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).
#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.
#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!
#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.
#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: