Au revoir

A

Dear Reader

Today is the first anniversary of my near-death experience. What a year? It is good to be alive and appreciative of things I always took for granted; these are mostly simple things. 

I am still having to adjust to my new normal and realise I am unable to do many of the things I used to be able to do. I need to prioritise and focus on fewer things with the aim of hopefully doing them well and seeing them to completion. I have decided to pack away my soapbox and I will therefore not be contributing to The MS-Blog going forward.

Thank you for your support over the last 12 months. 

Prof G 

P.S. Please note that I have no responsibility for this blog or any future content. 

About the author

The MS Bloggger

74 comments

  • Thank you for all the time, energy and zeal spent on educating the masses here. How politics manage ruin everything I do not know, but please keep publishing opiniated pieces wherever you find most suitable.

    • FYI

      Graf J, Leussink VI, Soncin G, Lepka K, Meinl I, Kümpfel T, Meuth SG, Hartung HP, Havla J, Aktas O, Albrecht P. Relapse-independent multiple sclerosis progression under natalizumab. Brain Commun. 2021 Oct 9;3(4):fcab229.

      The objective of this study was to investigate confirmed progression independent of relapse activity in relapsing-remitting multiple sclerosis patients under long-term natalizumab treatment. We performed a retrospective, cross-sectional study of clinical data captured between 1994 and 2019 at two German multiple sclerosis tertiary referral centres. Data files of all relapsing-remitting multiple sclerosis patients treated with natalizumab for ≥24 months were analysed. Confirmed progression independent of relapse activity was defined as ≥12 week confirmed disability progression on a roving Expanded Disability Status Scale reference score by 1 point in patients with an Expanded Disability Status Scale score ≤3 or 0.5 in patients with an Expanded Disability Status Scale score ≥3.5 in the absence of a relapse. Among the 184 patients identified, 44 (24%) developed confirmed progression independent of relapse activity under natalizumab irrespective of the Expanded Disability Status Scale score at natalizumab onset. Time to confirmed progression independent of relapse activity was not affected by Expanded Disability Status Scale at natalizumab onset (categorized by Expanded Disability Status Scale score ≤3.5 versus >3.5) nor by duration of disease nor by duration of therapy. Confirmed progression independent of relapse activity occurred earlier in the disease course in patients with an earlier natalizumab therapy onset with regard to disease duration. A stepwise forward regression analysis revealed disease duration as the main factor for confirmed progression independent of relapse activity development (P = 0.005). Taken together, confirmed progression independent of relapse activity occurs in a substantial proportion of patients on long-term natalizumab treatment and independent of Expanded Disability Status Scale score at natalizumab onset. Our findings suggest that patients who are initiated on natalizumab early during disease course, usually in order to treat an aggressive clinical phenotype, have a higher risk of early confirmed progression independent of relapse activity.

  • Oh no that’s a shame. Will you still do the MS selfie? Your accident was clearly life changing but it’s amazing how well you appeared to have recovered. I can imagine there is still much you contend with day to day though. Take care.

  • I’m very sad to hear this, considering how much i read this blog love to see your posts. But I also completely understand your need to focus on fewer things. Best of luck to you, prof G.

  • While I understand your need to prioritise, I know that I will miss your clinical contributions. The best thing about this blog is the mix of basic science and clinical experience. However, I am sure the Prof K and Neurodoc G will cover the clinical side of things, and we can rely on MD to keep up the science. But still want to say that I for one will miss your clinical insight. Best wishes with whatever you wish to focus on, but it would be great to keep up some cross posting between MS-Selfie and the blog.

  • I would just like to add my voice to no doubt numerous others saying thank you and I will miss your frank, honest, expert and no nonsense posts. I feel I have come to rely on them somewhat so will need to be a bit more proactive in finding my information going forward! Wishing you all the best; you’re a wonderful advocate for pwMS in my view and I for one am eternally grateful. Thank you Prof G, continue to heal well.
    WW

  • Prof G,

    Wise decision. The Blog has lost its way. For me, Covid 19 was the final nail in the coffin – endless posts which had little to do with MS research. I’ve followed the blog since the start and am left frustrated by the slow pace of real breakthrough eg therapies to address ebv and smouldering MS, remyelination therapies, therapies to promote repair. Your post on ‘differently-abled’ highlighted how much more there is still to do to stop people in their prime becoming seriously disabled and losing their hopes and dreams. I wish you well as you focus on fewer things. Your accident gave you an insight into the daily challenges faced by many MSers who aren’t given a second chance. I’m glad you have made a good recovery and wish you all the best for the future. Thank you for the time you invested in this blog. I hope you can convert some of your theories (ebv, smouldering MS) into therapies which will make life so much better for those diagnosed in the future.

  • We’ll all miss your posts I’m sure, but you need to put yourself first now. You have been so helpful to so many. Au revoir and good tidings! May good fortune always find you for the rest of your days!

  • Thanks, thanks so much! You have been an encouragement and an inspiration to think, and one day to get at the truth about MS.

    Wonderful!

    Best wishes for all your future projects.

  • Sorry to read this but understand your reasons; thank you for all you have done to educate and inform us via this blog .

  • I am so sad to hear this but respect your decision. You have taught me more than anyone about my MS than anyone else. Thanks to you i’m now on HRT, i have urine dipsticks to check i’m not coming down with a UTI and last week i got my pneumococcal vaccine. I hope to hear your voice again in some other form xx

  • Dear Prof G,
    Thank you for every post, every wise word and every helpful feedback.
    The Blog won’t be the same without you…
    Wish you all the best, and hope we’ll have a chance to keep reading your newsletter.

  • Best wishes as you move forward. I will miss the regular posts, but understand the need to prioritize. Thank you for everything ❤

  • Dear Prof G the blog and especially your posts have been life changing for me. I’m sure I would have more disability from MS than if I hadn’t been reading your mix if righteous and reason for the last 9 years. Blessings upon your endeavours to focus and be lucky xxx

  • I am so sorry to hear this. You’ve helped me with your posts more than anyone over the years. You are an amazing person. Good luck and best wishes in your continuing recovery.

  • Thanks for all of your time posting on this blog. Your insight and passion will be missed. But nothing is forever so take time to sit back and enjoy life.
    “It’s good to be alive and appreciative of the things I always took for granted..” so true, life is tenuous and fleeting. Have a glass of red for a job well done.

    • Dr. G,
      Your posts and this blog have been a wealth of knowledge. You interdisciplinary and multifunctional posts have been pivotal to my growth as a patient.
      looking backwards, in a couple of decades, we will all be very proud to say “I have controlled and mitigated my MS thanks to the famous MS pioneer, dr. G!”
      Go and take care of yourself and your family. Life is such an amazing experience. We exist for a bleep, so make sure you enjoy this bleeping ride!
      Much appreciated and hope to meet you one day when I’m in the UK.
      Godspeed!

  • Thank you for everything Prof G. It feels like this is the right decision for you. Hopefully we’ll still see the MS-Selfie newsletter which is absolutely fantastic and useful for so many of us!

  • Good luck with your constant process of change, challenge & renew. I have massively enjoyed your articles on smouldering MS. Cheers. David

  • So thankful for all your work, you have made things so much easier to understand. Good to hear that you are prioritising your health.
    Huge thanks multiplied by hundreds

  • You’ve had a huge impact on my wife’s care. More than her neurologist. Very genuine thank you for your efforts on the blog. I hope you continue ti post on other sources.

  • Dear Prof G,
    Your contribution to MS Barts blog has changed my life since being diagnosed with RRMS nearly 3 years ago.
    A massive thank you for all your care.
    You will be missed. But totally understand your decision.
    Look after yourself.

  • Incredibly grateful for all of the knowledge you have passed on over the years. Wishing you nothing but health and happiness.

  • The best of luck in whatever you do. Please keep pushing somehow the smouldering MS and EBV theory so treatments can come along.

  • Sorry to see you go as I enjoy your posts & benefit from them many times. I understand tho, I’ve had to do the same thing due to disabilities from MS. “New normal” sums it up.

  • Thank you for all you have done. You have changed lives, including mine. In the absence of a definitive cure, you have provided insight, education, knowledge and empowered patients to be more than simple dumb consumers of medicine / treatments. Your work with this blob gives us hope that progress is at least being made. I echo Sid’s words, I hope you are able to see the work on EBV and smouldering to its conclusion and finally bring an end to suffering of so many millions of people and their families.

    Thank you for everything.

  • Thank you Gavin for giving so much of your time / yourself to addressing all of our concerns. As a parent, who’s daughter was recently diagnosed , your blogs were our lifeline. Thank you & take care.

    • Am so sorry to hear this, but life changes & things move on, as everyone involved in any way with this blog knows only too well.
      Thank you so very much for your posts – you have been a support, a person to turn to, an education, someone to make you think. Several years ago, you were the only neurologist I could find who had something good to say about alemtuzumab & I’ve stuck with you since then.
      I wish you & your family all the best for a happy & healthy future. Many thanks once again Prof G x

  • This is a huge loss for the blog and overall MS community. I hope you find the peace and mental/emotional balance you are seeking Prof. G and similar to all the comments above (well excluding one), you have had such a profound impact on my life and battle with MS, so THANK YOU! Over the past 12 years, you have persistently advocated for change and were never afraid to ruffle the feathers of the MS establishment.

    I hope this does not also mean “TheMS Blog” days are getting close to an end. I know over the years, this blog has had it fair share of existential crisis and complaints; however, it seems the voice of those with “thin skin” has been getting louder and and louder, which is a dam shame.

    I do hope your decision to step away has not been influenced by the recent attacks on this blog, from whatever happened this week to certain events over the past 18 months.

    https://multiple-sclerosis-research.org/2021/04/an-existential-crisis/

    https://multiple-sclerosis-research.org/2021/05/deed-poll-for-bartsms-blog/

    This is very sad and devastating news and exactly what the trolls and MS establishment want…..to shut you down, so please do not give up the fight! Bad enough MD1 was neutered earlier this year and he no longer entertains us with his late night rants 🙂

  • Completely understand your decision. You have done so much to support educate pwMS and encourage them to believe there will be progress, so thanks for all of your work at Barts MS and on the blog. Time now for you to adjust to your new normal and set the goals you can for yourself. We’ll miss you but I expect your Selfie will continue. Whatever you decide, good luck.

  • You will be surely missed on the blog Prof G. Thank you for your insightful and invaluable contribution over the years. One of the few MS KOL’s that dares to think different and puts PwMS always first. Impressive how you’ve recovered. Keep strong and let me know if I can help on your current and future endeavours.

  • I am very sad for this news because it tells the accident have been very bad. Thank you prof G, your contributions have been always insightful, the education provided here invaluable and it is what helps me in taking decisions I would not be able to do with the information I can access.
    I hope you will still post once in a while even to just say hello. I wish you the best!

  • Professor G,
    I have followed all your stories. Have learned alot about my own MS. Do have further questions, perhaps you or the Team may be able to question.
    I have been put on oxygen, so my days are numbered, I know from reading, but not much information on chronic hypoxia or restrictive lung disease, except common in ms. I feel that I am a study case for the University of California,Davis, Sacramento. USA
    The MS muscles have attacked my lungs is a easy term. like a MS hug that never goes away. Just the opposite of copd. I knew something was wrong, but did not expect this to be added. Or is oxygen THE finality?

    I do hope you get back to this blog, or someone could answer questions.

  • Thank you for all you have written for this blog. It and your posts were a ‘port in a storm’ for me when diagnosed. You must have made a huge difference to many, many people by educating them about their treatment options and how to manage their illness. Forever grateful and sorry you are stopping your contributions. But as someone with MS I understand and agree with the importance of pacing and management of personal resources. All the very best.

  • I can only second all the other messages on here. You have educated and empowered me so much over the last few years with your posts relating to MS and treatments. During Covid when it was so difficult to reach my own team being able to read your posts on here was so incredibly useful and reassuring. Being armed with knowledge it feels like I have regained some control over my MS and this is largely down to the MS (formerly Barts) blog and your posts. I really hope you are able to take some time for yourself and I just wanted to say a heartfelt thank you.

  • Very sad to hear but understandable. I just want you to know how helpful this blog has been to me over the years. Since I was diagnosed about 6 years ago I have learned more by reading this blog than any other source of information. It really has made a difference in so many peoples lives.

  • So sorry to hear this news. Your care and insight on the blog will be deeply missed by me and the MS community. But we as a group understand too well the importance for self care and need to refocus at times. Wishing you all the best.

  • Thank you for all the efforts over the years, and wish you all the best.
    I do hope the blog continues with contributions from MD and Prof K and the others.
    I found the blog soon after diagnosis almost 15 years ago: it was a lifeline and lifesaver.

  • I’ll be selfish – I hope you reconsider! You’ve probably helped thousands and thousands of people through this blog and sadly the clinical/research world and red tape makes the “real work” hard to achieve the same helpfulness. Thanks for everything, hope you are doing okay and the recovery ramps up.

  • Dear ProfG,

    I’m enternally grateful for everything you’ve done – although we’ve never met. Your posts have helped me understand what I need to do to adjust my life to my new normal after the MS diagnosis. I owe you so much and it’s really unfortunate that you have to stop contributing to this blog.

    However, you should also adjust to your new normal and do only what you are able to do without being overwhelmed. Thank you for all the advice, inspiration and out-of-the-box thinking.

    Farewell ProfG!

  • Thank you so much for all your valuable contributions that have made a great difference not only to my own understanding of MS, the DMT I use and related matters, but also to that of a further 7000+ international members of a patient site where we often included your comments. I will miss you in this blog! May all the good energy from the support and inspiration you have been giving to others through this blog come back to you doubly and sustain you in your further path. Wishing you improving health, strength and, always, hope!

  • Thank you for your incondicional service to the MS community. You will be heartfelt missed. MS people have to do this kind of choices almost on a daily basis and it’s never easy taken decisions. I have read you along the years, learned with you, met you actually in person ( 🙂 ) and you are a good influence on the way I face my MS. Thank you. Good luck on your new journey!

  • You fulfilled your PE obligations and then some. Pwms have been lucky to have access to your knowledge, experience and ideas through this blog but nothing lasts forever and sadly you have, understandably, chosen to step away. I hope that up and coming ms neuros have learned from your posts on here and going forward consider your stance on treatment strategies, I certainly would have liked to have been treated by you.
    I am glad you used your last post to raise the issue of the environmental impact of medicine, you don’t shy away from what needs to be said and that is going to be our greatest loss on here. Thank you and best wishes for the future. x

  • Hope you re-consider…… the clinical insight in this blog has been a lifeline for those of us, struggling to get diagnosed, struggling to self-manage the many hidden and poorly understood consequences of the condition. And of course those of us struggling with untreated progressive MS, frustrated by the once a year, “see u in 12 months”,…….. the forgotten many.

  • Very sorry to hear this. We will miss your authoritative clinical expertise but very best wishes for your next moves.

  • Au revoir Prof. I can understand the decision totally but will really miss your blogging. Still, it’s all in there and a wonderful living textbook of all things MS – a great achievement to add to your list.

    Many Many thanks!

    Dr Colin Bannon

  • Every word of every reply is extremely accurate, pertinent and reflective of the unique position you hold within the wider world of MS.

    For myself it has been the fabulous combination of you as neurologist, medical scientist and the health care professional who gets it from the position of a PwMS and in the broadest sense too! You cover absolutely everything and if it weren’t for you I wouldn’t have pursued having treatment with Alem, wouldn’t have a long list of potential side effects on my phone; I wouldn’t have been so on the ball with diet, exercise, urinary tract infections, brain health… I could go on!

    Your capacity to reach out effectively and without that awful devision between HCP and PwMS is second to none! THANK YOU.

    I suspect I’m not the only one who is experiencing a profound sense of loss and with a rather large lump in the throat.

    TAKE VERY GOOD CARE.

  • There ´s a big hole to fill with your departure. Hopefully you will miss us enough to come back now and then to post. Maybe with your rejiggering of priorities you can give us insight on the path of self-care. You are a oner. May your future aches and pains come from laughing too hard and not hold over stuff from the accident. Thanks for providing the info so that I could be a true partner in figuring out my MS care.

  • Thanks for all the valuable MS information. Information that I only got here from the blog and not my neurologists or primary care doctor. I’m wishing you all the best.

  • Thank you so much Prof G. This blog was a godsend when I was first diagnosed years ago at a young age and I was uncertain of the future. As my MS stabilized and I happy with my treatment regimen, I checked the blog infrequently until the time of Covid. But I was able to catch up on so much I missed and I appreciated all the Covid 19 info. I wish you well in all of your endeavors and I hope you have many years of good health and happiness!

  • Thank you very much for all the work carried out in favor of research at MS and aimed at us MSers, Prof G. Also thank you for all the knowledge I share with us in this space. I wish you an excellent recovery, the best health for you and your entire family. We’ll miss you.

  • Thanks for everything you do for the MS community Prof G. I will miss you round these parts but sounds like its for the best for you personally. Cannot thank you enough for everything you’ve taught me on this blog with MD1, you made an MS diagnosis a lot more empowering and less scary!
    Best wishes for you and your family

  • Thank you for your previous insights, they were great and I for one miss you on this blog. But what is this deleting all your historical posts about? Really not a good look. Many of us understand why you need to prioritise what you do, but deleting your old posts is really like taking your bat and ball, stomping off home and having a really big tanty. While you may have good reasons for doing this that none of us know, the only people that it impacts on is pwms. The very people that you say you are trying to help. Seems a bit selfish to me.

    • I’d like to echo your disappointment about the old posts being deleted.

      I absolutely appreciate the service Prof G has given to the MS community over many years and understand the need to prioritise, but I can’t help but feel terribly disappointed in your latest decision. Like so many, I’ve benefited enormously from the information on this blog and the knowledge and insight you have imparted has made the decade since my diagnosis much less scary. I really can’t overstate the impact of this.

      I just feel terribly sad that the next generation of MSers can’t share the same benefits. It’s one thing to take a step back, it’s another to burn the lot.

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