I was asked about which paper I have written or co-written that has or will have the most impact in the field of MS. There is little doubt that it is our report of our 2017 workshop on “EBV Infection and MS Prevention”.
This report (see below) was the catalyst for creating the Preventive Neurology Unit (PNU), which is embedded in the Wolfson Institute of Preventive Medicine. The funding for the PNU allowed us to employ Dr Ruth Dobson to be the academic lead on the MS Prevention workstream in the PNU. All we need now is a sterilising vaccine against EBV, the necessary funding so that we can set-up an international anti-EBV MS Prevention study and support from the public to do this study. Once we have all these in place we will be a position to finally test the hypothesis that EBV is the cause of MS. There is nothing in the field of MS research that excites me more than testing this hypothesis. Do agree? What excites you? Any other recommendations?
CoI: multiple
Swiss-cheese
Barts-MS rose-tinted-odometer: zero-stars
What do you say when I colleague chastises you for stating the fact that MS is potentially a ‘preventable dementia’? This particular colleague was clear that there is no need to draw any parallels between MS and other neurodegenerative diseases because of the negative connations that the term dementia has. I had to remind him that MS ticks all the boxes for being classified as a dementia; i.e. (1) MS is an acquired and not a congenital disorder; (2) MS is a chronic progressive disease; (3) MS impacts on multiple cognitive domains and (4) MS impacts on social and occupational functioning. Have I missed something?
I also had to remind this colleague that almost every neurology or psychiatry textbook included MS on its list of causes of dementia. I am not prepared to peddle alternative facts because pwMS may find it distressing to find out that if MS is left to its own devices it will shred their brains and cause dementia. Please note the rose-tinted-odometer is set to zero for this post.
The small study below reiterates what we already know that both relapsing and progressive patients have cognitive problems that correlate with physical disability. This study also confirms that T1 hypodensities or blackholes on MRI, particular in the thalamus (a deep grey matter structure in the brain) predicts cognition problems. T1 hypodense MS lesions or black holes, or at least a proportion of them, have been shown to be very destructive and include lesions with so-called phase-rims (iron around them) and a subset we call SELs (slowly expanding lesions). Some neuroradiologists often describe an MS brain with a high volume of black holes as being similar to Swiss cheese in reference to Emmental cheese.
Now for the good news is that these studies below are on patients with significant end-organ damage and if we can diagnose and treat MS effectively early on we can prevent or at least delay the end-organ damage and the progressive loss of cognition. This is why we have spent years promoting the concepts of ‘Time-is-Brain’, ‘Treat-2-Target of NEDA’, ‘Rapid escalation’, ‘Flipping-the-Pyramid’, ‘Brain Health’, ‘Beyond-NEDA preventing end-organ damage’, ‘Holistic Management’, ‘Marginal Gains’, etc. Buried in all of these concepts is the use of effective DMTs to prevent end-organ damage and to prevent dementia.
I am very pleased that my pwMS in Australia have taken this one step further and launched their own awareness campaign, albeit sponsored by Biogen, to raise awareness about early effective treatment (www.msmotion.com.au). The campaign is been run by a group of MS social media influencers. I met them all virtually last year and spoke to them about the concepts that underpin our ‘Brain Health: Time Matters’ policy document. It would be great if pwMS across the world could do a similar thing.
Do you agree with my colleague above that we should try and protect pwMS from the harsh realities of MS and what can happen to their brains if we don’t manage their MS appropriately? Or should we peddle false facts and a rose-tinted view of the world?
de Paula Gois et al. Associations between cognitive and clinical disability across MS subtypes: The role of the underlying brain damage. Mult Scler Relat Disord. 2020 Dec 19;48:102701.
Background: Cognitive impairment (CI) is present in all stages and subtypes of multiple sclerosis (MS). However, the majority of studies examined relapsing-remitting (RRMS) patients, and did not address cognitive phenotyping. Is still not clear whether patients with progressive MS (PMS) have a distinct pattern of CI compared to RRMS. In addition, there is conflicting data regarding the correlation between clinical and cognitive disability.
Objective: To investigate the differences of CI between PMS and RRMS patients, evaluating cognitive phenotypes. We also aimed to analyze the association between physical and cognitive disability with MRI measures of grey-matter atrophy and lesion burden.
Methods: Thirty patients with PMS and twenty-four with RRMS underwent neurological, neuropsychological (BRB-N, Boston Naming, and Tower of London), and MRI assessments (3T). Brain volume evaluations were performed using FreeSurfer. Principal Components Analysis on neuropsychological yielded six principal cognitive domains. Cognitive deficits were classified according to three categories: no CI, impairment in isolated cognitive domain, or impairment in combined domains.
Results: In the overall sample, the most frequently impaired cognitive domains were information processing speed (IPS) and visual memory. PMS patients had a higher prevalence of verbal memory and verbal fluency deficits, and more frequent impairment in combined cognitive domains compared to RRMS individuals. After multivariable regression analysis with clinical variables, EDSS was associated with most cognitive domains. Nevertheless, after including T1-lesion volume in the model, it was the most consistent predictor of cognitive performance. To further analyze the interaction between EDSS and T1-lesions, we performed GLM analysis with EDSS and T1-hypointense lesion volume as covariates, and T1-lesion volume adjusted better the model for verbal memory (p = 0.013), IPS (p = 0.021) and total number of impaired cognitive domains (p = 0.021).
Conclusions: RRMS and PMS patients tend to have a similar neuropsychological profile in general, but the extent of CI was greater in PMS patients. Worse cognitive performance was associated with increased physical disability, but this correlation was no longer significant after controlling for T1-lesion volume, suggesting that the underlying MS pathology might be involved in this relationship. Thalamic and T1-lesion volumes were the most consistent MRI predictors associated with cognitive disability.
CoI: multiple
Twitter: @gavinGiovannoni Medium: @gavin_24211
#MSCOVID19: round-2 a series of webinars
I would like to say thank you, thank you and thank you for your kind donations towards the Barts-MS coronavirus antibody study. With gift aid, we have now passed the £10,000 milestone and will be able to start the first phase of the study. This is great news.
To raise the additional money I won’t be running a double-marathon, but we have taken up your suggestion of hosting a series of webinars. We have not are not going to charge anyone as such for attending these webinars; instead, we will simply ask you to consider making a donation in kind towards our study.
“What is the real MS and why is it important to know the answer?” will be the first webinar, in a series of webinars, to raise funds for the Barts-MS Coronavirus Antibody Study.
This webinar will be delivered by Professor Gavin Giovannoni on Thursday 12th November 2020 from 17h30-18h30. The number of places is limited and will be allocated on a first-come basis. As a registrant, you are being asked to make a donation to support the Barts-MS COVID-19 Coronavirus MS Antibody study via our JustGiving page. The following is a short interview with main investigators explaining why this study is so important to people with MS.
CoI: multiple
Goldilocks
I am sure you have all read or heard a version of Goldilock’s and the three bears. Goldilocks finds one of the bears’ beds too hard, one too soft and the final bed is just right, which allows her to lie down and fall asleep.
At the moment the United States is having an existential crisis about the cost and value of its healthcare system. A series of articles in the New England Journal of Medicine (NEJM) is asking whether or not the massive amount of money that the US spends on healthcare is delivering good value for money. It is quite clear that the US is an outlier when you look at a simple integrator of population health outcome (see figure below).
At the same time that the NEJM is reflecting on the poor value that the US healthcare system delivers there are fundamental changes happening to healthcare delivery, which are being rapidly adopted because of the impact of the coronavirus pandemic.
As a person with a chronic disease is your MS being under-managed, over-managed or managed just right? Maybe you don’t know how to answer this question, because you don’t know what an ideal MS management pathway looks like.
A related issue is a fundamental battle been two ideologies that is currently playing out across the globe; the socialist European model of healthcare versus the neoliberal or capitalist US model of healthcare. Should the management of MS at a population level be value-based, i.e. based upon the utilisation of limited resources that deliver value by improving the length of life and/or increasing the quality-of-life experienced by a population of people with MS? This implies that the focus is on the population and not the individual.
Are these a topic worth discussing on this blog?
Eric Schneider. Health Care as an Ongoing Policy Project. N Engl J Med 2020; 383:405-408.
CoI: multiple
#MSCOVID19: the storm
I have been asked many times about how COVID-19 is affecting our MS research programme. The short answer is massively and its true impact is yet to be realised because we are a far way off from anything that feels and looks like normal. We are still paralysed by the threat of a second wave of COVID-19; the social distancing requirements within the NHS means everything is going to be at half-mast and then the knock-on effects on research funding have yet to be felt.
I am having sleepless nights about the covert threats of upcoming redundancies, whether or not our soft money will dry up, which we rely on to support administrative staff and prime research, how would one goes about declaring that you are academically bankrupt and then the massive increase in the teaching workload as we reconfigure all our teaching courses to go online. I have never worked harder and felt more unsettled than I do now.
A good example of COVID-19’s knock-on effects is our #ThinkHand campaign. For those of you who have been following this blog for years should remember it well. The central theme of the campaign ‘is not to write-off people with MS who have lost their lower limb function and are now having to use a wheelchair’. We have hypothesised and put forward a theory that MS is modifiable throughout its course and want to do clinical trials in people with advanced MS who are wheelchair users. The article by Timmermans and colleagues below shows that leg function declines earlier and quicker than arm function in MS, which supports our so-called ‘length-dependent axonopathy model of MS’.
Our #ThinkHand campaign started about 6 years ago and has resulted in the design and funding of two clinical trials targeting advanced MS. ORATORIO-HAND will be testing ocrelizumab in advanced PPMS (i.e. up to an EDSS of 8.0) and CHARIOT-MS that will be testing oral cladribine in advanced MS, including subjects with either SPMS and PPMS with an upper EDSS cut-off of 8.5. In both these trials, we will be using the 9-hole peg test as the primary outcome. The initiation and/or recruitment of subjects for both these trials have been suspended for the last 4 months and is unlikely to restart for another 2-3 months and maybe longer. We are talking about 6 months or more in COVID-19-related delays. If ‘Time is Brain’ or in the case of these trials ‘Time is Loss of Hand Function’ then these delays may mean that many pwMS will have progressed beyond the eligibility cutoffs for these trials.
We are not the only ones that have been affected and maybe it doesn’t help complaining. A very good friend of ours has cancer that is potentially terminal; as a result of COVID-19, her potentially life-saving surgery has been delayed by over 3 months. This week’s BMJ highlights the plight of cancer patients in the NHS and suggests that COVID-19 may result in 45,000 excess cancer deaths. What is the equivalent figure for people with MS? Will it be 10,000 people with MS lose their independence because of the progression of their MS and loss of upper limb function? Or 8,000 people with MS become unemployed because of worsening disability are a result of subclinical worsening cognition?
My philosophy is to simply get up each morning and try and get on with the task at hand. My motivation comes from an unusual source; a book “The Boy, the Mole, the Fox and the Horse” that my wife gave me at the beginning of lockdown. The quote that sums up the right attitude is the one about storms.
“What is the best thing you’ve learnt about storms?”
“That they end”, said the horse.
Timmermans et al. Ten-year disease progression in multiple sclerosis: walking declines more rapidly than arm and hand function. Mult Scler Relat Disord. 2020 Jun 26;45:102343.
Background and aims: From a clinical perspective there is a difference in the decline of arm and hand function and leg function in patients with multiple sclerosis (PwMS). Therefore, this study investigated the course of walking and arm and hand functions in PwMS over the first 10 years after diagnosis, including whether any function declined earlier or faster.
Methods: A long-term prospective follow-up study of an incidence cohort of 156 patients with a definite diagnosis of MS, either non-relapse onset (n=28) or relapse onset (n=128) type. Participants were systematically examined immediately after definite diagnosis, at 6 months, and at 1, 2, 3, 6 and 10 years. Walking was determined with the fast 10-meter timed walk test (10mTWT), arm and hand function with the Action Research Arm test (ARAT) and the nine-hole peg test (9HPT). The 10-year trajectories of walking and arm and hand functions were compared using standardized z-scores.
Results: From 3 years onwards the z-scores of the arm and leg function were visually diverging, with a trend towards significance at 6 years, and at 10 years the 10mTWT z-score is significantly higher than the 9HPT. This difference is more pronounced in non-relapse onset patients than in patients with relapse onset type MS, but present in both groups over the first 10 years. In the non-relapse onset group a difference in z-scores at 10 years post-diagnosis between the 10m TWT and 9HPT was found of -12.94 (95% confidence interval (CI) -20.2 to -5.73) for the right and -10.14 (95% CI -17.3 to -2.93) for the left hand. In the relapse onset group there was a difference at 10 years post-diagnosis of -2.17 (95% CI -3.75 to -0.59) for the right and a difference of -2.29 (95% CI -3.87 to -0.71) for the left hand.
Conclusion: This is the first longitudinal study that shows that walking declines earlier and more rapidly than arm and hand function in patients with MS. These results give important insights that can be linked to the pathophysiological disease process regarding the ascending order of deterioration in patients with MS.
Giovannoni et al. Is multiple sclerosis a length-dependent central axonopathy? The case for therapeutic lag and the asynchronous progressive MS hypotheses. Mult Scler Relat Disord. 2017 Feb;12:70-78.
Trials of anti-inflammatory therapies in non-relapsing progressive multiple sclerosis (MS) have been stubbornly negative except recently for an anti-CD20 therapy in primary progressive MS and a S1P modulator siponimod in secondary progressive MS. We argue that this might be because trials have been too short and have focused on assessing neuronal pathways, with insufficient reserve capacity, as the core component of the primary outcome. Delayed neuroaxonal degeneration primed by prior inflammation is not expected to respond to disease-modifying therapies targeting MS-specific mechanisms. However, anti-inflammatory therapies may modify these damaged pathways, but with a therapeutic lag that may take years to manifest. Based on these observations we propose that clinically apparent neurodegenerative components of progressive MS may occur in a length-dependent manner and asynchronously. If this hypothesis is confirmed it may have major implications for the future design of progressive MS trials.
CoI: multiple
Parallel Universes
I attended an online meeting yesterday and gave my usual talk on why the MS community needs to change its worldview from MS being a “clinico-radiological” entity to being a “biological disease”. There are many reasons for doing this but an alternative MS worldview will allow us to (1) diagnose MS earlier, (2) start treatment earlier, (3) define prevention strategies targeting very early MS or the at-risk, (4) stop MS being considered two or three diseases, (5) develop combination therapies for smouldering or the real MS and (6) to manage MS more holistically.
If we think about MS from a biological perspective rather than a clinical (relapses) or MRI (new lesion) perspective then we will not be lulled into a sense of false security that we are on top of this disease or be surprised when patients who are apparently disease-activity free become secondary progressive.
One of the participants and respected colleague asked me what will it take to get the MS community to accept the biological definition of MS and to move away from the clinico-radiological view of the disease. I tried to answer the question but failed horribly.
On reflecting on my inability to answer this question I realised that I have probably been trying to do this, i.e. redefine MS, for decades and have failed. My research, traditional communication channels (journals, congresses, etc.) and new media platforms (blogging, social media, etc) are clearly not working.
Maybe the solution is to create a parallel MS universe, i.e. set-up an alternative committee to redefine the disease. This ‘New MS Definition Committee’ would use sound philosophical principles to define MS, avoid the diagnostic tautology that underpins the McDonald criteria, and include definitions that are underpinned by biology. We can then retrospectively validate these criteria on existing data sets, refine the criteria (feedback loop) and then set-up prospective studies to validate the criteria. Yes, validate them, i.e. establish the sensitivity and specificity of the criteria and to then establish how they perform in high, intermediate and low prevalence regions of the world. What clinicians and researchers need to know is the positive and negative predictive value of the criteria in their clinics. You will be surprised by how much incorrect diagnoses or misclassifications affect research outcomes (more on this later).
This parallel MS Universe will have to include a different research and education agenda to challenge the current dogma. And will have to generate a few creative memes (infectious ideas) and policy to speed up adoption.
I wonder how many of my colleagues would want to join this parallel Universe? Is the status quo tenable? The motivation for doing this is to improve outcomes for people living with MS and to prevent the next generation of people getting MS.
CoI: nil
No patient with secondary progressive MS should be left behind
It was a privilege to be asked to write the foreword to a new policy document, “The Forgotten Many: A 2020 Vision for Secondary Progressive Multiple Sclerosis” dealing with more advanced MS. If you get a chance please read the document.
The ‘forgotten many’ is how people with secondary progressive or advanced multiple sclerosis (SPMS) describe themselves. SPMS has a significant impact on those with the disease, their families, the NHS and society overall.
The lack of efficacy of many of the licensed treatments for the relapsing forms of MS has left people with SPMS with the impression they have a second, different, untreatable disease. Telling someone they have SPMS is not too dissimilar to telling someone they have a terminal illness. For this reason, many healthcare professionals steer away from having this awkward conversation. For those people on a Disease-Modifying Therapy (DMT) for relapsing MS, disease progression conjures up fear that a diagnosis of SPMS will mean them having to stop their treatment.
A further issue is that many people with SPMS are discharged from regular neurological follow-up to local community-based services and their general practitioners to manage any problems. This is despite emerging evidence that aggressive management of MS-related comorbidities and lifestyle interventions can improve MS outcomes. So many people with progressive MS are smouldering away in the community thinking they have an untreatable, but relentlessly progressive disease.
A new report challenges this assumption and makes the case for actively managing and treating people with SPMS. However, to do this there is an urgent need to expand MS services and to develop new MS centres to accommodate these forgotten patients.
The emergence of treatments to treat and modify the course of progressive MS will require a retooling of MS centres and services; an increase in MS neurologists and specialist nurses, more dedicated MRI time for monitoring patients and additional ancillary services to address the massive unmet need associated with patients who have greater disabilities and associated comorbidities.
This report touches on the many facets of managing SPMS and the forgotten many and how we need to find them and offer them a holistic service to improve their quality of life, improve their neurological outcomes and at the same time reduce unnecessary and preventable utilisation of healthcare services. This report is a call to arms for parliamentarians, policy makers, NHS Providers, commissioners as well as the MS community to think differently, work differently and to now reconnect with the forgotten many.
No patient with secondary progressive MS should be left behind.
CoI: multiple
no patient should be left behind
As America burns and the #BlackLivesMatter campaign goes global and spreads to the UK people of colour have been asking white people to say something. The quote Megan Markle “….. the only wrong thing to say is to say nothing”. At the same time, my eldest daughter is adamant that keyboard activism is wrong; “it easy to type and post something to social media”, she says “but it much is harder to something proactive and sincere”. As a secondary school teacher in a state comprehensive school in South London where a lot of her students have social problems and come from a BAME (black, Asian and minority ethnic) background, she has the moral high ground.
This discussion reminds me of a stinging criticism we at Barts-MS had from a person who was then working in a very senior position for one of the MS charities in the UK. She said that Barts-MS pandered to the rich, white, educated, middle-class person with MS, who came to our centre to get what they wanted and that we were neglecting our local population of patients who were much more needy. She claimed we had an unconscious bias against BAME (black, Asian and minority ethnic) patients with MS. This was a stinging attack on our MS service.
I am acutely aware of unconscious bias in healthcare and her criticism hurt. For example, a very prestigious neurorehabilitation centre refused to publish an audit in the early naughties, which showed that people from upper-income groups (socioeconomic classes 1 & 2) were massively overrepresented in their unit compared to patients from lower socioeconomic classes. How and why unconscious biases creep into healthcare are well studied and understood, but to be accused of it yourself was sobering.
To counter the criticism against Barts-MS, which serves the most diverse population in London and arguably in the UK, we decided to do an audit of the patients on disease-modifying therapies in our centre. We argued that if we did have unconscious biases that favoured the well-educated and rich white middle classes they would more likely to be on higher efficacy DMTs than the less well educated, poorer local patients under our care. We felt somewhat vindicated when we showed that within our service socioeconomic class did not predict a person’s likelihood of being on any particular tier of DMT. In other words, if you get into our service regardless of who you are we will treat you the same.
The exercise of doing this audit also triggered a deep desire in me to find out more about the social determinants of health (SDoH) and how they impact on MS outcomes. I have spent the better part of 5 years studying the SDoH, which has led to our #ThinkSocial campaign, our social capital research projects and for a SDoH workstream to be a part of our Raising-The-Bar initiative. Our motto is ‘no patient should be left behind’ and we mean it when we say it.
In fact, I may have developed a conscious bias in favour of BAME patients with MS. As BAME patients with MS have a worse prognosis they are often given a worse prognostic profile, which results in us steering them towards higher efficacy therapies. The patient I described yesterday, who I am now fast-tracking through diagnostic tests despite the COVID-19 restrictions on our service, is being driven by the fact that he comes from a BAME background. I am now questioning myself if this patient happened to be white would he be getting the same treatment approach from me? I sincerely hope so.
Saúl Reyes et al. Socioeconomic Status and Disease-Modifying Therapy Prescribing Patterns in People With Multiple Sclerosis. Mult Scler Relat Disord. 2020 Feb 24;41:102024.
Aims: To examine the association between socioeconomic status (SES) and disease-modifying therapy (DMT) prescribing patterns in people with relapsing-remitting multiple sclerosis (pwRRMS).
Methods: A cross-sectional analysis was conducted among pwRRMS treated with a DMT in the neuroinflammation service at The Royal London Hospital (Barts Health NHS Trust). Study data were collected between July and September 2017. SES was determined by patient income and education extracted from the English Index of Multiple Deprivation. Based on their efficacy, DMTs were categorized as moderate efficacy (Glatiramer Acetate and Beta-Interferons), high efficacy (Cladribine, Fingolimod and Dimethyl Fumarate) and very-high efficacy therapies (Natalizumab and Alemtuzumab). Multinomial logistic regressions were performed for univariate and multivariate models to assess differences between SES and DMT prescribing patterns.
Results: Treatment consisted of moderate efficacy (n = 76, 12%), high efficacy (n = 325, 51.3%) and very-high efficacy therapies (n = 232, 36.7%). Medians for income and education deciles were 4 (IQR 3-7) and 6 (IQR 4-8), respectively. After multinomial logistic regression analysis, patient income was not associated with increased odds of being treated with high efficacy (OR, 0.92; 95% CI, 0.82-1.04; p = 0.177) or very-high efficacy DMTs (OR, 0.95; 95% CI, 0.85-1.06; p = 0.371). Similarly, patient education was not associated with being treated with high efficacy (OR, 0.91; 95% CI, 0.80-1.03; p = 0.139) or very-high efficacy therapies (OR, 0.92; 95% CI, 0.81-1.04; p = 0.188).
Conclusions: SES was not predictive of DMT prescribing patterns in pwRRMS. Whilst this appears reassuring within this universal health care setting, the same methodology needs to be applied to other MS services for comparison. Data could then be further interrogated to explore potential socioeconomic inequities in DMT prescribing patterns across the UK.
CoI: multiple
#MSCOVID19 info wars
It is one thing calling for scientists to turbocharge the development of a coronavirus vaccine but quite another to get the population to have the vaccine. The anti-vaxxers are organising rapidly and have started circulating content with false information to achieve their aims. The movie plandemic is one example and is covered in a very good article in the New York Times today.
The primary reason I started this blog was to counteract anti-science movements and to provide people with MS and their families a rational interpretation of MS-related research. It is interesting to note that there is now good data science to show how anti-science movements, despite having very few initial supporters, get their message across and sow enough confusion to get undecided people to support their movement.
What I find fascinating, albeit scary, is how dynamic and multifaceted the anti-vaccination campaigns are, which explains their explosive growth in recent times (see figure and paper below). It also shows how gullible people are in general. The study below highlights why we scientists need to fight back using the same tactics. Simply sitting in our ivory towers using traditional media and unidirectional channels will not be good enough to fight the anti-vaccination and other anti-science movements.
I have a vested interest in this. One of our lines of research is to use an anti-EBV vaccine to prevent MS. If people don’t want vaccines how are we going to get this prevention strategy adopted by funders, ethics committees and more importantly the general population?
Can you help? Yes, please help fight fake news, by reporting it and calling it out for what it is. And don’t believe the fabricated conspiracy theories that are peddled to support these anti-science movements. The vast majority of conspiracy theories are wrong.
Johnson et al. The online competition between pro- and anti-vaccination views. Nature published: 13 May 2020
Distrust in scientific expertise is dangerous. Opposition to vaccination with a future vaccine against SARS-CoV-2, the causal agent of COVID-19, for example, could amplify outbreaks, as happened for measles in 2019. Homemade remedies and falsehoods are being shared widely on the Internet, as well as dismissals of expert advice. There is a lack of understanding about how this distrust evolves at the system level. Here we provide a map of the contention surrounding vaccines that has emerged from the global pool of around three billion Facebook users. Its core reveals a multi-sided landscape of unprecedented intricacy that involves nearly 100 million individuals partitioned into highly dynamic, interconnected clusters across cities, countries, continents and languages. Although smaller in overall size, anti-vaccination clusters manage to become highly entangled with undecided clusters in the main online network, whereas pro-vaccination clusters are more peripheral. Our theoretical framework reproduces the recent explosive growth in anti-vaccination views, and predicts that these views will dominate in a decade. Insights provided by this framework can inform new policies and approaches to interrupt this shift to negative views. Our results challenge the conventional thinking about undecided individuals in issues of contention surrounding health, shed light on other issues of contention such as climate change, and highlight the key role of network cluster dynamics in multi-species ecologies.
CoI: we are planning to do an anti-EBV vaccine study to prevent MS
#MSCOVID19: musings from the frontline
Are we in danger of dropping the ball?
I am enjoying doing general medicine again but the majority of the patients under my care on an acute medical ward have social problems. Social problems that either got them into the hospital in the first place and/or social problems that are now preventing them from being discharged.
My brief sojourn into general medicine highlights why the social determinants of health are by far the largest determinants of health-related outcomes at a population level. Interestingly, social determinants of health, or the health gap that Michael Marmot refers to, is also playing out in the COVID-19 patients. Social deprivation not only increases your chances of getting COVID-19 but the economic fall-out of the lockdown will be felt by the poorest more than those of us who are better off.
If you have a social conscience I would urge you to read the report ‘From pandemics to poverty Hotspots of vulnerability in times of crisis’, by Vidya Diwakar from the ODI.
Another thing that strikes me is the unnecessary complications several of our non-COVID-19 patients are experiencing because of delays in their treatment. I have one patient who was meant to be treated with cyclophosphamide in mid-March for a so-called CNS vasculitis (inflammation of the blood vessels of the walls of the brain) who has recently been admitted in crisis. Several delays have occurred because of the COVID-19 epidemic. The consequences of this delay are potentially catastrophic for this patient. COVID-19 is not a reason to delay urgent medical treatments. I suspect the same thing is happening to people with MS, with potentially catastrophic consequences.
If you have highly active MS and you need aggressive control of your disease you probably need it sooner rather than later. Time is brain whether or not there is a COVID-19 pandemic. The risks of COVID-19 to individual patients who are immunosuppressed can be managed with self-isolation and shielding. In addition, I am not convinced outside of possibly acute treatment with HSCT or alemtuzumab that our immunosuppressive therapies carry much of a risk to pwMS. In fact, the more real-life data I see the more I am reassured that pwMS on licensed immunomodulatory and immunosuppressive MS therapies seem to be weathering the storm of COVID-19 rather better than expected.
The problem we have is that MS services have been halted or are been run by a skeleton staff with no capacity to treat MS actively and aggressively. I think we have been complicit in the government’s shutdown of routine services that provide important time-dependent treatment and care for patients with chronic conditions such as MS.
It is looking increasingly likely that we have over-resourced the management of COVID-19 patients at the expense of patients with other diseases. I predict that when the dust settles there will be many more deaths as a consequence of reconfiguring the NHS to deal with COVID-19 than there will be from severe COVID-19 itself. I am told that the London paramedics have seen a six-fold increase in calls for deaths at home during the lock-down compared to average. The question I ask is how many of these deaths could have been prevented if it wasn’t for the COVID-19 epidemic? Few people will die from MS, but how many pwMS will end up being more disabled because of COVID-19?
It is interesting how COVID-19 lock-down exit strategies are now dominating the news cycle. China who is relaxing its lockdown has just reported a flare-up of new cases, which is what happened in Singapore. This is the problem that now faces the UK and other countries.
We have quarantined a large number of vulnerable people including pwMS for several weeks and we now want to relax the lockdown with the risk of more infections and the potential exposure of high-risk people to the virus. Without widespread testing, contact tracing and repeated local lockdowns, relaxing the rules on social distancing is a risky exit strategy. I assume allowing the gradual spread of the virus through the general healthy population, whilst shielding the vulnerable is the covert or not so covert plan of the UK government. Eventually, this strategy will lead to sufficient herd immunity to allow the vulnerable back into society. The problem with this strategy is that it will be leaky and there will be an excess number of deaths. This shows you why governments are so edgy when asked what strategy they are pursuing. I am not sure that most have decided yet, which is why they are keeping both options open at present. What we really need is some certainty or an effective antiviral agent or a vaccine that works. The only way we are going to deliver on these is to invest in science and trust that as always scientist will innovate and get ourselves out of the mess we now find ourselves in.
I am interested to hear from you whether or not you feel the treatment of your MS is being compromised and whether or not you consider yourself vulnerable and, finally, what strategy you would like the government to adopt.
CoI: multiple