Happy Birthday

H

The Barts-MS blog turns 10 today. The first blog post on the 3rd September 2009, on the 2007 Association of British Neurologists’ DMT prescribing guidelines, is now obsolete. The link does not even work. What started as a small experiment has turned into an almost full-time job for us at Barts-MS. Please let us know what the blog means to you and whether or not you want any changes going forward. As always a publication needs to serve its readers.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

39 comments

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  • Great blog – even with occasional trolls slipping through.Its the authoritaitve aspects of the science, the mix of topics, and unpredictability of whats coming next that mean I check in daily, or at least every two days in case I missing something imnportant. So good, I’m checking in from behind the great (Firewall) of China right now, where I am currently working. Beijing yesterday was in lovely cool, autumnal sun, but Nanjing today is bedt of British summer – wet, wet, and more wet. Traveling with MS just takes more effort and organisation, but once you stop you stop.

  • Hi Prof G,

    Props to you and your research team. It’s a fantastic research blog and I continue to learn an awful lot about my condition, armed with evidence-based knowledge. I like the presentation slides you share. My only suggestion would be making the blog easier to search for us citizen scientists. I sense the potential for a lot more crowdsourcing too!

    All the best,

    F

  • Thanks to Prof G and MD for all their efforts (and the other contributors). Particular thanks for taking the time to answer questions raised by posters.

    Ten years has flown by. I wonder how Team G would assess the progress made in MS research over the last ten years? In my view, we are still waiting for the big breakthrough to better understand the disease and come up with really effective treatments. I really got hopeful with the B cell therapies, but was heartbroken when Prof Hauser noted that patients were still moving into the SP stage. I remain disappointed that we are still to see any really effective treatments for neuro protection, remyelination or neuro restoration. Fingers crossed that by 2019 the blog will have been shut down as treatments to stop MS progression and prevent MS will be available (I’m a dreamer).

    • ” I really got hopeful with the B cell therapies, but was heartbroken when Prof Hauser noted that patients were still moving into the SP stage.”

      Yeah..only took 20 years to realize it doesn’t work.

    • The only evidence that patients on B cell therapies transition to SPMS is the following:
      -An offhand remark that Dr. Giovannoni overheard at a conference.
      -A case report on a 53 year old patient, with a 14 year history of MS and EDSS 3.5 at start of rituximab treatment (https://onlinelibrary.wiley.com/doi/full/10.1002/acn3.377).

      I have asked Dr. Hauser’s colleagues at UCSF whether they have seen patients transition to SPMS on rituximab/ocrelizumab, and they have told me that the only instances occurred in patients who already had advanced disease and longstanding disease at baseline. There is *no* evidence that B cell therapies will fail to prevent SPMS, in patients who are not already borderline SPMS at baseline.

      We don’t yet know whether B cell therapies will work to prevent SPMS, but you should not worry about non-existent evidence.

      • Read Hauser’s papers from 2019. “Longitudinally persistent cerebrospinal fluid B cells can resist treatment in multiple sclerosis” and “Silent progression in disease activity–free relapsing multiple sclerosis” He’s not flying the B cell flag anymore..so why are you still..?

        ” Nonetheless, in our recently reported prospective cohort, more than half of patients with relapsing MS accumulated significant new disability by the 10th year of follow‐up. ”
        “Moreover, as relapses and focal white matter lesions are brought under excellent control by disease‐modifying therapies for RRMS, the effectiveness of these agents against silent progression is likely to represent a key determinant of their relative value.”

        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6518998/

        “Our findings raise the possibility that DMTs, which effectively reduce clinical and MRI relapses, may not sufficiently target CNS-compartmentalized immune mechanisms that have been associated with gradual and relapse-independent MS worsening in relapsing MS and progressive forms of the disease (48). Effective targeting of CNS-compartmentalized inflammation may, in the future, achieve efficacy in progression slowing superior to that of current therapies”

        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482992/

        • Yet another gold nugget from Hauser.

          ” We demonstrate complex patterns of clonal B cell persistence in CSF and blood, even in patients on immune-modulating therapy. Our findings support the concept that peripheral B cell activation and CNS-compartmentalized immune mechanisms can in part be therapy resistant.”

          Lesson here is get on Alemtuzumab or HSCT
          otherwise you will fade into progressive disease.

        • The discussion is not about what Hauser thinks (something that I don’t really care about). The discussion is about whether there is evidence that ocrelizumab will fail to prevent SPMS. I am not claiming to know more than we in fact do. More specifically, I am *not* claiming that ocrelizumab will prevent SPMS, merely that there isn’t much relevant evidence yet.

          Let’s look at the evidence you give:
          -The first paper on longitudinally persistent CSF B cells. No patient in this study was treated with rituximab or ocrelizumab, so it’s completely irrelevant for this discussion.

          Incidentally, despite claims to the contrary on this blog, there is not much evidence that oligoclonal bands drive progression. The largest study of this that I know if is from a Swedish national cohort, and finds no relationship between OCB positivity and conversion to SPMS: https://n.neurology.org/content/86/16_Supplement/P1.370.short

          -The second study on silent progression in disease activity free patients. This is also not a study of ocrelizumab or rituximab. 75% of patients were on no treatment or low efficacy treatments, and no analyses specific to ocrelizumab or rituximab were presented. There is no way to draw conclusions about these treatments from the information presented in the study.

          Moral of the story: you actually need to read the details of the studies to see what evidence exists for a claim.

  • It’s my birthday too! Thought it was ambitious for this to be for me though! Alas – It’s a famous date, for much more tragic reasons – it’s the day Britain declared was on Germany in 1939.

    This blog has been my most important coping strategy since I first met a neurologist in 2015. It has provided me with far more information than the NHS or other charity resources. Finding the blog was an important turning point for me, before that I had made the mistake of being sucked into diet schemes that were not evidence based and could have been harmful (mostly to my wallet). The blog was particularly helpful in helping me understand why I didn’t have a diagnosis, and the importance of advocating my position in a professional manner. In the longer term it has helped my relationship with my clinical team, as it as made me realise that my neurologist is conservative but wise and knowledgeable.

    I think the blog is quite perfectly formed and I wouldn’t rush to make changes. I think the changes to the platform helped significantly. I think the blog strikes a good balance currently of clinical and basic research, the introduction and qualitative work into the blog makes it seem more approachable (and makes me feel less like a guinea pig).

    Whilst I appreciate this is not a political platform; I would encourage you to maintain is information output NHS service provision, funding, NICE guidance. Examples were posts around service variance, bluetec and GIRFT. Whilst research is of interest, the impact of your work is dependant on these aspects and much more likely to effect my care than any HSCT study (which always seem to have high readership on here). Being aware of the political climate is important for managing hope and expectation, and potentially a useful tool for self-advocating is circumstances where you feel like you are being over-looked within a stressed system.

    Thanks for keeping going & Happy 10th birthday.

  • This blog is brilliant and I’m so pleased I discovered it. It inspires me and gives me hope. I don’t always understand everything, in fact I often don’t understand anything but that doesn’t matter! I’ve recommended lots of people to your blog and hope they get as much from it as I do. Thank you so much to you all – Neurologists, researchers, contributors and all the rest of you great people for your time and effort.

  • Everything Bopeep so eloquently states in her second paragraph is true for me also. Among other things, without this Blog, I wouldn’t be sitting here having received alemuzumab, nor be swallowing Lipoic Acid, using intermittent fasting, ensuring I exercise, or googling Sels and smoldering ms to ensure I fully understand what they are.

    Like mserjason it is essential, compelling reading that I access daily. As with Jane, I don’t comprehend most of the science, but do recommend it as to others as the best site available. So glad I recommended it to a friend who is an occupational therapist who recommends it to those PwMS she works with.

    I have a friend who has Parkinson’s and works for the Parkinson’s Society, who has looked at the site and expressed jealousy – that’s how lucky we are to have you as a team putting so much work into the most informative and valuable online resource for professionals and PwMS alike. I think it should be required viewing for all neurologists and MS nursing staff.

    Heartfelt Thank You.

  • Happy birthday from down under. You are doing a really really great job. An excellent mix of science, clinical and social, keep it up, I love it.

  • Thank you for everything you do! You have been real innovators in MS patient education – and before there was very much else out there too.

    One question – I wonder whether you will be restarting the ‘Ask Barts-MS’ section, or if there would be a better way to submit a suggestion for a future blog post? Is it possible to suggest a question for consideration?

  • Fantastic website. Access to experts in the field. Have learned much about early aggressive treatment. Always brutally honest. Thank you for your dedication and the many hours spent writing and answering questions.

  • I ‘manage’ my ms alone, this blog is one of my resources for keeping myself engaged and getting through the day. I try to understand the posts about treatments because I hope to be prescribed one at some point though I am not sure what my options will be.

  • I have gained a _lot_of valuable information from this blog, from confirmation that cold viruses are to be avoided and why, to the existence of low-salt Marmite.

    Please keep going and writing about neuroprotectives and the black swan. These are the most important topics.

    Happy Birthday 🎈

  • This blog is essential reading for people with MS as well as other Long Term Conditions. So much honesty as well. Yes this blog/web site does take a lot of effort but darn sure you get good feedback that promotes further discussion and thought. Helps me to understand so much about my condition ad the problems that come with it. Well done, congratulations and keep up the good work

  • Firstly, TEN YEARS?!?!! I feel old! Secondly, this is one of my top MS information resources of all time. What you guys have done is ground breaking and has empowered people affected by MS all over the world. Thank you!!! I constantly refer to the blog when speaking to people from other HCP communities – saying this type of resource is needed in all disease areas. Congratulations all of you – I know how much hard work goes into the blog every single day 👏🏽

        • Happy Birthday from the USA from Britain’s namesake Reading, Pennsylvania.
          I have been studying all aspects of MS daily for the last 8 years towards the latter part of my medical career. ( I love the field of MS and have no retirement plans as long as someone up above keeps me going ). I care for about about 800 MS patients and invert the treatment pyramid. I look forward, daily, to reading your MS blog, and despite the 4 of you being time poor, you all caringly, primarily for your patients, and then, the rest of us, share your MS wisdom with us. Every day I look forward to the daily posts on your blog. I have so much respect and admiration for the 4 of you, that I often find myself quoting you and thinking like you. Perhaps Dr. Giovannoni will remember my brief meeting with him at Actrims in Dallas Texas this past February when I told him how I liked Dr Baker’s esoteric sense of humor.

  • Definitely a guiding light here as I approach decisions that will affect the course of my MS and my life.

    Thanks for welcoming both seasoned experts and real world ms patients in this forum. It’s a unique community in that respect.

    Grateful for a sound place to look for information amidst an overwhelming sea of anecdotal advice and opinions.

    Perhaps the best thing my neurologist has done for my MS was to refer me to your blog.

    Happy birthday from BC Canada!

  • Hi

    All in all, I believe the blog is helpful.

    I have found the blog overall very informative and discovered a few nuggets of “gold” which resonated for me. e.g concerning good lifestyle management and helping me to understand the widely diverse nature of MS – e.g. the article portraying MS as sometimes “smouldering”. Given the diversity of MS and likely causal factors, I expect different MSers would discover other nuggets. I would understand if some don’t find it helpful.

    By way of background, I’m new to the blog. Age, early 70s. Been on ocrelizumab for two years, after diagnosis around 2010, following undiagnosed incident some decades earlier and “interesting” (to me) undiagnosed cognitive conditions since late teens. Initially reluctant to take medications because of the uncertainties of effectiveness and side-effects. When asked if the ocrelizumab is effective I gave the answer appropriate for anyone with a science background – “I can’t tell; I have no control test”. However, while I am really well to all outward appearances apart from a limp, for which I am very thankful, my condition seems to be slowly “progressing”. Apart from shot concentration I now can only walk 1 km daily (before stumbling) compared with 2 km or more daily three years ago.

  • Thank you so much for your time and enthusiasm in providing us all with this Blog. It has informed my decision to be treated with Alemtuzumab very early after diagnosis.

    It also gives me hope that I am not alone. I am extremely lucky to have an excellent ‘dinosaur free’ MS team. However, it brings me hope every day to think that there are researchers with dedication and care, continually advancing knowledge and treatment of MS for my future also.

    Thank you to you all

  • It’s not just that it’s so helpful in itself, but the fact that it saves me looking anywhere else. It fits perfectly into my strategy of putting MS into its box. I read it daily, take forward any issue it throws up, then get on with the day. No fretting, no obsessing.

  • Language cannot express my gratitude for this blog because of the practical differences it has made in caring for my wife. I am not the only person who has spoon fed a spouse and assisted daily bathroom functions during flare-ups for a loved one stricken with MS. All the resolve possible to alleviate suffering would be useless unless there were sources of information that could benefit such resolve. This blog is the leading site for information which has assisted me in caring for my spouse. There is absolutely no question that what I have learned here has translated into managing MS in my household far, far, far better than I could ever have accomplished w/o this blog. For that, I am deeply grateful and a bit humbled, also. Humbled because I know full well, I will never be able to repay your efforts in the measure you all deserve. However, on a lighter note, I do dream of hitting a $900 million mega lottery and making you all millionaires, plus funding your research for the next 20 years, if that helps!

    Thank You, Sincerely
    Rollo

  • I do enjoy reading your posts and information. Much of it is above my pay grade as they say, but please don’t give up. My son was diagnosed with MS 10 years ago, his birthday is 2 September, and we are so grateful that the local neurologist referred him to Professor G’s team. Keep up the good work.

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