Happy New Year! In response to a comment yesterday I produced the following overview of some of Barts-MS’ activities for 2018. It makes me very proud to be part of the team and I would like to thank them all for all their hard work and perseverance.
I would like to think of 2018 as the year of the #HashTag.
Some of our long-running social media campaigns have started to deliver returns on the time and effort that have gone into them. All of these have been linked to a particular #HashTag.
In short Barts-MS’ 2018 activities can be classified into five categories which are research, services, policy, education and PPI (patient-public involvement).
1. Research
#ThinkHand – We continued to make a strong case for our #ThinkHand campaign with numerous research outputs. These are all being used to support further work in this area. I am the principal investigator for ORATORIO-HAND a phase-3b study of ocrelizumab in PPMS that will include patients with an EDSS of up to 8.0. The primary outcome is the 9-HPT. In parallel, DrK has been working hard to get an NIHR funded trial off the ground called CHARIOT-MS. DrK has shepherded the grant through round 1 and is waiting to hear whether or not the study will get funded. CHARIOT-MS is a study of oral cladribine in advanced MS targeting both SPMS and PPMS with the primary outcome being the 9HPT. If there is one person in our group who deserves an award for resilience and perseverance it is DrK; he has doggedly stuck to the task. There will be much celebration at Barts-MS if he gets his just rewards for all his hard work over the last few years. More importantly, CHARIOT-MS will become a beacon of hope for people with advanced MS.
#SelfMonitoring – Nicholas Dubuisson completed a herculean meta-analysis to analyse inclusion criteria used for progressive MS trials. In summary, it shows what a mess the field is in when it comes to identifying who is worsening or progressing prior to being recruited into progressive clinical trials. We have used this meta-analysis to make the case for using self-monitoring to document worsening in the 12-24 month prior to trial recruitment. In response to this, we have been gradually building our suite of online web apps to empower and activate the MS community to do just this.
#under&over – Alison our design researcher developed a hand and upper limb rehabilitation tool called under&over, which was launched at ECTRIMS2018 in Berlin. Alison has been successful in getting a grant to test whether or not under&over will work as a remote rehab tool.
#ThinkCognition – I have been pushing the concept of MS being a preventable dementia for several years and that by focusing on cognition early on in the course of the disease we would get the MS community to adopt the early-effective treatment paradigm. One hypothesis that I proposed several years ago came to fruition this year; i.e. that pwMS who are able to learn on a cognitive test do better than poor-learners. This analysis was done with Maria-Pia Sormani using the combined FREEDOMS fingolimod data set.
#ThinkSocial – You will notice some early activity from our group on social capital as a potential predictor of outcomes in pwMS. We have been very fortunate to have Saul Reyes a Colombian neurologist join us an ECTRIMS fellow for one year. Saul will be studying social capital in MS. The other excellent news is that the Horne Family Foundation has awarded us a grant to study whether or not our PPI programme increases social capital and if it does will this increase the quality of life of pwMS and reduced healthcare utilization. Ultimately, we want to be able to do long-term studies to assess whether or not increasing social capital improves outcomes for pwMS. An interesting point worth noting is that the UK government has just appointed a loneliness minister to address social isolation at a population level. I interpret this as a sign that our #ThinkSocial campaign is of the moment.
#PreventMS – The MouseDoctor and I left Queen Square to move to Barts and The London School of Medicine and Dentistry (Queen Mary University of London) in 2006. One of the main drivers for me personally was to shift my long-term research focus on MS prevention. This year saw the activation of a priming grant to set-up a Preventive Neurology Unit that includes a group working on MS. We were able to get Dr Ruth Dobson back to QMUL to lead the MS Prevention programme. We have a lot of activities planned under this banner for 2019 and beyond. We will keep you posted on developments in this space, but you can get the gist of things to come from our recent blog posts on ‘proving EBV is the cause of MS’ and ‘Why do I have MS?.. Because you have a common virus?’.
#CharcotProject – We finally got publish the results of INSPIRE trial and our #CrowdaCure EBV saliva shedding project. The saliva data has been instrumental for powering our FamV study, which we hope to start in the next few months. Please note the contrary to some commentators the #CharcotProject is alive and kicking.
2. Services
#OffLabel – We published our own experience with using off-label subcutaneous cladribine in MS and provided anecdotal evidence, using case studies, that it will work in people with more advanced MS. The latter has been vital in supporting our CHARIOT-MS grant application. Whether or not these publications will get other centres in the UK and other countries to follow our lead is a moot point. Interestingly, we have had a few centres requesting our off-label protocol so there may be the gradual rumblings of an off-label movement starting.
#AtraumaticLP – We continue to promote using lumbar punctures and CSF analysis to monitor MS. Central to this is our LP service that now only uses atraumatic or non-cutting needles to reduce the complications of LPs in particular post-LP headaches.
#EndOrganDamage – Our lab service measuring CSF neurofilament levels more than trebled last year. Sharmilee and Lucia have done a remarkable job. At least four other UK centres are regularly requesting CSF NFL levels via our laboratory. We also have the peripheral blood assay working and are part of an International consortium to validate the assay. I suspect we may move from CSF to peripheral blood monitoring very soon.
#NAbs – We are in the process of validating our anti-alemtuzumab and other anti-drug antibody assays. We know NAbs are an important issue and explain why some pwMS fail to respond to biological therapies. NAbs, in particular, those targeting alemtuzumab, are also a window into the immunology of the drug and may be telling us why pwMS treated with alemtuzumab get so many secondary autoimmune diseases. Watch this space!
3. Policy
#OffLabel & #EssentialMedicine – In 2014 whilst I was on my 6-month sabbatical we formulated the Barts-MS Essential Off-label DMT list. This was to address limited access to DMTs in resource-poor countries. Off-label subcutaneous cladribine is one of the drugs on this list. We soon realised that trying to sort out access to essential medication was a problem and task too big for Barts-MS. I was fortunate to be invited to present some of our ideas to the board of the MSIF in 2015 and as some of our ideas dovetailed with their 5-year strategy they were able to take up the challenge. I was honoured and privileged to be asked to co-chair the MSIF’s WHO Essential Medicines panel with Brenda Banwell and to help prepare and submit a proposal to the WHO to get a limited number of DMTs on the WHO Essential Medicines List. We successfully submitted an application in early December. This was a mammoth task as it involved many different stakeholders and I want to thank the MSIF for making this a reality. Fingers-crossed!
#BrainHealth – Our Brain Health initiative turned three last year. We have continued to promote #BrainHeallth awareness in the 3-years since we launched the original policy document at ECTRIMS-2015 in Barcelona. However, as information is not sufficient to change behaviour we made progress in developing our international quality standards and have piloted them in three countries. In 2019 we will be focusing on disseminating the quality improvement tool and developing a #PatientActivation programme.
#Women4MS – In collaboration with Alasdair Coles, we highlighted the inequities in relation to women at the top table in the field of MS. Our blog posts and subsequent publication has set off a chain reaction and a response letter by female academics, who make the point that gender inequality occurs despite the availability of a substantial number of successful senior female academic neurologists and neuroscientists worldwide. DrRuth and her team have done some data trawling to highlight the problem further and these data will be published later this year.
#Run4MS – This is an initiative using parkrun programme to get pwMS and HCPs more active. #Run4MS is an ambitious, but important, initiative and is being run by the MS Trust.
#MS_is_1_and_not_2_or_3_diseases – We have continued to challenge the current dogma and promote MS as being one disease.
4. Education
#MSPreceptorship – We continue to run our MS Preceptorships that are designed to teach people about MS and the modern management of the disease.
#MSAcademy – I am the director of the MS Academy. This programme has expanded and included a meeting to tackle variance in the provision of MS Services in the UK. If you want to participate in the MS Academy please register for one of the upcoming courses.
#MS@TheLimits – I co-chaired our second MS@TheLimits meeting in London in November. Feedback from the delegates was remarkably good and we will endeavour to make this an annual event. For those of you who are interested, all the talks are now online, including Prof G taking a battering in a debate. To be fair I had to prepare my arguments in a few hours on the day of the debate as one of our debaters had to pull out at short notice.
#triMS-Online – We finally managed to get our virtual online conference started. Our first event was very well received and addressed all our objectives. The idea for this meeting was germinated and developed on this blog; so thank you. Who said social media was a one-way street? We learn as much from you as you learn from us. Please note that more than half of the steering committee of triMS.online are women and it includes many young people from all over the world; this is no accident.
#ECTRIMS2018 – We hosted a #ClinicSpeak stand at ECTRIMS; this year with a focus on #SelfMonitoring. The MouseDoctor and Sharmilee did their annual MS Hangout that is a real hoot and worth watching. We also arranged and ran the annual ECTRIMS Burning Debate. The motion debated was “The new McDonald diagnostic criteria make them difficult to use in clinical practice”. This year it was an all female event, which was to compensate for the all-male affair in 2017.
#MSFellowships – We continue to encourage and accept young trainees to our centre. This year was no exception and included a very bright and energetic Erasmus exchange student.
5. Patient-public Involvement or PPI
#DigestingScience – Alison and her team have continued to disseminate her Digesting Science programme in the UK and globally. The Digesting Science packs have been translated into two other languages. As this programme targets children of pwMS, we will be embedding it our PPI programme for #PreventMS going forward.
#ResearchDay – This year we decided to take our research day to the Hebrides and had a very successful meeting in Stornoway. The Stornoway talks are all online. Unfortunately, the London MS Research Day didn’t happen for a second year in a row. We need to do something about it. Any suggestions?
#ResearchBlog & #SocialMedia – We continue to run our blog with almost daily postings. I took a break from the blog to focus on grant writing but will make an effort in 2019 to post more frequently. I increased my social media activity to try and compensate, but there is not much you can say in 280 characters, which is not ideal
#ThinkHand – We held a very successful #ThinkHand event in London in Feb last year to celebrate hand function in pwMS. Our #ThinkHand event was bigger than simply an awareness campaign and we managed to get wider media coverage and bring several important stakeholders on board to support #Chariot-MS
What about 2019 and beyond?
The above summary is only a brief overview of some of #BartsMS’ activities in 2018. The list is not exhaustive but does give you an idea of what we are trying to achieve. 2019 will be more of the same, with an emphasis on the following #HashTags:
#ThinkHand
#ChariotMS
#OffLabel
#ThinkCognition
#ThinkSocial
#ThinkSequential
#AttackMS
#ThinkCombination
#PreventMS
#Women4MS
#Run4MS
#Walk4MS
#PlasmaCells
#Neuroprotection
#ThinkCure
#DietSpeak
CoI: multiple
What about #ThinkCure
Re: "#ThinkCure"Very good point; now added.
Also #Walk4MS
Re: "#Walk4MS"Done.
This is incredible. Thank you and the rest of your team for all your hard work!
Our pleasure, but don't forget we are just doing our jobs.
You are utterly amazing. Thank you. For those of us without smart phones is it possible to follow a hastag if one does not want to sign up for twitter?
#Hashtags are now part of most social media platforms; Twitter, Facebook, Google+, LinkedIn, etc. I post to all 4 platforms so if you don't have a Twitter account you can use one of the other platforms.
#Hashtags also work on WordPress. So when we move platforms later this month you will be able to follow them on our new blog.
You can read prof G tweets without signing uphttps://twitter.com/GavinGiovannoni?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor
Amazing thank you
What do #AttackMS and #PlasmaCells refer to?
Re: "What do #AttackMS and #PlasmaCells refer to?"#AttachMS is the new name for our #BrainAttack trial. The following post explains why we have changed the name; please read the comments.https://multiple-sclerosis-research.blogspot.com/2018/10/why-is-prof-g-dissatisfied.html#more
Re: "What ….. #PlasmaCells refer to?"This refers to our study using a myeloma drug to try and scrub the CNS clean of OCBs. More on this another time.
Plasma cells (PC) are found in the CNS of multiplesclerosis (MS) patients, yet their source and role inMS remains unclear.We find that some PC in theCNS of mice with experimental autoimmune encephalomyelitis(EAE) originate in the gut and produceimmunoglobulin A (IgA). Moreover, we show thatIgA+ PC are dramatically reduced in the gut duringEAE, and likewise, a reduction in IgA-bound fecalbacteria is seen in MS patients during diseaserelapse. Removal of plasmablast (PB) plus PC resultedin exacerbated EAE that was normalized bythe introduction of gut-derived IgA+ PC. Furthermore,mice with an over-abundance of IgA+ PBand/or PC were specifically resistant to the effectorstage of EAE, and expression of interleukin (IL)-10by PB plus PC was necessary and sufficient to conferresistance. Our data show that IgA+ PB and/or PCmobilized from the gut play an unexpected role insuppressing neuroinflammation.In summary, our findings demonstrate that gut-derived IgA+PB and/or PC play an important role in dampening neuroinflammation.Although pathogenic memory B cells are targeted byanti-CD20 (Jelcic et al., 2018), IgA+ PB and/or PC will be spared,potentially explaining the robust and rapid efficacy of anti-CD20treatment in MS. Moreover, our results provide a rational explanationfor the MS disease exacerbations provoked by atacicept(TACI-Ig) (Kappos et al., 2014), and the worsened EAE weobserved in TACI / mice mirrors this findinghttps://doi.org/10.1016/j.cell.2018.11.035
I have also just added #DietSpeak to the list. This is a topic I have been researching now for 2+ years and promise to do a series of post on this subject in 2019.
Agree totally with Anon today – you are all amazing, not just for these achievements, but for the drive and ambition you all show!As another year kicks off I hope that your focus and energy continues in such positive ways, including not making mice swim eh MD?! Following on from my reading Tim Spector on diet and gut health in 2018, I'll look forward to your posts on this subject ProfG.Wondering about #widereducation It drives me nuts: the inaccurate information put out in the media, especially newspaper articles. Also struck by public perception that MS = end up in a wheelchair. When I explain range of symptoms, and that it is the leading cause of disability in young adults, second only to traumatic injury, or that it's a rare form of dementia then see the looks of shock and hear the 'how didn't I / we know this' reactions. Also agree with recent reply to a post that mentioned the sacharine way MS is presented on charity sites.
Re: "… Tim Spector on diet and gut health…"His book 'The Diet Myth' is very good, but he makes the mistake of recommending a diet based on his own personal experience and world view. Unfortunately, most of his recommendations are not evidence-based. But his self-experimentation approach is something we all should do within a theoretical framework and not forgetting that diet is cultural and defines who we are as individuals and as a society as a whole.
Re: "..Wondering about #widereducation …"This is clearly needed, but it needs to done at a level we don't have time and resources to do. We also need to take personal responsibility to interrogate our sources of information, which is why I only consume news from reliable sources, sources that tend to cost money.
Yes, on reflection I can see there's too huge a demand to anywhere near addressing #widereducation. I suspect Tim would challenge your assertion his recommendations are not evidence-based. As a lay person who attempts to 'consume from reliable sources' I checked out before reading The Diet Myth and was persuaded of the likihood of it being a legit read from learning things such as: Tim has held the European Council Senior Investigator award for Epigenetics.Whether way, like all Blog readers I'm confident of the potential benefit to personally making use of content from your diet posts and the other # that have been implemented or will be a focus into the future.Thanks again.
Have you read Michael Pollan's food books? He understands the cultural side of eating, food and diets and deals with these issues much more sensitively than Tim Spector. But then he is journalist at the top of his game.
No, but thanks for the heads up – I'll look forward to having a read of Pollan's books.
All I know is that a patient diagnosed today and a patient diagnosed 20 years ago will end up the same after 15-20 years in the disease (if you exlude those few who have very active disease and can get Alem. -and actually respond to it. HSCT is not yet an option for patients, so no difference there too).Next time make a banner, "What is the progress we have made the last 20 in MS, really?". Very little I say.18 out of 40 did get NEDA-3 in Alem. Half full or half empty?https://www.neurologyadvisor.com/multiple-sclerosis/no-evidence-of-disease-activity-neda-3-and-disability-improvement-with-alemtuzumab-ms/article/823868/
Well, that New Year resolution to be positive didn't last long, did it?
Re: "…HSCT is not yet an option for patients…"Yes, it is. It is on the NICE HSCT guideline that BMT units work to. Haematologists can use 15% of their BMT capacity to treat autoimmune diseases of which one on the list is MS. We have been referring patients for HSCT in London for ~4 years.
Agree MD2 – reminds me of something said on a tv program, by a brilliant old guy who worked on the Burma railway as a Japanese prisoner of war. When asked about his survival he replied: 'two men look out of prison bars, one sees mud and one sees stars'
Hi FiSimilar to Oscar Wilde's "We are all in the gutter but some of us are looking at the stars".
Correction any disease.activity and you can get.alemtuzumab in Europe.it.has tje most liberal licence
Stem cell any information on if it will be a treatment for MS
Haematopoietic stem cells yes the rest not at the moment