#MSCOVID19: a call to arms

Barts-MS rose-tinted-odometer: ★★★
Black and Gray Hurricane Friday, #000000 #d3d3d3

I was kindly invited by David Martin the CEO of the MS Trust to participate in a  Parliamentary round table meeting on Multiple Sclerosis on Tuesday. The meeting was chaired by Helen Hayes MP, who impressed me immensely and reassured me that the Labour party has some serious talent and committed MPs on the backbenches. 

The meeting highlighted the massive task ahead of us post-COVID in relation to MS services. COVID-19 has turned the perfect storm the MS community was facing before the pandemic into a category 5 hurricane. I am not sure if you are aware that during the pandemic there has been an approximately 30% reduction in patients with MS starting disease-modifying therapies (DMTs). Where are all these new patients? I suspect waiting to be referred into the service or stuck in diagnostic pathways. 

Photo by NASA on Unsplash

In addition, to new patients waiting to be diagnosed there are patients with PPMS and SPMS waiting for MRI scans to assess if they have active progressive MS in the hope of starting ocrelizumab or siponimod. Add this to reduced MRI capacity, a reduction in neuro-rehab resources, a rising incidence of MS, an ageing workforce with many early retirements, BREXIT, reconfiguration of the NHS and rising expectations from a more informed MS patient population and you begin to realise the task at hand. 

Having thought a lot about Tuesday’s meeting I think we need to get the MS Community together to reflect on what has happened over the last 18 months and formulate a plan for what the management of MS is going to look like after the pandemic.

COVID-19 has changed my MS practice for the better and for the worse. What can we learn from our experiences, what should we ditch, what should we improve on and what practices can we take forward into the future? I think we have an opportunity to radically change the MS service model.  

If you have any experiences and/or ideas for diagnosing and managing MS in the future please share them with us. 

I am asking my colleague Dr Wallace Brownlee, who has taken over from me as director of the MS Academy if he can host a meeting to discuss these issues and what our response should be in the wake of the pandemic. Why the MS Academy? It is an inclusive umbrella organisation that represents many different MS stakeholders, which makes it an ideal platform to bring the relevant people together. 

Let’s think, let’s reflect, let’s meet face-2-face, let’s share our experiences and let’s formulate a plan together.


Conflicts of Interest

MS-Selfie Newsletter  /  MS-Selfie Microsite

Preventive Neurology

Twitter   /  LinkedIn  /  Medium

General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice. 

Passing on the baton

Barts-MS rose-tinted-odometer: ★★★★★

As an academic neurologist and MS researcher, it is one thing to generate new ideas and data, it’s another thing to get people to adopt them. Therefore the dissemination of knowledge has dominated my agenda in the past few years. With a resetting of my priorities back towards research I have passed the education baton to younger colleagues. This includes my role as director of the MS Academy. This doesn’t mean I don’t support the aims and objectives of the MS Academy, which in short is to upskill and train the next generation of HCPs working in MS. So if you are interested in MS please sign-up for one of the MS Academy’s masterclasses. In addition to education, the MS Academy is rapidly expanding its membership and has become the ‘British Society of MS Healthcare Professionals’ with the aim of improving MS services and outcome for our patients. There are still a few places left on the upcoming Foundation and Advanced classes. 


Conflicts of Interest

Preventive Neurology




General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

Is that revolver loaded?

Barts-MS rose-tinted-odometer: ★★

Are you lonely? Have you lost a loved on during COVID-19? Have you lost your job or had to reduce your income because of COVID-19? Can you make ends meet at the end of the month? Are you worried about your future? How is your relationship with your partner? Are you depressed? Anxious? Are you sleeping well? Are you drinking too much alcohol? Are you feeling guilty? Self-loathing? Failed ambitions? …..

These sorts of questions rarely come up in a standard MSology consultation because most classically trained HCPs working in a secondary or tertiary care environment haven’t been trained to deal with what we refer to as the Social Determinants of Health (SDoH). However, it is clear the SDoH have an outsized impact on health outcomes, which is likely to include MS outcomes. This is why we launched our #ThinkSocial campaign several years ago and have started several activities to see if there is anything we can do to help tackle the SDoH. 

A story: Recently one of my patients chastised me for telling her off for her poor diet, which consisted mainly of bread. She lives alone, which may explain why she eats so poorly. She has marmite or jam on toast for breakfast, a sandwich for lunch and if she feels hungry another piece of toast for dinner…..

What should Prof G do to manage this patient?….. find out

I can clearly see the cynics saying ‘focus on what you are trained to do and leave the SDoH to general practice, social care and the charitable sector’. Yes and no. Yes, it is easy to say this is not my responsibility, but when you are trying to do your best medically to improve MS outcomes only to get trumped by the SDoH it makes it look like your service is failing. Our patient population in the east end of London is one of the most deprived populations in England. When we recently analysed deprivation data from HES (hospital episode statistics) the only area worse off than us in England was Liverpool. On the other end of the scale were Cambridge and Oxford. So if we compared outcomes of the MS patient populations in Liverpool and east London and note they are doing worse than pwMS living in Oxford and Cambridge it may not have anything to do with our MS and other services, but simply represent levels of deprivation and its associated poorer outcomes.

How SDoH result in poor outcomes is likely to be due to the effects of chronic stress on the brain. Stress is a well-defined biological or physiological response of the body. Stress results in high levels of so-called stress hormones. These stress hormones have a direct and negative effect on the brain and other organ systems, which causes them to age prematurely and malfunction. Ask anyone who is stressed and they will tell they don’t feel well. Stressed people and stressed populations are more forgetful, more tired, have poorer sleep and tend to engage in unhealthy behaviours (smoking, alcohol, poor diet, sedentary) and have much higher mental health problems (depression, anxiety, addiction, suicide). In general, pwMS are more stressed and the reasons for this are not only obvious but potentially modifiable.   

The main stress hormone is cortisol. Cortisol works via glucocorticoid receptors, which are found all over the body including the hippocampus, amygdala and frontal cortex, three brain regions involved in memory and emotions. Chronic stress is associated with reduced volume and malfunction of these areas. In pwMS, these areas may already be damaged from MS lesions, which increases the MS brain’s vulnerability to chronic stress. So if you want to improve MS outcomes you can’t ignore the SDoH and chronic stress. Do you agree? 

This is why I have been promoting the marginal gains philosophy to the management of MS, which is based on Sir David Brailsford approach to competitive cycling and is the reason why the British cycling teams has been so dominant in the last two decades.  

“The whole principle came from the idea that if you broke down everything you could think of that goes into riding a bike, and then improved it by 1%, you will get a significant increase when you put them all together.”

Sir David Brailsford

“If we break down everything we can think of that goes into improving MS outcomes, and then improving each one by 1%, we will get a significant increase when we put them all together.”

Prof. Gavin Giovannoni

So when we launched our ‘no patient left behind’ motto at the first MS Academy ‘Raising-the-Bar’ meeting to address variation and inequalities in access to MS healthcare in the UK we included a workstream to tackle the SDoH. How we do this is currently being defined, but we have an ambitious programme of work. Whatever happens, we will need to involve the whole MS community, which includes readers of this blog. So if you have any ideas to tackle the SDoH please share them with us. 

Lupien et al. The effects of chronic stress on the human brain: from neurotoxicity, to vulnerability, to opportunity. Frontiers in Neuroendocrinology April 2018, 49:91-105.

For the last five decades, science has managed to delineate the mechanisms by which stress hormones can impact on the human brain. Receptors for glucocorticoids are found in the hippocampus, amygdala and frontal cortex, three brain regions involved in memory processing and emotional regulation. Studies have shown that chronic exposure to stress is associated with reduced volume of the hippocampus and that chronic stress can modulate volumes of both the amygdala and frontal cortex, suggesting neurotoxic effects of stress hormones on the brain. Yet, other studies report that exposure to early adversity and/or familial/social stressors can increase vulnerability to stress in adulthood. Models have been recently developed to describe the roles that neurotoxic and vulnerability effects can have on the developing brain. These models suggest that developing early stress interventions could potentially counteract the effects of chronic stress on the brain and results going along with this hypothesis are summarized.

CoI: multiple

Twitter: @gavinGiovannoni                                              Medium: @gavin_24211

#TeachMS: virtual MS Academy meetings

If you are a Healthcare Professional (HCP) and are interested in getting up to speed on some advanced topics around the management of MS please take a look at the programme below. We converted our November meeting to be virtual, which has opened some spaces for more people to attend.

Please register via the following link: Advanced MS Academy 4-6 November 2020 Online.

If you have any queries please don’t hesitate to contact me. In addition, if you have any topics you think we should cover please let me know.

CoI: multiple

#MSCOVID19 & education: changing the way we manage MS one young brain at a time

Barts-MS rose-tinted-odometer: ★★★★★

At Barts-MS we spend a lot of time teaching people about MS. It is not only important to generate new information (ideas, testable hypotheses and research), but also to disseminate knowledge (teaching). However, with the COVID-19 pandemic and the resultant social distancing, almost all teaching has gone online and that does not make for very engaging and interesting. Most of us are webinar-ed or Zoomed-out. I wrote a piece on Medium that I titled Zoomed-Out addressing this exact point. 

Can we make teaching the next generation of potential MSologists more interesting? I think we can. The following is an example of case-based teaching we are trying out at our first MS Academy Basecamp in a few week’s time. Let’s hope it works and it encourages more junior doctors, nurses, therapists and other allied HCPs to plan a career in multiple sclerosis. 

Scenario 1: You are called to see a case with double-vision due to an internuclear ophthalmoplegia (INO) in casualty and an abnormal MRI suggestive of MS.

  1. How are you going to confirm the location of the lesion?
  2. How do you diagnose MS?
  3. What MS mimics do you need to exclude?
  4. How do you profile the patient’s prognosis at baseline?
  5. Is the patient eligible for DMTs?
  6. How do you de-risk the DMTs?

Scenario 2:  Your consultant asks you to see a young woman of 26 with her partner. She is coming for a scheduled follow-up appointment after a diagnostic work-up for MS. The consultant tells you she has MS.

  1. How are you going to confirm the diagnosis of MS before seeing her?
  2. How are you going to tell her the diagnosis?
  3. How are you going to counsel her about her future disease course?
  4. She asks if she can have a family. What are you going to tell her?
  5. What is active MS, highly active MS and rapidly evolving severe MS?
  6. What is the difference between maintenance-escalation and immune reconstitution therapies? How are you to explain the difference to them between these two treatment options? 

Scenario 3:  You are asked to do an MS follow-up clinic for your consultant neurologist? 

  1. How are you going to prepare for the clinic?
  2. What information are you going to record in the medical notes?
  3. How are you going to investigate and manage an MS-bladder?
  4. How do you manage MS-related fatigue?
  5. Should you routinely screen for and manage MS-related cognitive impairment?

Scenario 4: You attend your departments, MS Research Day, for patients with MS and are asked to prepare a teaching session for the attendees.

  1. How do you explain the cause of MS to the attendees?
  2. What are the latest treatments available for progressive MS?
  3. A woman attendee asks you about the risks of her children getting MS. What do you tell her?
  4. An attendee asks about stem cell therapy; how are you going to counsel her? 

What would you want us to teach the next generation of MSologists and how? 

CoI: multiple

Twitter: @gavinGiovannoni  Medium: @gavin_24211

#MSCOVID19: Lymphopaenia

I am giving an MS Academy masterclass webinar today on the topic of lymphopaenia and its relevance to managing MS during the COVID-19 pandemic. My talk goes back to basics and tries to explain how the normal range and WHO grading system came about and includes the important topic of immunosenescence.

You are welcome to sign-up for the webinar. If you can’t manage to log-on to the live webinar it will be recorded and put on-line after the event.

The following are my slides for today’s webinar:

CoI: multiple

Yin-yang – day 2 COVID-19 lockdown

The yin and yang of COVID-19.

I have spent day 2 of London’s lockdown doing MS-related webinars; i.e. attending meetings virtually. For every negative, there is a positive, the yin-and-yang of COVID-19.

Environmental activists are claiming SARS-CoV2/COVID19 is simply nature’s way of fighting back. We have pushed planet earth and its environment to the brink and it is responding as predicted.

The fact that academics such as me are working differently has to be a good thing. Do you agree? This is something I am very aware of and is one of the reasons why we started triMS-online; virtual conferences are clearly the way we are going to exchange information in the future. Our MS Academy webinar on “Managing MS remotely during the COVID-19 pandemic” takes things one step further, i.e. how can we revolutionise the management of MS and do as much as possible remotely.

COVID-19 massively reduces air pollution

The combined value of the world’s stock markets is related to global GDP, which in turn represents global consumption. The fact that the major stock markets have crashed by over 30% the world’s global consumption energy and other resources will be plummeting. This is forcing us to work differently. Is this not a good thing?

We may all be anxious and worried about the crisis we are in at present, but it will pass. This virus (SARS-CoV2) is virulent, but not that virulent. A global pandemic of SARS and MERS, with the same level of infectivity as SARS-CoV2, would have been an order of magnitude worse. Maybe we should be saying this pandemic could have been much worse.

I think we will look at back 2019 and 2020 as being the turning point when the world realised we need to take the environment seriously. The images of Australia burning and COVID-19 sweeping across the world is telling us that we are going to have to do things differently in the future.

COVID-19 is forcing us to work differently, which happens to be more environmentally-friendly, and is challenging the Victorian model of healthcare. One very positive thing that may come out of this epidemic is that we may just prevent ourselves from going beyond the environmental tipping point.

Despite my environmental optimism, this does not help you in the here and now, which is why I have spent the better part of the last 3 days getting my MS-Selfie (www.ms-selfie.org) website off the ground and answering your questions about COVID-19. I have addressed the next batch of questions, but as I answer questions more come in so apologies if I haven’t got to your questions yes. Once I am redeployed, which I expect to happen in about a week’s time, I may not have time to do any online activities.

CoI: multiple

#COVIDMS Managing MS remotely during the COVID-19 pandemic

We had to postpone one of our MS Academy foundation courses this week due to the COVID-19 pandemic. In its place, we are doing a series of webinars. The first one was held yesterday morning with an overview of COVID-19 and how it is forcing us to be creative in managing MS over the next few weeks and months.

The following is my presentation and you can download the slides from my DIY-SlideShare site. I am aware that the MS Academy will be uploading the webinar to YouTube in the next few weeks.

I also spent yesterday designing and populating a #MSCOVID19 microsite written and a beta version is live. It is a work in progress, but over the next few days and weeks, it will become more comprehensive. I will be answering questions and presenting cases studies on the site. I have already had 20+ questions posted via the site and will work on getting these answered an online today.

CoI: multiple