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.
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?
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
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 focusA 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."
I read this blog everyday. As a person with MS, it gives me so much information that my neuro doesn't have time for.
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.
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.
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.
Not really reasons are too complex to discuss on the blog.
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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.
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.
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.
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 patientsand 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!
This post made my day 😀
Love it 🙂
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?
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.
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.
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.
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.
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.
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.
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.
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.
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!".
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 🙂
Thanks for your (and all above) comments. We're having a meeting on Monday to discuss the future format.
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.
"Saddened and troubled "Wheelchair Kamikaze says it all for me
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.
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.
While this blog may have done good, i also see harm. Review what your are here for.
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.
Dearest Barts team bloggersI 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
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.
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?
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.
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.
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.
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.
Please expect email from Rick~Cynthia~
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…
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:-)
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.
I would suggest decrease the frequency of the blog?
I agree. Every 10000 years would be good.
Now now
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😥
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
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.
I agree with this comment.
We need a referendum on the blog:STAYorGO
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.
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
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,
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.
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.
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.
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.
You guys are still very relevant. Your sell by date = date a cure for MS is finally here
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.
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.
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.
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.
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.
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….
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.
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.
Totally agree, thanks for summarising so many of the other comments
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?
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?
It's just right, so thanks for asking.
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 andOther symptoms of MS include: •A short attention span
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.
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.
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.
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 /.
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 !