Category: News and events

Make time for learning

I would like to thank all our readers for persevering. Tomorrow is the launch of the first triMS-online virtual conference. The ideas underpinning this meeting arose from suggestions on this blog.


The driving principles underlying triMS-online are:



  1. High-quality, short, themed meetings that are of the moment; too often the larger conventional meetings are planned months and years in advance and don’t necessarily have the flexibility to present topical subjects. triMS-online wants to be different.
  2. Access to international experts using a shorter format than that is traditionally used at conventional conferences; we don’t want viewer’s drifting off because the talks are too long. All presenters are being trained to give punchy well-timed talks. We know human attention span, particularly online, is short.
  3. A more diverse group of presenters, i.e. younger presenters, with a more international flavour and with gender equality in mind.
  4. Synchronous and asynchronous attendance; you can log-in and watch the meeting live or come in after the meeting is over and watch the talks at a time that suits you.
  5. Access; online meetings will allow people from all over the world to access high-quality online content. This is particularly relevant to people living in resource-poor countries who don’t necessarily have the finances to travel to International meetings in expensive cities.
  6. Environmentally friendly; we hope that by attendees not needing to travel we can help reduce the environmental footprint of meetings.
  7. Create a platform and format that can be used locally or regionally. We anticipate creating a triMS-online X platform in the near future, which will allow others to host regional meetings; these could be different languages and addressing specific topics of interest to specific countries.

The following is the first triMS-online programme; it is not too late to register. 

We would encourage young academics, in particular, those who are disadvantaged and from under-represented groups to submit ideas and posters for the next meeting.

 CoI: multiple

Chief Energy Officer, or not

The MS Academy held our first #MSVariance meeting on 1st and 2nd of November in Birmingham. We were oversubscribed, which would indicate that there is an appetite for change in the way we practice MSology in the UK. I learnt a lot from the meeting and had several of my assumptions challenged.



Lesson 1: Be more proactive about including women and other under-represented groups in the meeting from the beginning. Our apologies for not including women on the steering committee; it was my mistake. The steering committee self-selected each other based on a discussion we had about #MSVariance following a debate on this topic at the ABN earlier this year in Birmingham. We have already made amends and have approached some women to help taking things forward so that this initiative gains momentum.


Lesson 2: Variance does not imply inequality. I thought variance, in the context of MS services, as being a euphemism for inequality. It is not. The variance in MS services and their provision may arise at the top due to improvements in access and the rapid adoption of innovations. This then could act as a stimulus or other centres and individuals to up their game and to improve things. In other words, variance acts like an evolutionary selection pressure; i.e as a driver for improvement. The question is that we need to make this variation transparent so all can see it and respond to it. For this to happen we are going to need to set-up a rolling national audit.


Lesson 3: Don’t be too hard on ourselves and celebrate the successes. We were very fortunate to have Stephen Bleach a Times Editor and Journalist who has MS attend and speak at the meeting. He had written a personal account of having MS in the preceding week’s Sunday Times. He compared his journey with the disease to that of his late father’s. His father developed MS in the pre-DMT era when MS services were poorly developed and he tragically had a very poor outcome. At the end of the meeting he got up and reminded us to celebrate his success; his MS was diagnosed and treated rapidly and he is now doing very well and working full time. His future with MS may still be uncertain, but it promises to be a much better future than what his father had at the same stage. Stephen’s perspective is important, but his experience is what we need to replicate across the country. Time is brain and there are simply too many people with MS outside the system, with unacceptable delays getting into the system to be assessed for treatment. In addition, access to MS services is highly variable with some people having to travel long distances to be assessed.


Lesson 4: Don’t reinvent the wheel. There are a lot of initiatives that are currently running to address some of the issues that underpin #MSVariance. NHSE are reviewing the configuration and implementation of neuroscience services, which includes MS. GIRFT (get it right the first time) is also looking into what it can do to raise neurological standards across the country. What we clearly need are well-defined channels to disseminate information accurately and timely. It is clear that there are pockets of excellence across the country and that we need to celebrate these and get them to share best practice. The MS Trust has a mechanism to do this, with several cases studies that have been published on the MS Trust’s website. There is clearly an appetite for centres to be able to access each other’s protocols and this is something we can do relatively easily and effectively using the MS Academy.


Lesson 5: This initiative goes beyond DMTs. At the start of the meeting, there was some discussion about the focus of the initiative. Many attendees felt strongly that it should not only be about reducing variation in the prescribing of DMTs, but it should include the needs of all MSers, in particular, those with more advanced or progressive MS. I couldn’t agree more.


Lesson 6:  Expanding the brief to look at the social determinants of health. These are clearly important for health in general and almost certainly play a role in MS outcomes. However, data presented on this specific topic show that more research is needed. On a similar note, there was some discussion about social capital and lifestyle and wellness. Therefore, we will need to think carefully about how we incorporate these components into any metrics we develop and specific programmes to improve social capital and wellness.


Lesson 7: Chief Energy Officer. As I left for the meeting on the first morning of the meeting my wife mentioned to me that the main role of a CEO is being changed to that Chief Energy Officer. She said that my role at the meeting was to create the necessary energy and to inspire people to make change happen and to take control. In fact, Ben Bridgewater, one of the external speakers, implored us to #TakeControl and #ToMakeItHappen. If we didn’t make it happen then no one else would. I must admit my energy levels have been rather low; too MSed out, which is why I have taken so long to pen this post. However, I am just back from a very special holiday and feel rested and energised.


Lesson 8: Patient Activation. There is a difference between ‘patient engagement’ and ‘patient activation’. George Pepper, from shift.ms, gave a brilliant talk on what true patient activation should look like. It was clear that we need to define it and to make it happen. Patients who are actively engaged in their care are the true change agents. What we need now need to do it create the environment both inside and outside the NHS. In fact, we are planning to do this for our #BrainHealth #TimeMatters initiative and the following is a draft programme to train MSers to become #MSActivists. Please note this initiative is global, but will also include MSers from the UK. If you have any ideas to add to the programme below please do not hesitate to contact me.  


Draft BrainHealth Training Course for People with MS
(2-day course)


  1. Pre-reading and online content review, a needs analysis (online survey) and to prepare a short 2 min presentation on who you are and what delegates want to achieve as a Brain Health Champion / Ambassador


  1. Introduction – Gavin Giovannoni
    1. What is the MS Brain Health initiative and why is it important for people with MS?
    2. Introductions – each person does a 2-minute presentation
  2. Objectives of the BrainHealth Champions Programme – Gavin Giovannoni
    1. Why do we need Brain Health champions?
    2. How can you help?
    3. What is your role locally, nationally and internationally?
  3. Patient activation and empowerment – TBA
    1. This component will define what we mean about patient activation and how to empower yourself with knowledge. This will cover the essential components of what should be in a patient bill of rights and/or patient charter. It will also cover shared decision-making and what constitutes best practice in terms of shared-decision making.
  4. Health Policy and how it applies to the treatment of MS – External Speaker who is an expert on policy
    1. In this section, you will learn about health policy and how to use it to promote better MS services and ultimately better outcomes for people with MS.
  5. Personal branding, how to create an online profile and to use social media effectively – External Speaker who is an expert on branding and social media
    1. This will component of the training programme will cover (1) personal branding, (2) your online presence, (3) how to use social media and (4) how to use tools to automate your online activity.


  1. Brain Health Tools – OHPF
    1. This component will review the available Brain Health tools, patient check-list and future plans
    2. Breakout sessions to come up with new ideas for tools and initiatives to drive innovation and its adoption.
  2. Social Capital – TBA
    1. How important are the social determinants on MS outcomes?
    2. How to measure social capital?
    3. How to create or expand social capital?
  3. Review of the competitive space
    1. Lessons from other disease areas, e.g. dementia, type 1 diabetes
    2. Partnerships: setting-up partnerships with other groups
    3. How to share best practice
  4. Projects and mentoring scheme
    1. A session on potential projects to kick-start Brain Health initiatives locally
    2. How to get funding for projects
    3. Buddy up with a national mentor to help participants implement their Brain Health projects
  5. Follow-up webinars to review projects
    1. This will include online presentations of the specific Brain Health projects
        
  6. Conclusion
    1. Certificate of attendance and confirmation of being a Brain Health Champion
    2. Award for the best project
    3. Potential publications of best projects
    4. The inclusion of projects on Brain Health website
CoI: multiple

triMS-online: helping female academics

Another development at ECTRIMS 2018, which I heard about via the ECTRIMS grapevine, is that female academics are mobilising and have formed a group to demand gender equality at the top table of MS academia. Good!






 Apparently, our posts on this blog (MS Establishment) and our recent letter to the Annals of Neurology (MSexism) has triggered a response from female neurologists and female academics working in the field of MS. The women involved have penned a letter that they are, or have, submitted to the Annals. I haven’t seen it, but I and sure it will address the issues at the heart of this debate.

 From my perspective, three things happened at ECTRIMS that are relevant to this debate. Firstly, we held our first face-to-face ORATORIO-HAND (ocrelizumab in PPMS trial extending into wheelchair users) steering committee. The first, steering committee with close to 50% female representation; we wanted 50%, but due to family and other commitments some women who were approached were unable to participate; the female headcount is over 40%. 


Secondly, the Burning Debate at ECTRIMS this year was an all female affair. This was deliberate and was designed to counter the all-male debate we hosted last year. 


Thirdly, we have now launched triMS-online, the first virtual online conference for MS. The aims of triMS-online are multiple. You may remember that the original idea of triMS-online came from this blog. The objective is to do punchy, short, themed MS-related conferences online that can be viewed live or asynchronously in your own time. triMS-online is also environmentally friendly; imagine how many air miles we are avoiding by not having to fly people to conferences?

 The other advantage of triMS-online is that it takes high-quality MS research and education to resource-poor environments across the globe. We want a new generation of MS researchers and HCPs to have access to the latest MS research and teaching. 

 As founding chair of the scientific committee of triMS-online, I wanted to use the opportunity to shake things up a bit. When you go to ECTRIMS it is generally the same-old faces and KOLs on the platforms. We, therefore, invited a diverse group of ‘young’  MS academics from across the globe to run triMS-online and we made a strategic decision of having at least an equal number of women on the steering committee; in fact, 6 out of 10 members are women.

 The following is the first triMS-online programme. We plan to run about 2-3 a year and have many ambitious plans for the triMS-online platform going forward. I, therefore, urge you to register. We will be inviting feedback, including suggestions for future meetings.

We would encourage young academics, in particular, those who are disadvantaged and from under-represented groups to submit ideas and posters for the next meeting.

 CoI: multiple

Early reflections on ECTRIMS 2018

I am writing this post on the flight back to London from Berlin. Being trapped in a tin tube at over 10,000m above sea level is always a good time to think.

under&over – ProfG’s #1 non-scientific highlight at #ECTRIMS2018


Guess what my #1_scientific_highlight was at #ECTRIMS2018?

Raju Kapoor with ProfG’s #1 scientific highlight at #ECTRIMS2018

The avalanche of neurofilament data, in particular, the serum neurofilament results from the natalizumab SPMS, or ASCEND, trial. This was presented by Dr Raj Kapoor as a late-breaking poster. In summary, it showed that peripheral blood neurofilament levels were responsive to natalizumab therapy regardless of whether or not SPMSers had baseline Gd-enhancing lesions (aka baseline activity). 


Why is this so important?

Please remember that the population of SPMSers in the ASCEND trial were very advanced with more than 60% needing a walking stick or sticks, i.e. they were almost off their feet and had markedly reduced reserve in the neuronal system supplying their legs. This study was negative on lower limb function (EDSS and timed-25 foot walk), but positive on upper limb function (9-hole peg test) at 2-years becoming positive at 3 years in the extension study. These results are consistent with MS being a length-dependent central axonopathy. The good news is that these results are now backed-up with data from the hottest biomarker in town.

An interesting observation that has yet to be published from the ASCEND trial is the data showing that natalizumab-treated SPMSers are more likely to have a confirmed disability improvement compared to placebo-treated subjects in the 2-year period of blinded observation. Could the drop of peripheral blood NFL levels indicate not only a reversal of the neurodegenerative pathology but possibly be a marker of neuroregeneration? Pity we don’t have CSF from this trial it would be fascinating to look at regenerative biomarkers, i.e. is there any evidence of axonal sprouting and synaptogenesis on natalizumab?

What this new blood NFL analysis tells us that so-called non-relapsing advanced MS is inflammatory and this inflammation is modifiable by a highly effective MDT such as natalizumab. Please note that this was not seen in the data presented on the effect of siponimod on peripheral blood NFL levels at the AAN earlier this year.

I am now convinced that natalizumab is an effective treatment for SPMS. It also further validates serum NFL as a surrogate marker of neuroaxonal damage in MS. Is there now enough data for the regulators, i.e. the FDA and EMA, to evaluate NFL as a surrogate end-point for MS? I personally think so, which is why we have been using CSF NFL levels in clinical practice at Barts-MS for about 3-4 years to aid clinical decision making. We use CSF NFL as an inflammatory biomarker and include it in our treatment target for more advanced MSers.

Once the FDA and EMA accept NFL as a surrogate end-point in MS I would urge Biogen to go back to the regulators to discuss natalizumab getting a label for progressive forms of MS. If Biogen don’t think they have a chance of getting a label change via this route I would urge them to do ASCEND-2 or ASCEND-HAND, i.e. trial of natalizumab in advanced MS only this time extending recruitment into MSers in wheelchairs. Another option is to do the randomised withdrawal study that I proposed last year. The latter would have to be done in the UK, where we are being forced to stop DMTs in MSers who become wheelchair bound. The idea is to randomise people to placebo or natalizumab with the primary outcome being time to confirmed relapse or evident disease activity using MRI and serum NFL levels. Some of you may ask, what about PML? Yes, what about PML? This can potentially be derisked using the current tools including extended interval dosing (EID) in the trial. I have also made the point that JCV and PML are biological problems and they will be cracked with time. We need to keep up on the pressure on the scientific community to solve these problems.

I was asked by a colleague at ECTRIMS if I envisage NFL replacing MRI as an assessment of MS disease activity? Potentially, yes. The good thing about NFL monitoring is that it is an integrator of MS disease activity and will assess both brain and spinal cord activity. This is important because most of us don’t include spinal cord imaging in our monitoring protocols. NFL is also potentially cheaper and easier to standardise and as it is a lab-based immunoassay could really help in resource-poor environments with limited access to MRI. It will also be more convenient for patients; having a blood test is quicker and easier than coming in for an MRI scan. At the moment one company have the monopoly on peripheral blood NFL measurements and are charging an extortionist price for their assays, reagents and the maintenance of their platform. The other good news at ECTRIMS is that competition will be arriving soon in the NFL space. Hopefully from at least another two platforms, one of which who has a large footprint in routine laboratories. We need some good old competition to drive down prices.

In support of NFL replacing MRI monitoring was a poster from Tjalf Ziemssen’s group in Dresden showing that when you do monthly blood NFL levels, NFL levels were noted to rise prior to detecting MRI activity or clinical relapse. This is not surprising; I have data from my PhD on daily urinary neopterin levels, an inflammatory marker, showing the same thing. So yes, I envisage a world in the not so distant future when MSers will be having frequent blood neurofilament levels measured, hopefully, using home finger-prick technology to monitor their MS disease activity. Once we get to this stage then we will be able to apply true precision medicine to individual patients and we will be able to optimise treatments based on real-time biomarker measurements.

We have been working on NFL in MS for over 15 years and to see it transforming MS research and translating so fast into clinical practice makes the work we have done seem worthwhile.

CoI: multiple

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