since we are talking about a disease, and a complex disease that we face reality is quite unpleasant.
      If he's more technical there are people who complain, if he's good-humored are people who don't like.
      So "you can't please the Greeks and Trojans"...

      In short: MD has to go and exactly the way he is!

      Delete
    4. This blog is a must for anyone with MS. I agree with the posts and comments being more professional. Some of the comments border on being offensive; I would suggest selecting very carefully the comments you let through. MD1 & MD2 seem to enjoy the banter with these people, which can be distracting.

      I think a good proof reader would improve the posts as well; the English and grammar is not what you would expect from a professional site.

      Delete
    5. Sorry, but I actually think ridicule is a tool that we should all use to help demonstrate the viability of an idea. I think the MDs actually use this very effectively when needed in the 'banter'. And mostly their comments add some humour that certainly helps get a point across. I say keep! I can also deal with the bad English if it's the price to pay for having the blog - I have a greater interest in the information contained than worrying about a missed 'd' from the word 'and'!

      Delete
  36. I have a great neuro, but I only see him every 6 months for 45 mins. My GP is excellent, but knows little about MS. When I saw that your blog was suspended then closed, I felt alone. Your blog was (is) incredibly comforting and inspiring. What I really love is the truthfulness in all your opinions, from humour to compassion. What I don't like are some of the shocking comments made by readers, thankfully there are only a few. I don't think the blog needs to be a democracy, so those comments should be shutdown. If the blog wasn't needed then it would not have the huge following it does. Love you all!

    ReplyDelete
  37. I recently drifted across a paper entitled “What our patients are reading online”. It was targeted at a different speciality, but I read it with a smile as I did lament back to some of the information that I read through terrified eyes prior to diagnosis…. Patient stories and experiences presented as research; under-powered studies presented as MS cures; and non-parametric heavily confounded epidemiological data which I interpreted as my destiny. To my eternal reassurance at the time, somewhere down the Google hits there was normally a link to this blog which presented a somewhat more rationed discussion around whatever I had typed into my Google bar. Over time I stopped Googling and just came straight here.

    I don’t believe that this blog is pharma fuelled hyperbole. In my eyes; Prof. G is a clinical academic, he was a medic before he was researcher, and in my experience clinical academics dedicate their time to research because in their opinion it is the best way to improve patient care. They do not do research to line their pockets. I accept that commercial research is not perfect; but I accept that funding for charity grants is limited and without pharma funding, studies would be underpowered and nothing would ever get a licence. The team presents data in an honest and balanced way, I trust their opinion because I know it has originated from one of the largest Teaching Hospitals in the UK, I know helping patients is there priority…. For me it has empowered me to have informed discussions with my clinical team about my treatment.

    The comments on the blog are often negative and that is a shame. I appreciate that one of the purposes of the blog was good quality PPI, and this is probably not always forthcoming. As readers we know research is about joining the debate and we would love to, but for the majority of us we are just patients. We are not brave or informed enough dip our head above the parapet. We don’t join the debate, but we are delighted to be educated with information we could not possibly assimilate ourselves.

    I think the Blog meets its mission statement, we have been really privileged to have it… I think it an amazing resource for patients and patient’s families, I would be saddened if it was dumbed down as there are some patients who want something more informative than the MS society.

    Do you need to post multiple posts a week to keep us reading – probably not – this must be hugely time consuming.

    Is there a better way to generate comment and discussion amongst the readers - probably? Maybe an occasional a focus group/journal club type setting?

    Id of thought several of us would be happy to help with a format redesign if needed/wanted.

    Apologies for the polemic.

    ReplyDelete
  38. First, I would like to thank you for all the time you have put into this blog. I read it virtually every day, and am much more informed when I speak with my doctor because of it. I am very grateful to you for all of your work.

    I think the frustrations from some of the posters here come from a few things-- First, they want an immediate answer\cure now and when they don't get it, their first reaction is to lash out (like my kids who throw a tantrum when I tell them something they don't want to hear.) To your credit, you don't try to sugar-coat the results to placate them. This is not a problem with the blog (as they try to suggest), but good science. A possible solution is to get rid of "Anonymous" as an posting option (as the Anon above also suggested), so you can really see who is posting and get a sense of each person after a while.

    Also, you may consider not posting every single day if there is no newsworthy items. First, to respect your time. Second, some of the very technical posts, as well as "here is another study that confirms what all the other similar studies already showed," while interesting, don't seem to be as valuable to the readers when looking at the comments/lack of comments. Perhaps when you evaluate where the blog needs to go you could consider skewing the blog posts towards very newsworthy items, breakthroughs, researchspeak and clinicspeak, etc. instead of the need to have 2-3 blog posts every day?

    Please don't consider any of this as complaints, that is not my intention. I really have no complaints at all of your blog, but really appreciate your time and all the information you have given me and others. I wish you well in your research and decisions regarding the blog, and really hope you decide to keep the blog alive. Also, I had the opportunity to get personally slammed by, and debate Dr. Dre a year or so ago on your blog. Where else could that happen? :)

    ReplyDelete
  39. I don't still any mojo has been lost here. However, I could still send you the mentioned "healthy dose of butt kicking" if that could help keeping your blog up (... kidding).

    As everyone, I found every piece of information you guys write very valuable. The same for the comments. The highlighted technical aspect is what make me read and enjoy this blog.
    If you need anything from us, feel free to ask.
    Many people here would be glad to help, by giving some time (could be me) or knowledge (could not be me) or anything needed to keep this place opened. You speak about spreading the word: that we can do.

    Please, please, don't stop.

    ReplyDelete
  40. This blog is really needed, this is a unique source of information on science of MS. Have you considered decreasing frequency of the posts?

    ReplyDelete
  41. I say keep it open. I have MS and only recently found this resource. It doesn't sugar coat and does inform the community. The time involved to keep it open, real and honest, I understand the work involved and the challenges. As I come from marketing, I also understand that if "Funder's" don't want certain views posted, they will withdraw their funding. No corporation, or charity, wants bad press. No profit in it and it may not be "appreciated" or in synch with their mandate. I sense that is possibly the cause of the closure and/or rework.

    So what needs to be done to keep it open honest and running?

    ReplyDelete
  42. This blog means a lot to me as a PwMS. But I'll talk instead as someone who has had blogs, radio shows, and other enthusiadms. When I walk away, it's utimately because I have done what I came to do. There's no shame in saying you've met your goal--and I think in a lot of ways you have--and more.

    That said, you have a fantastic platform and audience to do anything you want now. That's pretty exciting. Maybe you could sell weight loss products and become fabulously rich (I kid--but you totally could).

    For all of us, I do hope you find or refine a vision that inspires you (and hopefully keeps us from falling prey to bad science in the future.) I am eager to see what comes next from or because of you all.

    ReplyDelete
  43. I echo most of the comments already here. From the day I found it this has been my only every day must read. It is the most informative, balanced and timely resource for the broad community of patients and clinicians; I was truly disturbed by the suspended then closed signs.
    Self evaluation is always worthy; as an audience member I believe you not only fulfill your aims but are far and away the best resource available. Having said that, the amount of work is enormous, and whilst appreciated I can imagine is unsustainable. Anything that would allow you to continue a version of the blog would be welcome

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  44. Please keep the blog going. It is a resource I value.

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  45. This blog is really important to me as it gives so much information about research from around the world. It gives an insight as to how you see us. It's too late for me to benefit from DMTs. As you probably know, every time a news scoop appears in the Daily Mail we are inundated with well meaning family and friends giving us the news. Your blog keeps us well informed. I don't agree with everything you post, but that is as important to me as posts I agree with.

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  46. As as person with MS living in Australia I find this blog an extremely valuable source of medical information which cannot easily be found any other way

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  47. I've been reading regularly for quite a while, and felt an extraordinary sense of loss when you said you were shutting down. There are many MS blogs out there, but yours is head and shoulders above the rest (apart from Wheelchair Kamikazi - a league of his own), in keeping us up to date with research, discussing a wide range of the issues people with MS face, and in being willing to wrestle with complex policy. It is valuable, and I hope you will continue.

    ReplyDelete
  48. Thank you for this blog, on a personal level it has given me support, lots of information and be better able to deal with my neurology team. On a wider level I do feel that it is raising the level of debate about monitoring, when to treat etc. You may feel that is mostly done at all of those endless conferences talking to neuros but it is here the PwMS can learn what is developing.
    I am not sure that you are still true to your original mission statement but maybe what has developed is a far better thing. I read all of the research blogs and find them interesting even if my scientific medical knowledge is rather out of date. There are some days when so many papers are reviewed that I worry for you and the amount of time it takes but I am sure that there are MS 'professionals' out there reading you summaries as well.
    I think you are honest in your reports and tend to give both sides of an issue and that openess is welcome. I find the non committal attitude of my neurologist infuriating. We all know that there are just about no certainties in MS but that should not stop them discussing things with a patient. Your clinic speak articles are so helpful to put things in perspective, the article on 'benign' MS helped enormously as 15 years in with new symptoms every few months and EDDS 4.5 (thank you calculator) I do not feel it is that benign and can stop feeling that I don't really have proper MS and shouldn't be taking up people's time.
    Losing this clinical and informative aspect of the blog would be such a huge loss to PwMS as I want to know what clinicians are thinking and to hear honest debates (eg. sledgehammer to crack a nut).
    Maybe it could be a weekly, or even monthly blog highlighting a couple of significant research papers, a clinic speak article, a blog or survey on a specific symptom (eg. spasm, swallowing, stigma, value of physio etc) and any clinical advice updates eg. EDDS, PML, Tecfidera WBC monitoring.
    Please keep publishing the presentations, I like to know what clinicians are hearing and debating and I like that openness.
    You are all spending so much time on this blog and I can understand that it needs to be reviewed and probably scaled down and that you all need a bit of you life back but please do keep something going.
    Thank you and do look after yourselves as well as your patients and meeces.

    ReplyDelete
  49. I don't have MS and have no close relations who do but yet I still come here everyday as this is an exemplar on how Science should communicate with the population at large. It does not gloss the subjects and it does not treat its readers at idiots. It shows that science/life is not simple, and that there are no easy solutions.

    ReplyDelete
  50. Everything I know about MS has originated from this blog. It's helped me make life changing decisions about my life (for the better). It doesn't pull punches and it's not for the faint hearted but it's honest and without it I'll just be reading about baking cakes to combat MS.. If you do decide to call it a day then I thank you for supplying me with enough information about my condition to go forward but I hope you stay

    ReplyDelete
  51. There are some other values here that come to mind.

    Many responses are related to the research information and dissemination thereof.

    There is more than this at this blog. Most of us would for example never know about cladribine, we'd not know that fellow human beings in say India have no access to therapies.

    Thats just a few examples of the activism that is unleashed here.

    Solutions to big problems require guidance and a platform.

    As I noted previously I can understand a bigger picture as I deal with a similar bigger picture. All of you at Barts have lives exterior of your professional life and none of us know the constraints placed upon that. I can only imagine knowing what I know in our work. Clearly I'd estimate your day(s) do not end when the time click goes "ding".

    The question comes to mind in a what does the Barts Team need from us, the readers to continue to keep the venue alive?

    ReplyDelete
  52. Everything I know about MS has originated from this blog. It's helped me make life changing decisions about my life (for the better). It doesn't pull punches and it's not for the faint hearted but it's honest and without it I'll just be reading about baking cakes to combat MS.. If you do decide to call it a day then I thank you for supplying me with enough information about my condition to go forward but I hope you stay

    ReplyDelete
  53. I agree with so many comments in here. I purpose a new look into the mission, to include in its first phrase what you have written in the main picture:

    A blog for people affected by multiple sclerosis
    "Interpreting good, bad and other research news"

    With almost 13 years past my MS diagnosis I must confess that I read less and less about the disease everyday. It became clear that when the cup is full, and in this case MS occupies so much space in our lifes, I had to make a real cut in what I read. So my choices on the last couple years are Barts' blog and MS News Today. The latter helps me to check a resume of the lattest news about MS, but it is Barts' blog that helps me understand what I need to understand. That gives me peace, to me and my carers. Peace means more quality of life, more happiness, in the end more health.

    Please do keep up what you do, in your language, normal language, sometimes funny (bless you!!!) that us, the normal people, understand. There is so much gratitude in us even if there are hatters that try to destroy. It takes a lot of courage to explain science. You have to became fragile, welcome the errors of interpretation, welcome some space for the uncertain. Everyone wants to be sure of everything, and MS is just the opposite. We are not scientists or doctors, but we are the ones with MS! There is no price to this blog. And the funders of the research need appreciation for sure, they enable new discoveries, but without patients and families we would not have this conversation in the first place.

    If there was a place to vote on how the mission should start, I would vote on the main focus

    A blog for people affected by multiple sclerosis
    "Interpreting good, bad and other research news"

    Thank you for your courage. MS patients and families need courageous doctors and researchers. Bart's team has that grit. Thank you.

    Actual Mission
    "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."

    ReplyDelete
  54. I read this blog everyday. As a person with MS, it gives me so much information that my neuro doesn't have time for.

    ReplyDelete
  55. I have had MS for 30 years and have been on Tysabri for 31 months. Discovering this blog gave me the information I needed to decide between the various DMT options. It continues to provide me with the information to have a meaningful discussion with my neurologist at my annual review. It gives me hope and encouragement In the future. Please continue.

    ReplyDelete
  56. I love the information from the blogs...more so than the blogs coming from the USA.
    Please, keep this one going. PwMS and their loved ones from around the world recognize the information they get from here.

    ReplyDelete
  57. Team G, your diva-like tantrum of suspending the blog has now proven to be shamelessly egotistical.

    You fellas did this to court sympathy and neediness, didn't you? 'Oh, don't go, we need you,' and all that.

    Do what you feel like doing, just don't blackmail your readers. It's not like you've eradicated MS or figured it out.

    ReplyDelete
    Replies
    1. Not really reasons are too complex to discuss on the blog.

      Delete

    2. Anonymous Wednesday, May 18, 2016 12:03:00 pm
      Team G, your diva-like tantrum of suspending the blog has now proven to be shamelessly egotistical.

      You fellas did this to court sympathy and neediness, didn't you? 'Oh, don't go, we need you,' and all that.

      Do what you feel like doing, just don't blackmail your readers. It's not like you've eradicated MS or figured it out.

      -----------------------

      What a ridiculously callous statement.

      Cynthia brought various events to my attention. I have reviewed several of the threads along the recent timeline and several threads ranging back in time. In respect to recent timeline the term circus comes to mind which I am certain is not what end points of this resource have in mind.

      My head tends to be buried in program code towards forward movement versus frolicking about along with the brain farts of operations.

      I am fully aware of the strategic values of this resource within the global multiple sclerosis community. As a software / web professional I am also fully aware of the dangers that can occur within the trapeze in the big internet tent of interactive venues. When information becomes entertainment and entertainment becomes information the result is often unsophisticated, detrimental and can well be catastrophic to a few or many.

      I have properly counseled accordingly the little social butterfly here. Her multiple sclerosis is owned, not gifted and we had a long discussion towards said aspects.

      Conceptually the value of this resource has considerably larger bandwidth than readers I'd bet are aware of in many respects.

      I am open to confidential constructive dialog should you wish engage me directly.

      Rick
      menmew2@gmx.com

      Delete
  58. My heart sank when you suspended and closed this blog. I have progressive MS with EDSS of about 6.5 and I read this blog every day. I want to know about developments as they occur, read the comments about what people think and just be informed. It makes me feel empowered and able to do something to help myself. There is nothing else like this blog. i appreciate that it involves a lot of hard work to keep it going, but know that it is incredibly valuable to the readers. Thank you anyway for everything you have done to date.

    ReplyDelete
  59. I love the blog in its present form. It is excellent as is. Any tweaks should be minor, IMO.

    As a MS caregiver the information presented here as benefited my loved ones with MS and therefore my life, also.

    You present a great deal knowledge that I would miss without you. For example, you discussed the fact that although Tysabri was deemed a failure in SPMS that it did demonstrate a benefit in upper limb function. Frankly, extremely important points like that are easily missed by people like me, and likely by others, also.

    I first read about the Swedish study indicating PML occurred more in lower weight individuals than higher weight... a finding which lead to decreasing the concentration of Tysabri by extending time between doses as a possible method to decrease PML risk.

    So far, in over 1,000 patient years there have been no cases of PML in 894 people extending time between doses but sadly there have been 4 cases of PML in the 1,000 in the study who remained on standard 4 week dosing.

    My point is that your article mentioning the Swedish study prompted my interest and my wife did elect to extend time between doses and has fared very, well. It is quite possible doing so may have prevented catastrophe because at one point she had taken more consecutive doses of natalizumab than anyone in the world. And many more in trials, I might add.

    Bottom line... the information we get here is great in present form, and irreplaceable. And, it is information and perspective which is having a very real, practical benefit to people battling a frightening disease. What better way, what more noble calling, than to invest you life to help those who cannot do for themselves what yo do? Presenting information and perspective as you have been doing is essential to our lives and well-being; whether you recognize that fact, or not, I'm not certain.

    If you chose not to continue please know that you have improved my life and the lives of my loved ones and for that I am eternally grateful. And there is no hyperbole in saying that.

    ReplyDelete
  60. I'm one of the lucky ones, the naturally research-oriented and tenacious ones - I worked to get a diagnosis and get myself in front of a forward-thinking neurologist early on. Even so, given his limited availability, this blog has been my de facto neurologist at times.

    Having access to the latest information, from a trusted source, has proven invaluable to me, to my treatment, and to my future. The MS community, where ignorance is rife - even among some of the medical professionals - would be a far more frightening place without it.

    ReplyDelete
  61. I could repeat what so many people have said above about the importance of this blog to me as to so many people with MS, the knowledge it gives us and the empowerment that this knowledge brings. But I think I would rather make a speech (with apologies to J.R.R. Tolkien and Peter Jackson)

    Hold your ground! Hold your ground!
    Doctors of Barts, of the Royal London, my brothers,
    I see in your eyes the same fear that would take the heart of me.

    A day may come when the courage of men fails,
    when we forsake our patients
    and forget the Hippocratic oath,
    but it is not this day.

    An hour of politicians and shattered dreams,
    when the NHS comes crashing down,
    but it is not this day!

    This day we fight!!
    By all that you hold dear on this good Earth,
    I bid you stand, Doctors of the East!

    ReplyDelete
  62. I am a long time and regular reader of this blog.
    And I would be very upset if it closes down.

    I for one have the ability to read papers in full (I guess most ppl here haven't) but prefer to read here with a competent view on the topic.

    It's a good central point or anchor for people and you don't have to run around the internet to get your information. I also like how all the "alternative" stuff is debunked! Becuase there is lots of stupid stuff out there which, in an extreme case, could kill people!

    What is the most important point for you to think that you may have to close this blog?

    ReplyDelete
  63. The blog is needed!
    It provided information on many aspects of MS that was read by people all round the world who have MS.
    It also provided information from a source acceptable to a lot of the professionals dealing with people who have MS.
    Please restart.

    ReplyDelete
  64. As a PwMS, let me add to the chorus of voices pleading, please don’t discontinue this blog. I, too, read it daily and find it to be an invaluable, trustworthy source of information about MS. I appreciate that maintaining the blog may represent an overwhelming commitment from you. Please let us know how we can support you, and that includes financial support. Thank you for all your years of service to the MS community.

    ReplyDelete
  65. This blog has been the most important resource on MS-related matters since my first attack almost two years ago. Its robust advocacy for treating early and parsing of research helped me to decide on a course of treatment, and as a source of expert, reasoned opinion on MS it's been an anchor in my attempts to understand and navigate the disease. As far as I'm aware, there's nothing that matches it online.

    I appreciate all facets of its content, but in particular the research updates, clinical advice and education posts. I have also enjoyed the political speak, and appreciate the frank tone of voice, and although some might argue that this drifts somewhat from your original purpose, I have always found it relevant to living with MS and thought-provoking.

    I appreciate the blog must be very time-consuming, and if this is my last opportunity, I would like to thank you for all the effort and passion you put into it and your work on MS more widely. Like other people, I'd be more than willing to volunteer my time to help with site administration or editing (I'm a professional sub-editor) if it meant the blog could be maintained, even if in streamlined form. Above all, it's your fierce commitment to pushing forward with the understanding and treatment of MS, and sense of humour with that, that I appreciate, and I sincerely hope we don't lose a public outlet for that for good.

    ReplyDelete
  66. Please don't close the blog. It was where I was pointed by the MS Trust when I first got a CIS diagnosis with an 80% chance of relapse in the future. It was this blog that made me realise I really didn't want to sit and wait to see what happened. And that I wanted to be treated by a team that considered induction methods equally as a first line rather than discounting as too risky. I feel like I have far more of a grasp of the issues including about DMTs as a result of reading your posts.

    Having said that, I realise I may well be part of one of the reasons why you may be considering closure as I got myself referred to Bart's. And I guess you must be attracting many other patients from further afield as a result so I dread to think what your patient numbers are like. But I'm hugely grateful to be under the care of people who believe in regular monitoring (and possibly outing myself) having received news of a 'no change' MRI today.

    ReplyDelete
  67. Your responsibility to your readers is to provide the most accurate information you can. What they do with that information is their responsibility. If they pursue a 'risky' treatment because of what they've read on this blog, then that rests with them. Patients need to take responsibility for their treatment - read from a variety of information sources and consult specialists who have relevant knowledge.

    ReplyDelete
  68. Maybe all the EAE mice revolted, commandeered the lab, taken over the blog and are holding MD and MD2 hostage. They have not been heard from. Something smells rotten in the state of Bart's.

    ReplyDelete
  69. I don't know if I have the words to convey just how important this blog has been to me and thousands of others impacted by MS. I've often referenced it in my own blog, and the knowledge I've gained from reading your posts has been precious, invaluable in an extraordinary way.

    I find myself deeply saddened and troubled by your decision to suspend operations, as amidst a sea of hyperbole and overcharged opinion passed along as fact, these pages are an island of rationality, a bastion of scientific levelheadedness in an online sphere that often veers towards propaganda.

    As for the "trolls", unfortunately they are a part of life in the online universe. I've never understood how patients can become so emotionally wedded to any particular MS treatment modality or theory of the disease, to the point where people are painted as either "pro" or "anti-" some treatment or idea. I suppose it's just human nature, but the folly of such thinking only results in deep disappointment for some patients, and misguided treatment approaches for many. I would urge you to not take these hyper- partisan attacks personally, they do nothing to diminish the work you do, and in fact only diminish the people who launch these attacks.

    Take time off if you feel it necessary, but please know that your blog fills the vacuum and holds a very special place in the online Internet biosphere. While I don't always agree with your conclusions, I never dismiss them, and your adherence to strict scientific methodology even while expressing your own opinions has informed my own approach to taking apart research that often seems designed to befuddle rather than enlighten.

    I entreat you to please keep this beacon lit, as its light does indeed burn bright.

    ReplyDelete
  70. Information is power and value. Censorship of information is used in some countries to control the population. Your contribution to MS information and discussion is valuable for many people with MS. Your information, comments and discussions gives a broader picture to MS people of their situation, helps them to take more informative choices and ask better questions. Help them to better understand their situation instead of just feeling helpless and unsecure. Please continue with your information, comments and discussions.

    ReplyDelete
  71. In the five years that I have been reading the blog my understanding of my MS and its treatment have been transformed. I now see a different neurologist with whom I can have informed discussions about DMTs, monitoring, MRIs etc. I have taken ideas from ClinicSpeak posts to my GP and changed symptomatic treatments and doses. But, above all, I feel reassured that I am not missing out on any potential treatments that are being developed.

    For the couple of days that I thought the blog had come to an end, I felt completely bereft and had a real fear for the future without this amazing resource. Thank you to everyone for all the work that makes the blog happen.

    My only suggestions for change would be more Case Studies and don't be afraid of denying a voice to the attention seekers whose only argument is "You're wrong!".

    ReplyDelete
  72. I feel this blog has been a valuable source of information.
    Many thanks for your hard work, hope you find a way to keep going.
    Best wishes to all :-)

    ReplyDelete
    Replies
    1. Thanks for your (and all above) comments. We're having a meeting on Monday to discuss the future format.

      Delete
  73. I agree with all the patients who read this blog who have said that it is invaluable. It is widely read because it is such a unique source of information for MS patients. I remember reading Howard Weiner's Curing MS book when my twin was diagnosed and again when I was first diagnosed, and I really appreciated having an opportunity to learn more about the scientists' perspective. It's nice to continue to have that kind of opportunity through this blog. It's invaluable and it helps.

    Because we don't know all the reasons for the closure, which you have indicated are complex and won't be shared here, it's hard to say more than that. It seems the choice is to go back to focusing on the work of St. Bart's -- the original mission -- or rethink how the blog is structured and run since it now covers the world of MS research.

    Continuing with the latter would be a service to research and patients worldwide, but may require more collaborators to work longterm. I'm sure you have colleagues that would be interested in helping -- in Boston, New York, San Francisco, Chicago -- and around the world. A trusted advisory panel of patients might also help ease the load in terms of thinking of clinical topics to address or a Q&Q column, or setting up different categories on the site. I am sure you could even find talented PwMS in London to help handle the website itself or moderate the comments.

    I don't think you need us to write in individually to say how important the blog is. You can tell by the website visitors figures alone that this is an invaluable resource.

    So my only suggestion is to go even bigger -- but realize that to do that you'll need some help! Thank you for all the work you have done already, and good luck with your decisions about the next steps.

    ReplyDelete
  74. "Saddened and troubled "Wheelchair Kamikaze says it all for me

    ReplyDelete
  75. The Blog has been going for over six years. What the Blog has given me is a real sense of the lack of progress made in MS research in that time - shocking given the funding made available and the new technologies which have come on stream.

    Woman across the road from me is EDSS 8 (bedridden). What has this blog done for her? All this brilliant information hasn't helped he one iota. I now know that there's a gravy train of international MS conferences. I know that Cambridge research led to a highly effective relapse therapy (Alemtuzumab). I know that there are no treatments for progressive MS and no treatments to encourage repair (and none are on the horizon). The blog has exposed me to the swathes of useless research that is churned out each year. Lots of activity in MS research (big promises made to get the grants in), but little actual benefit to patients to date. I think the blog certainly helps patients go into their neuros waiting rooms armed with better information that before. But is has also exposed a murky world between research and clinicians - funny combo (like Army Chaplains). In mid-2016, this Blog should be reporting huge advances in MS research and treatments. It's almost scandalous that no major breakthroughs have been made. MD may point to researchers’ work underpinning Tysabri, but the XX hundred who got PML may beg to differ. This blog lost its way when it started posting political pieces about the NHS and the junior doctors strike. People with MS often lose their jobs and spend the rest of their lives on benefits. Issues about the long hours worked by junior doctors aren't high on my list of key issues to worry about. If you decide to continue, it would be best to focus on MS research - giving us your take on the latest published research / treatments. If you decide to ditch the blog, then another will appear. My hope is that better treatments will mean that such blogs are no longer needed i.e. our lives become so normal that we have better things to do. Thanks for your efforts, whatever you decide to do.

    ReplyDelete
  76. Firstly let me say thanks for this blog. I has made a big difference in my life. I was shocked when I saw the blog was closed and felt lost on Monday night when there was no post from NDG at 7pm eastern for the subway ride home.

    I believe that this blog has met its goals but perhaps it is time for you to let go and find a new challenge? I might be way off base but we all perceive from our own point of you. I build software, I lovingly craft it, I test it, I make a change here to shave of a few milliseconds, I add logging there to make it easier to support. Soon it will go live and I will work on something new. However, it is hard to let go of my creation, I know that someone in a low cost support center someday soon is going to do the equivalent of hit my creation with a five pound hammer. That upsets me, perhaps if the Tysabri stops working this will have been my magnum opus but it is still time for me to let go.

    I wonder if you and the team need to let go and focus on new problems. We know that no ownership structure will be as perfect as you and this team, but if a good charter is created it will be good enough. I regularly read a technology blog that has been commercialized in 1998 – people still complain that it is not as good as it was in the old days. Nothing is shiny and new forever.

    I think that there are new challenges that we could focus on. It is so exciting that Harvard MD/MBA students won an award last week for a device to make lung cancer detection cheaper and easier. And Mary Lou Jepsen (Facebook) starting on a wearable MRI project (I think the science might not be there for this idea). But what could we do? We certainly have necessity and that as we know is the mother of all inventions…

    Just my ideas, as I said I might be far off base with my analysis.

    ReplyDelete
  77. While this blog may have done good, i also see harm. Review what your are here for.

    ReplyDelete
  78. MS's a piece of shit, when you look at it...

    Some things in life are bad
    They can really make you mad
    Other things just make you swear and curse.
    When you're chewing on life's gristle
    Don't grumble, give a whistle
    And this'll help things turn out for the best...

    And...always look on the bright side of life...
    Always look on the light side of life...

    MS's a piece of shit
    When you look at it
    Life's a laugh and death's a joke, it's true.
    You'll see it's all a show
    Keep 'em laughing as you go
    Just remember that the last laugh is on you.

    And always look on the bright side of life...
    Always look on the right side of life...
    (Come on guys, cheer up!)
    Always look on the bright side of life...
    Always look on the bright side of life...
    (Worse things happen at sea, you know.)
    Always look on the bright side of life...
    (I mean - what have you got to lose?)
    (You know, you come from nothing - you're going back to nothing.
    What have you lost? Nothing!)
    Always look on the right side of life...

    Best regards, Mladen, Zagreb, Croatia.

    ReplyDelete
  79. Dearest Barts team bloggers
    I love your political analysis and your feisty talk back to the man. The complexities of on line life and the world of global capitalism make hypocrites of us all - the secret I find is not to stop - go on a demo, write a letter, throw a brick (jokes) but do something. Please try to keep going but also be compassionate to yourselves - if you need a breathing space then take it. We'll all be here waiting for the best chuffing thing on the internet if you have MS. With love and gratitude

    ReplyDelete
  80. This is absolutely terrible news. Since the moment I was diagnosed with MS, this blog has been THE single best source of information and hope for me. I doubt I would have moved past the diagnosis as well or pushed for the aggressive treatment path I did without this blog. Due largely to this blog, I feel like I am informed patient in control of my own treatment and future. Please do not give up on this blog and potentially condemn future MSers like me to rely on the snake oil salesmen peddling panaceas, hype, and misinformation on the internet.

    ReplyDelete
  81. I appreciate this blog but am disappointed by its secretive suspensions, closures, mojo posts and insinuations that the secretiveness is due to complexities which are too great to discuss on the blog. It makes me tired, annoyed and suspicious.

    I am saddened by the amount of people (readers, Barts patients etc) who are expressing despair and almost self blame as a result.

    If Barts will make a decision about the future of the blog in the coming weeks, then what is Barts hoping to achieve through this process?

    ReplyDelete
    Replies
    1. All the issues come down to one question; is this blog past its sell-buy date? If yes, how do we relaunch it to make it fresh and relevant without over-burdening the team that have kept it going 24/7 for 5+ years and for it to stay on brief.

      Delete
    2. Thank you. Good luck with the process and thank you for the time given to the blog. There is a chorus of comments above outlining the value of the blog to some of its readers and, judging by the time and the dedication that's gone into this blog to date, they will be taken into consideration. So thanks for your wonderful efforts to date, regardless of any decisions made.

      Delete
    3. The blog is great how it is and not past it's sell buy date. What about having one new post each day only or every other day. No new posts at the weekend. It doesn't need to be 7 days a week. No need to update readers comments during unsociable hours and just do it when available.
      We understand Team G need time off to rest and focus on other things. Thanks for the hard work on the blog Team G.

      Delete
    4. Prof G has a point. It seems that he's feeling the blog has become too routine and needs rejuvenating in inventive ways. Keeping it as it was means that the blog itself has become institutionalised. That is not good and unhelpful.

      Prof G is getting bored of the current incarnation of the blog, and so are some of us, too. It needs a new approach. A fresh take. New blood.

      I suggest a weekly downloadable podcast on the week in MS. We can send in questions and record comments or videos. Different members of Team G can participate. Maybe Dr Dre could be in on it and provide the 'laughs' he promised.

      We need a new take, guys. We owe it to Team G.

      Delete
    5. Please expect email from Rick

      ~Cynthia~

      Delete
    6. Yeah, I think the Blog does not need to come with daily publications, to not overload the Barts team even more. So maybe the publications can be weekly, or at most fetas 2 or 3 times a week.
      I also think that opening a space for the reader, Blog visitor publish 'her vision "on a scientific study of MS that was aired in scientific journals, the media, etc., type" EAE healing of the week ", and there if any of the members of Team Barts find valid publication, interesting, you might as well comment on it giving explanations about it, or do a post on Blog about ...

      Also still think that creating a possibility of open donation to Blog will be valid, similar to what is done in Wikipedia or MS Discovery Forum, up to perhaps be able to contemplate hiring an exclusive administrator for this space...

      Delete
    7. Re: Is this blog passed its sell-buy date.." no, it is valuable resource for people effected by MS. As long as there is research on MS there will be a need for a forum to disseminate information. In my opinion there is a lot of papers published on MS that are not worth the paper they are printed on and don't deserve a comment (unless it is humorous). If the blog is too time consuming then scale back, maybe weekly posts. There are other academic web sites that post the latest research but they do not have dialogue between patients or between researchers and patients. But if posting the blog is becoming a burden on the staff then it isn't fair to continue. The papers will still be published but the interface between patients and academia is lost. I hope you find a format that can fit into your schedule......don't burn yourselves out by trying to be everything for everyone. The blog should be informative but light-hearted. Nothing wrong with a little witty banter, it a good release for people. Laughter is the best medicine. Maybe the team can reformat the blog at the pub where many good ideas are born:-)

      Delete
    8. This blog has not become stale. Thank you for it. It is an invaluable resource. Please understand that for me this site represents hope for a cure or better treatment. Every time I go on, I hope against hope for some good news. To me, it is the only source of information that is useful and honest. We can't rely on the media given the "cures of the week" etc. Please don't go. If there needs a financial solution, I trust your faithful followers will heed the call. Please come back as this site represents hope.

      Delete
  82. I would suggest decrease the frequency of the blog?

    ReplyDelete
  83. I thought you had stopped because you were being sued!!! Please do not cease - the collective plus Prof G provide a very valuable service and I would so miss MD's spectacular wit! I appreciate all the time and effort put in, and the currency of the information you provide. It's just a thought that you might put it out there to be confident that you're meeting the needs of your readers. like most others, I think you are all doing a Superb job and there would be a gaping knowledge space if you ceased😥

    ReplyDelete
  84. The blog is not past its sell-by date. Is there anything to compare it with for other Long Term Conditions? You might be bored with it so how do you get your energy and enthusiasm back. I am quite sure the blog has given you ideas, inspiration and energy.
    That is precisely what it does to lots of other people, myself included.

    Maybe get contributions from other people such as fellow researchers. Maybe even pass control of the blog over to someone else.

    The content and information of the Barts MS Blog is far too important to just throw away because you have lost your ‘mojo’ or could it be described as loss of magic charm, talisman or spell

    ReplyDelete
  85. Whatever you decide,can you please leave the old content up for reference? There's a lot of useful information there, and it would be a shame to lose it forever. Thanks.

    ReplyDelete
    Replies
    1. I agree with this comment.

      Delete
  86. We need a referendum on the blog:

    STAY

    or

    GO

    ReplyDelete
  87. Who knows what a Nelson is? I had to make this comment in response to my cricketing brain; I am also unable to hold my feet off the ground for longer than 2 seconds. MS sucks.

    ReplyDelete
    Replies
    1. The cricketer with MSFriday, May 20, 2016 9:48:00 pm

      Nelson is a piece of cricket slang terminology and superstition.

      The name, applied to team or individual scores of 111 or multiples thereof (known as double nelson, triple nelson, etc.) is thought to refer to Lord Nelson's lost eye, arm and leg; however, notably Nelson actually had both of his legs intact, and the third missing body part is mythical. Longtime cricket historian and scorer, Bill "Bearders" Frindall once referred to it online as "one eye, one arm and one etcetera", implying that Nelson's alleged third lost body part was "something else", however this is equally mythical. In the 1939 film of Goodbye, Mr Chips a schoolboy refers to Nelson in these terms: "One arm, one eye, one destiny". Umpire David Shepherd during a radio interview to mark his retirement explained it as "One arm, one eye and one lump of sugar in his tea."

      It is thought by the superstitious that bad things happen on that score, although an investigation by the magazine The Cricketer in the 1990s found that wickets are no more likely to fall on Nelson and indeed, the score at which most wickets fall is 0 (a duck). It may be considered unlucky because the number resembles a wicket without bails (a batsman is out if the bails are knocked off their wicket).

      Source: Wikipedia

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    2. I think if the score is on 111 (a Nelson), 222 (double Nelson), 333 (triple Nelson), etc. you are meant to keep your feet off the ground until the score moves on. Not doing so is bad luck. I feel for the MSer above who can't hold is feet off the ground for long. I agree MS sucks,

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    3. MS does indeed suck, but this blog is a fantastic resource and a real community. I was recently diagnosed with MS and in the time that I've been reading the blog, I've learned loads and seen how valuable it is. Please do keep doing a blog of some kind, to update us on research, trials and future developments - it really matters.

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  88. I like the current format and I think that it works. Some forms of media are classics, what would happen if someone at the BBC wanted to change the format of desert island discs? However no one works on a show like desert island discs forever. It's ok to want to do something else, to create something else.

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  89. Please ban the nasty anonymous comments. They are so horrible to read and they lower the tone of the discussion. I love the blog but I get so stressed and depressed reading the nasty anonymous comments. Freedom of speech shouldn't extend to hit-and-run nastiness. Please don't feel obliged to approve comments which are abusing you or your colleagues. Some people are bordering on cruel and you shouldn't keep giving them a voice.

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    1. I don't like censorship in any form. If trolls want to make an uneducated and spurious comment so be it. Readers are intelligent enough to know when comments are BS. But if the comments are personal in nature then I would draw the line.

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  90. You guys are still very relevant. Your sell by date = date a cure for MS is finally here

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  91. There is no doubt in my mind that through this blog you have prevented disability and saved lives. People will have challenged their own neurologists about DMD prescribing. People will have given up smoking, started exercising and uped their Vitamin D levels. The blog has literally changed lives. Not many folk can say they've a blog that does that.

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    1. I am not criticizing your sincerity regarding the blog but do patients really need to be told by medical staff to exercise, eat a healthy diet and to stop smoking? All of the posts on these topics are just stating the obvious. A healthy lifestyle can save the public health system billions of dollars and the money can be spent on more deserving projects. I agree that this blog did a good job explaining the various DMDs, both strengths and weaknesses.

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    2. Re: Do patients need to be told to eat healthy?

      Yes they do and be reminded. A family friend has diabetes and he knows not to eat rubbish. But he keeps over indulging and is very sick again. Food is one of life's pleasures and it can be difficult to resist unhealthy food if it's comforting and convenient.

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  92. It seems to me prof. G gives the impression that he has total control over this blog, but can this really be the case? Somewhere in the Barts administration has allowed it to continue for so long and maybe the request for changes/cancelation are coming from above.

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  93. Have you thought about writing a book aimed at the general public about what anybody struggling with chronic disease should know about science, media, business, and politics? I think many MSers have learned, from your blog, how to take a much more critical eye at what we're told about our disease...from charlatans, fund raisers, doctors, government, and even researchers. We get nonsense from all sides. Surely they do too.

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  94. It would be lovely to see more people commenting as real life persona. Eg Cinara in Brazil I'm so happy to hear you are NEDA that's fantastic! I'm not doing so well truth be told but it is what it is and as things are today MS has no cure :-( that's why this blog matters, to keep us informed and hopeful....

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    1. Hi Judy. I'm, for now, NEDA, but don't know for how long.
      I face the reality, I know that Copaxone is "garbage", and how it does not prevent disease progression. If I could estarai using a more effective DMT, at least Teriflunomide (Aubagio) actually what I would like to use would be the Cladribine ...

      Here in Brazil I catch a fight on awareness of MS even among my own "colleagues struggle", which also has the disease. They generally do not know what a lumbar puncture, do not know why the pulse therapy with corticosteroids, have no idea of ​​when the injury appears active, reacts to gadolinium in MRI, and so on ...

      The blog gave me this ability to awareness and knowledge even about my own treatment, like trying to manage it next to my neurologist. For example my neuro agreed not much I reset daily vitamin D3 in 10,400 ui. I said I would do it in agreement or not, just like it would monitor calcium for blood tests. She agreed and she may now have another view of the replacement of D3 as a complementary therapy to DMT.

      I have hope that Judy effective modifying therapies for the MSSP will arise soon, the Ocrelizumabe be released to the MSSP also...

      That health always be with you Judy.

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  95. I could easily write four pages on all the positives this blog has had for me since I found it a couple of years ago, but I shall try and restrain myself. I can say that I could repeat nearly every positive comment that other PwMS have posted here, and they would be true for me. Most significantly, from the many comments above:
    “felt an extraordinary sense of loss when you said you were shutting down”
    “not sure that you are still true to your original mission statement but maybe what has developed is a far better thing”
    “It's helped me make life changing decisions about my life (for the better)”
    “it is Barts' blog that helps me understand what I need to understand”
    “it gives me so much information that my neuro doesn't have time for”
    “My heart sank when you suspended and closed this blog”
    “this blog has been my de facto neurologist at times”

    And most importantly of all: “For the couple of days that I thought the blog had come to an end, I felt completely bereft and had a real fear for the future without this amazing resource”. If it were not for this blog I do not think I would still be here. I live in a first world country with supposedly good medical services, but if I were still on the drug I was originally prescribed I would not even be here today to write this comment. My neurologist has even said that I know far more about MS drugs than he does (not a very good advertisement for him, I suppose, but I do not have choices in relation to who I get to see).

    I post links to Barts articles on other sites elsewhere, invariably receiving plenty of appreciation for doing so – which is not my motivation for doing so, but sharing knowledge is a key part of who I am.

    Yes – you probably have strayed away from your original mission statement, but it has been an organic change for the better. This site is unique amongst all the others out there, and there is NOTHING to take its place if you close down. Your award last year was so well deserved. You fill the gap between pure technobabble and the rosy posy fluffy stuff on the conventional MS society websites.

    You have empowered me hugely, and I would be just one of so many who can say this. In empowering us, you enable us to make our treating clinicians of all specialties accountable for our treatment and its outcomes. You also enable us to make informed decisions when there is so much at stake.

    I too would contribute money or time to keep this site alive. My level of disability may still be slowly worsening, but in so many other ways what I have learnt here has enabled me to significantly improve my quality of life – and after all, isn’t that supposed to be one of the aims of a good clinician? (even though I have never met, and am unlikely to ever meet any of you face to face)

    Prof G notes “All the issues come down to one question; is this blog past its sell-buy date?” Absolutely and definitively, it is NOT past its sell-by date.

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    1. Totally agree, thanks for summarising so many of the other comments

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  96. It easier to read a comment that's only one, two or three short paragraphs. Otherwise they are TLDR (too long didn't read). Does anyone else find this?

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    1. Each to their own. Sometimes I read them, sometimes I don't - it depends on the subject matter and my level of interest in that subject.

      You are quite free to choose to not bother reading long posts or comments if that is your preference, but other people are quite capable of making their own decisions on whether to read or not.

      Is this short enough for your limited attention span?

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    2. It's just right, so thanks for asking.

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    3. Your question has made me think is my limited attention span due to my MS or my dyslexia or both? So I looked on the web and

      Other symptoms of MS include:
      •A short attention span

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  97. A day may come when people diagnosed with MS are immediately given treatment that stops the disease in its tracks and those who have myelin damage are given treatment which will repair the damage and get rid of disability. Then, this blog will be past its sell-by date. But it is not this day.

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    1. Alemtuzumab and autologous HSCT may have achieved the first part. The problem is that damage to the axon happens early in the disease process. Damage to the myelin sheath is repaired to some extent by endogenous means although the myelin layer is reduced. Neuro protection/neuro restoration as well as more robust myelination is needed. Maybe ibudilast and addressing the inhibition in the gliotic scar of chronic lesions will allow for repair.

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    2. Neither lemtrada nor hsct have achieved this if they are not readily accessible to newly diagnosed. In my neck of the woods, neither are readily given to newly diagnosed even though lemtrada is available for newly diagnosed with enhancing or new lesions. Many neuros are not willing to prescribe lemtrada even if patient wants it and understands the risks (and vice versa). They are putting patients on gilenya and telling them they will reconsider changing them when ocrelizumab comes out.

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  98. I think it would be best if the blog is shut down, that way Team G can focus on discovering the cause and cure for MS. If the blog is shut down it will only take about a year to solve the problem of MS (after reading them tell us how smart they are), but Team G is just too distracted.

    So for the good of all ms sufferers, let the geniuses get back to their day jobs /.

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  99. This blog was a huge part of my "chose a DMT" research... I'm a junior doctor and I knew the basics, also getting information was not hard... but with a disease with so many blanks when you read about it..and for some reason I got to live with it the rest of my life... I needed informed opinions about DMTs, and how to improve my lifestyle to protect my brain, that's were i found the most use for this blog. I was able to push for a highly effective DMT moths into my diagnosis without failing 1-2 line and losing neurons in the process. Today im asymptomatic and I thank the Barts team every time im able go out for a run again. I read the blog everyday on my way to work, it would be a shame to lose it, but I can understand it's a hard job to keep it updated. If this is the last time I post on this blog my last words must be... THANK YOU !

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  100. This blog is somewhat tedious now. I like it when you're political. At least that's intellectually riveting.

    More politics, please.

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  101. Hope. I learned the meaning of this word by reading your blog. Don't stop.

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  102. 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.

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  103. 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.

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  104. 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.

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  105. 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


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  106. 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

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  107. Dear Team G

    I 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.

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  108. 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.

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  109. 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 :) :) :)

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  110. Please don't close this blog. It is so helpful and it gives us hope. Can we crowdfund to keep it going?

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  111. 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.

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