Category: News and events

I’m so sorry

Barts-MS rose-tinted-odometer:  zero-★’s (Black Monday #000000)

I heard last week that one of my patients sadly succumbed to COVID-19. This is not the first person with MS to die of COVID-19 but is a reminder of how fickle life can be. I have contacted my patient’s partner to say how sorry I am. The question I am asking myself is; could this death have been prevented? Yes, almost certainly. However, I suppose this answer applies to all COVID-19 related deaths. 

Although the official global death toll from COVID-19 is 4.6m the unofficial estimate is 15.2m (95%CI 9.4m-18.2m), which means most of us will know someone who has died of COVID-19 (see The Economist; The pandemic’s true death toll, 5th Sept. 2021).

We should count ourselves lucky in the UK because we have a very high vaccination rate that has clearly reduced the number of people getting severe COVID-19 and dying from COVID-19. Sadly, however, being double-vaccinated is no guarantee of protection. Data from Public Health England (PHE) reveals that of all the people who died within 28 days of testing positive for the delta variant between 1 February and 19 July, 49% (224) had had two vaccine doses; almost all of these people, 220, were aged 50 or older (Public Health England. Investigation of SARS-CoV-2 variants of concern: technical briefings. 23 July). 

What does this mean for pwMS? This means we are not out of the woods yet. Please remain vigilant and careful. This particularly applies to those of you who have not been vaccinated and those on an anti-CD20 or S1P-modulator, in whom vaccine responses are likely to be blunted. People with MS are being classified by the government as being vulnerable and hence you will be offered a booster dose later this year. 

For those of you who have lost a loved one to COVID-19, there is a very good series of articles in this week’s BMJ on grief and grieving, which I recommend you read. Lucy Selman’s essay touched a raw nerve when I read it and many of the issues she discusses are particularly pertinent to how I am feeling this morning. It is hard, harder than you think, being a healthcare professional during the pandemic.

Lucy Selman. Covid grief has cracked us open: how clinicians respond could reshape attitudes to bereavement. BMJ 2021; 374 doi: https://doi.org/10.1136/bmj.n1803 (Published 10 August 2021)

Excerpts: 

……. For people working in healthcare, grief brings home the ultimate futility of medicine as a lifesaving endeavour. Despite the best efforts of doctors, we all eventually die. Grief teaches us that medicine is about so much more than extending life.

…… Accommodating the ubiquity of sadness, loss, and grief makes some separation and compartmentalisation seem inevitable, even a useful coping strategy, for those who practise medicine. 

……. Clinicians are often encouraged or required, overtly or implicitly, to disregard and not talk about their own grief in the name of efficient patient care. Despite evidence of significant grief among clinicians, patient deaths are often not discussed.

…… But sequestering grief into the “private” realm outside of medical practice can have unintended negative consequences for clinicians and patients and their families, rendering us all more alone. Denying grief, hiding it away, hiving it off to a personal self, distinct from the professional, is to deny its place in life and to deny our humanity. In the context of a pandemic in which colleagues, patients, and loved ones have died, leaving no room at the table for grief renders life inauthentic.

…… Working with death and grief elides professional barriers. It urges us to bring our vulnerability with us, meeting the patient as a person but also, crucially, bringing our own person with us. That does not mean burdening patients with our own suffering or failing to maintain helpful boundaries. Rather, responding with compassion towards patients requires us to understand and respect our own need to process emotions.

……. Grief prompts us to consider how we treat ourselves as well as how we treat the person in front of us professionally. Being open about our own experiences of grief, and showing the strength of vulnerability, is a powerful statement to patients, carers, and colleagues that can help shift society’s attitude to grief. Individually, this can bring about a deepening and maturity of medical practice. Bringing the insights that grief affords into our professional and personal lives could have huge personal and societal benefits.

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. 

triMS.online wins top award

Barts-MS rose-tinted-odometer: ★★★★★★ (A golden 6-star Thursday, #d4af37)

The great news, our triMS.online conference won the industry Communiqué Award for ‘Excellence in Global Education Meetings/Stand-Alone Events’  last night. What started as an idea on this blog back in October 2016 became a reality in 2018 and is now hopefully a permanent fixture in the MS calendar. This was a real team effort and it is thanks to the dedication and commitment of the teams at Oxford Health Policy Forum and Oxford Pharmagenesis that this was possible. The common denominator to everything that I have been involved in that has been successful is good project management and the team at Oxford Pharmagenesis are by the far the most talented and professional team I have worked with. Thank you and well done. This is also the team behind the success of the ‘Brain Health: Time Matters‘ policy initiative.

A big thank you to the triMS.online steering committee who help with designing and implementing the different programmes. The founding principles of triMS.online were to increase global access to MS meetings, particularly for HCPs living in low and middle-income countries and at the same time to increase the diversity of speakers, particularly women, young people and people from ethnic minorities. This was acknowledged by the judges and I suspect was the main reason behind us winning the award. 

I also want to thank our Pharmaceutical partners who have sponsored these meetings. Without your support triMS.online would not have become a reality. 

Where to next? Because of the pharmaceutical code of conduct that does not allow pwMS to attend triMS.online we are creating a separate meeting for pwMS called PRISMS (patient reflections and insights in MS). Our first meeting is called ‘Shining a light on MS learnings from the COVID-19 pandemic’ and will be on Thursday 23 September 2021m 19:30 – 20:30 BST (14:30 – 15:30 EDT / 20:30 – 21:30 CEST). If you have not registered yet please do. 

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. 

MS at the limits 2021

Are you an HCP working in MS? These two meetings – yes they are face-2-face – may interest you. The feedback from the previous three meetings has been the best feedback I have ever seen for an academic MS meeting. More than 98% of attendees said they would definitely attend again, 100% of attendees said they would recommend it to colleagues and friends and the majority said they preferred the meetings to the large international meetings because of the intimate format of the meetings and the fact that there is a lot of time for discussion. As with so many things in life, less usually means more. If I can say so myself the programmes look very exciting and a time to look beyond COVID-19.

Please register online; HCPs and MS Nurses.

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. 

MS-MasterClasses-2021

Conflicts of Interest

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.

An existential crisis

Barts-MS rose-tinted-odometer: zero-★s

The Barts-MS blog is having yet another existential crisis.

Have you been to Speakers’ Corner on the Northeast point of Hyde Park in London? If you haven’t I would recommend visiting and spending an hour or so watching and listening. Speakers’ Corner is where anyone, who is anyone, can stand on a soapbox and speak their mind on any topic that takes their fancy. A Victorian version of the modern podcast, but only live. Another example of an early form of social media was pamphleting. The so-called pamphleting wars started in the 1600s shortly after the printing press. Individuals and Societies used pamphleting as a means of getting their message to people on the streets. Popular pamphleteers, dare I say early influencers, were Daniel Defoe, Thomas Hobbes, Jonathan Swift, John Milton, and Samuel Pepys.

Orator at Speakers’ Corner in London, 1974. (Image from Wikipedia)

I came across pamphleting when I was preparing my talk for James Parkinson’s memorial day and discovered that Parkinson used pamphleting as means to run political campaigns. Interestingly, Parkinson wrote under the pseudonym, ‘Old Hubert’, and was a prominent member of two campaigning societies for reforms at the time: the London Corresponding Society and the Society for Constitutional Information.

Another pamphleting example I discovered whilst researching diet was by William Banting, a portly Victorian gentleman, who discovered by deductive reasoning and trial and error that a low-carbohydrate-high-fat diet led to rapid and sustained weight loss. Instead of writing a book, he wrote a pamphlet and the LCHF diet is now eponymously referred to as the Banting Diet and the practice of being on his diet as ‘banting’. Tilly Tansy, a medical historian and colleague, refers to pamphleting as being the equivalent of Twitter in the pre-digital era.

I wonder what Georgian and Victorian Londoners would have thought about YouTube and vlogging, a very modern version of the Speakers’ Corner, and the new generation of influencers it has spawned? Surely they are the modern equivalents of James Parkinson and William Banting, except with more rapid global appeal.

What all social media platforms have in common is that they allow almost everyone a platform, be it writing (Twitter, WordPress, Blogger), pictures (Instagram, Pinterest), voice (podcasting), music (Soundcloud) or video (YouTube vlogging), to compete with each other and sometimes head-on with the traditional media.

I argue that social media is the ultimate expression of a mature democracy, which is why as a liberal I am extremely concerned about the mounting level of political interference in social media and the governance of the web. Censorship and loss of net neutrality are existential threats and should be resisted. This has come to the fore during the US 2020 Presidential election and more recently with the backlash against the anti-Vaxxers. 

A few years ago I was referred to at a public meeting as being an MS influencer. A modern term to describe someone who uses social media to influence the people who follow them. What makes one person become an influencer and stand out from the crowd is no different from a speaker on Speakers’ Corner who draws the biggest crowd. The most important characteristics are reputation, i.e. being trustworthy or honest, having standards and sticking to them, and being consistent. Another characteristic is novelty; being prepared to put your head above the parapet and not follow the crowds. You need to have something new to say or at least have a new spin on an old idea. The problem with this blog is that sometimes what one blogger writes is assumed to represent the opinions of the other bloggers on the site and the Barts-MS collective. This is clearly not the case and explains why we often disagree with each other. Do I really have to remind this audience that debate is healthy and that calling each other out over a bad idea is how science works?  

Very few ideas are original, but how you communicate them is key to novelty and stickiness. Stickiness is an adjective to describe how well ideas stick and are transmitted in society. Less is usually more when it comes to social media. Addressing an unmet need is also critically important. The unmet need, however, is in the eye of the beholder. You can’t please everyone so you need to define your audience and be careful not to stray off target. The real power of social media is its ability to segment the world; what is important to one person may be irrelevant to another. Having a narrative is another important component of successful social media influencers. In a world where eyeballs mean everything having a compelling story to tell often makes the difference. My daughters who are both digital natives only follow people who have a narrative.

From a personal perspective, an important part of using social media includes forced self-reflection and using it as a form of documentation; a modern version of a diary. By using social media to think aloud and develop my thoughts with feedback from my colleagues and followers allows me to be less rigid in my thinking, think more laterally and be more accommodating of other people’s ideas. Having a sounding board and a collective of thinkers can only help with the adoption of ideas and the impact they have on the wider world.

I am acutely aware that there are many critics of social media platforms and the new generation of influencers these platforms are producing, but this is usually out of ignorance of the historical role social media has played in society. Be it the speakers on Speakers’ Corner, the Pamphleteers on the streets of Georgian, London, or us Bloggers of today we are the underpinnings of an old and threatened political movement called liberalism.

Social media is a genre that should be championed and protected from the rising wave of populism and autocracy. There is currently a larger debate on whether or not social media platforms should be responsible for their content or are just providers of a platform for free speech.  Shortly after the US elections, Donald Trump’s account was suspended on Twitter and Facebook and Parler, the alt-tech microblogging and social networking service, was taken down by Amazon and its app was removed from both Apple’s and Google’s app stores. Parler was being used by Donald Trump supporters, conservatives, conspiracy theorists, and far-right extremists.  It is clear that correcting, then deleting and apologizing for offending content is not sufficient; critics want a mechanism in place to prevent the content from being posted in the first place. Apple has only just allowed Parler’s app back onto Apple’s store. “In a letter to two Republican lawmakers on Monday, Apple said Parler had made updates to its app and content moderation policy that would lead to it being reinstated”, BBC 6-April-2021.

Over the year’s this site has had its fair share of complaints. As it is not an official website of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust who is responsible for its content? Apart from several of us moderating comments from readers the actual posts of the individual bloggers, such as this one, are not edited or moderated by an editor. The content is the responsibility of the individual writers (see disclaimer below). Despite this and as a result of a recent complaint we, Barts-MS, are being asked to take responsibility for the blog’s content. Unfortunately, we don’t have the resources or the time to moderate each blog post.  

The analogy of this blog being a modern soapbox and the speakers using the soapbox having to take responsibility for their own words is not going to wash with our critics. So we have a dilemma. Do we make the blog an official publication with a board of editors who then take responsibility for its content? This will make the content boring and turgid. Do we censor and/or ban individual bloggers?  This will upset their loyal followers. Do we close down the blog and let each writer go their separate ways?  This will at least do away with the need for collective action. Any advice would be much appreciated.

This is not the first time this blog has had an existential crisis, however, it may be its last time. 

Conflicts of Interest

Preventive Neurology

Twitter

LinkedIn

Medium

Please note the content of this post is based on ‘Influencers’ a piece published by Professor Gavin Giovannoni on Medium on 18-March-2019.

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.

Under&Over: we need your help

Since being hit by a motorbike travelling at high speed and nearly losing my life or independence I now have personal experience of the value of physical neurorehabilitation. When I say #UseItOrLoseIt I really mean it. So if you have more advanced MS and are using a walking stick (EDSS 6.0) we want you to enrol in a #CitizenScience type study in which we are testing a new hand and arm activity called Under&Over to see if it can improve or maintain upper limb function. The study is titled: “Under & Over: A controlled study to develop an upper limb rehabilitation tool for people with Multiple Sclerosis.”

The Under&Over project is an extension of our #ThinkHand campaign, i.e. you are never too disabled to be treated with DMT and we are doing the O’HAND (ORATORIO-HAND) and CHARIOT-MS studies to test ocrelizumab and oral cladribine in people with more advanced MS with the primary outcome being the 9-hole peg test; an outcome measure of upper limb function. Under&Over is simply a form of upper limb exercise. However, to get the MS community to accept arm and hand rehabilitation as a treatment we need evidence from a controlled study. So without volunteers, without you, we won’t be able to generate the evidence to prove that we can protect upper limb function with exercise.

This study is now recruiting – find out more information on the study website.

This is part of our ThinkHand project which addresses the need for more resources, research and services to support upper limb function.

What is the purpose of the study?

The research is designed to find out whether repeated use of the Under & Over tool (pictured above) can improve upper limb function in people with MS. It is also designed to gather information about the long term use of the tool based on participants’ experiences and the use of a digital platform and community integration to support this.

Who can take part?

Men and women over 18 years can take part if:

  • You have a diagnosis of MS (more than 6 months)
  • You have internet access
  • You have an Expanded Disability Status Scale (EDSS) score of ≥6 as measured using the online WebEDSS
  • You understand and able to communicate in English

You will not be Eligible to take part if:

  • You are unable to use your hands because of pain or any other reason that might interfere with your ability to complete the intervention using the Under & Over device.

It is a fully remote study, so there are no clinical visits or examinations. All study resources are online or will be posted to your home. You just need to live in the UK.

A number of baseline questionnaires will gather initial data that we will compare with the same data gathered at the end of the study (cardboard 9 Hole Peg test, WebEDSS, ABILHAND questionnaire, MSIF and MSIS-29).

Following baseline assessments, everyone who agrees to take part in this study will be randomly assigned to one of two groups; one group will receive immediate intervention and the other group will receive the delayed intervention; this is called the wait-list control group. This means that they will receive access to the rehabilitation programme after a 3-month period.  This way everyone who participates in the study will eventually get access to the rehabilitation programme.

Contact for further information about the study:

If you would like further information, answer to any questions or queries and would like to express interest to take part please contact the Under & Over Research Team (underandover@qmul.ac.uk) and read the participant information on the study website.

#MSCOVID19: triMSx-online

You may remember that about 6 years ago the idea was germinated on this blog to launch an online version of ECTRIMS to reach people in low- and middle-income countries and to allow more women with family commitments to attend meetings. The other aim was to usher in the next generation of young MSologists; more women, younger people, more ethnic diversity and from all regions of over the world, i.e. not stale, pale and male 😉 Unfortunately, ECTRIMS didn’t want us to use the name OCTRIMS so we launched with the name triMS-online.

The concepts behind triMS-online have now been adopted, in part, because of COVID-19 by many other conference organisers. However, we think we have something special and we are not just trying to duplicate the face-2-face 3-5 day conferences the other platforms are doing. Since launching triMS-online we have extended the concept into standalone themed meetings with single sponsors. These meetings are to address specific unmet needs and hot topics.

The next triMSx-online meeting, which is being held this evening and tomorrow evening, is covering COVID-19 vaccines and their relevance to MS. If you have not registered please do so now. Don’t worry if you can’t watch it live the talks will be recorded and available via the triMSx-online portal for asynchronous viewing. In addition, we will be also doing a podcast on the meeting for you to listen to in your own time.

COVID-19 and MS: where are we now and where next?

8 and 9 April 2021
19:00–19:45 BST I 14:00–14:45 EDT I 20:00–20:45 CEST

CoI: multiple

Rehab update: taking back control

Barts-MS rose-tinted-odometer: ★★★★★

After my life-threatening accident last year I returned to work on the 1st of February against the advice of many people. I thought getting back to work would help with my overall rehabilitation. Yes, in the sense that commuting to work and adapting my exercise programme to fit in with my workday would help my recovery. But no in the sense that my energy levels, both physical and mental, are nowhere near back to normal and hence my productivity or outputs remain low. As a result of my early return to work, I have not been focusing on my rehabilitation as much as I should have been; I have gone from doing 3 hours a day of rehab to maybe 3 hours a week. This is simply not enough for me to get back to normal. 

It also became apparent to me that I can’t simply continue with the same-old and therefore something had to give. When I looked at my diary last week I realised I had no white space in it, i.e. big chunks of time for thinking, writing and taking on big projects such as our preventive neurology initiative.

I have therefore decided to reconfigure my academic work-life to re-engage with my physical and mental rehabilitation and to focus primarily on preventive neurology, in particular, MS prevention. So far I have resigned from 14 (and counting) MS-related initiatives I was involved in. My resignation from each is not about the individual initiatives but the gestalt and creating the necessary white space in my life for big projects. 

As I will be focusing less on clinical issues and more on basic science and MS prevention I will be writing far fewer blog posts and answering fewer questions. I will keep you posted on how things evolve. The good news is that I have managed to start jogging albeit up-and-down the corridor outside my office. My ambition is to complete a parkrun, which is 5km, before the 21st of June.  

https://platform.twitter.com/widgets.js

CoI: multiple

Twitter: @gavinGiovannoni                                              Medium: @gavin_24211

MS and the Inverse Care Law at 50

Barts-MS rose-tinted-odometer: ★

Variation in access to good medical care and better outcomes has never been higher in high-income countries such as the UK. Variation is simply a euphemism for inequality. The MS community in the UK realised this a few years ago, which prompted us to launch our ‘Raising the Bar’ initiative to address inequality in access to healthcare for people with MS living in the UK.

With this as a backdrop, it is worth reflecting on the 50th anniversary of the publication of  Julian Tudor Hart’s paper “The Inverse Care Law”, which was published in The Lancet on the 27th Februrary 1971. The article opens with the following lines: 

“The availability of good medical care tends to vary with the need for it in the population served. This inverse care law operates more completely where medical care is most exposed to market forces, and less so where such exposure is reduced.”

The Lancet is celebrating the 50th anniversary of the publication of Hart’s seminal paper with a hard-hitting editorial, which I would urge you to read. 

Editorial. 50 years of the inverse care law. Lancet 27th Feb 2021.

Excerpts:

…. Globally, letting market forces dictate health care is still a major contributor to inequity—private health care can only be accessed by those who can afford to pay.

….. In many countries, social care and long-term care are managed by private providers too. 

….. Although health care is widely endorsed as a basic human right, the systems that provide it inequitably embody capitalism at its worst, where the wealthy benefit, leaving behind those most in need.

What are we trying to do with our ‘Raising the Bar’ initiative? We simply want no patient with MS to left behind. Our programme of activities has coalesced around five main workstreams. 

(1) The ‘Data & Audit’ workstream is focusing on measuring the wide variation in MS services in the UK. We hope the data will then be used as a catalyst for change, i.e. new business cases for service development.

(2) The ‘Patients as partners’ workstream is the improve health literacy amongst pwMS;p to help them navigate the NHS. There is compelling data showing that people with chronic disease who are engaged with their disease and its management do better, both in terms of health outcomes and improved quality of life. Similarly, when it comes to self-monitoring, self-management and behavioural interventions, which will be essential to transform MS outcomes we will need pwMS to become true partners in raising the bar.

(3) The ‘Wellness, lifestyle & social determinants of health’ workstream is promoting the holistic management of MS. This workstream focuses on wellness and lifestyle interventions to maximise brain and physical health. This workstream is also working on ways the MS community can address the social determinants that dominate health outcome in other disease areas; we are sure it is no different in MS.

(4) We acknowledge that if we want no patient to be left behind we are going to need a new generation of leaders; people with the vision, energy and drive to make the changes necessary to make our MS services equitable and valuable. This is why we have launched a ‘leadership programme’ to provide HCPs working in MS with the necessary leadership skills. Yes, not everybody is born a leader. Effective leadership skills need to be learnt. 

(5) Finally, we have a workstream that addresses UK infrastructure such as ‘national registers and research’ studies that will provide the evidence base to change or implement new practices across the country. 

So if you are a healthcare professional working in MS you need to please join the MS Academy and become a part of our raising the bar initiative. With the waning of the COVID-19 pandemic the NHS promises to be more responsive to innovation, more inclusive and wants to address both inequality and it causes. I think there is no better time than now to make a difference. 

If you want to hear more about what we are trying to do please log into the MS Trust’s virtual conference. In the Q&A session tomorrow afternoon we will be addressing many of these issues.

The following are my discussion points for my brief 10-minute introduction.

CoI: multiple

Twitter: @gavinGiovannoni                                              Medium: @gavin_24211

Prof G’s final update

Barts-MS rose-tinted-odometer: ★★★★★

Despite posting an update on my progress just a few weeks ago I am still getting daily texts, emails and social media messages about how my rehab is going. So here is my final update.

Once you are over the initial 4-6 weeks after polytrauma things, at least in terms of improvement, slow down a lot. So not much has actually changed in the last three weeks since my last update on the 22nd of January. 

I was clearly overdoing it and yes I admit you told me so. When I had an x-ray of my pelvis a few weeks ago the fracture of my left superior pubic ramus was not healing. Probably because I was doing too much exercise, which was causing some movement at the fracture site and non-union. I have been advised not to do anything that makes the pelvic pain worse.

I weaned my anti-inflammatories only to find that were masking a lot of my pelvic pain. As a result, I have dramatically cut down on my walking, stopped using the exercise bike for cardio work-outs and I am limiting my lower limb exercises to those that aren’t painful. 

Things were going well until I volunteered to be a pallbearer at our friends funeral on Monday; the additional weight-bearing strain on my fragile pelvis has made my pelvic pain a lot worse. So much so that I had to restart my anti-inflammatory medication this week. 

The good news is that I am continuing to notice and improvement in the range of movement in my right or injured hip. I still have limitations with hip flexion and internal and external rotation of the hip. Any rapid movements in the hip, particularly flexion when the hip is externally rotated, is very painful. I have worked out that this likely to be due to activation and contraction of the pectineus muscle that is attached to the superior pelvic ramus where my fracture is. Could this be one of the muscles that are causing my fracture line to move ever so slightly and delaying it from healing? As a result of the pain, I now walk with a noticeable, albeit a slight, limp. In neurology jargon, we call this an antalgic gait. 

My major concern is whether or not I will be able to run again. I was told by my orthopaedic surgeon not to attempt running for at least 6 months, which will take me to May. I really can’t imagine a life without running, but who am I to complain when so many of my patients with MS have had to resign themselves to never being able to run or even walk again. I think I am beginning to understand the mental toll MS places on people when they realise their physical and mental disabilities are worsening. 

During the accident, I had a hyperextension injury of my left ring and middle fingers. This injury is now causing me a lot of trouble with swelling of the interphalangeal joints of both these fingers and the beginning of hyperextension-flexion contractures in these figures. I suspect the latter is due to an imbalance in power between my forearm muscles and the intrinsic muscle of my left hand. Yes, I still have mild weakness in my C7 and C8 innervated muscles of the left arm. The imbalance on power causing clawing of the fingers is a common mechanism that afflicts many people with peripheral nerve problems. The good news is that my muscle strength is returning slowly, particularly around my shoulder and scapular, for example, the winging of my scapular has almost resolved. I hope my finger deformities improve as well.

The most recent CT scan of my cervical spine shows my vertebral fractures are healing well. I am not using a neck brace, but still have stiffness and pain in my neck, particularly when I move it quickly. My stamina in terms of sitting and standing is improving and I can now manage about 6 hours before needing to rest my neck muscles. I have reclining chairs with headrests in both my offices at work and at home. Another reminder that you need to have resources, essentially money, to ensure you can return to work with equipment that allows you to function without too much pain. 

I am now back at work doing remote clinics, catching-up on teaching tasks and generally doing what I used to do, however, all at a much slower pace. My physiotherapist has adapted my exercise programme so that I can do most of my exercises, at least my upper body exercises,  in my office during the day and has truncated the programme to make it less time-consuming. I am still sticking to the programme in the hope I will get back to normal. 

My attention and concentration are still relatively poor. I am having problems tackling big creative writing tasks. As a result, I am not nearly as productive as I should be. However, things are improving and I feel that by being back in my office, without distractions, I am achieving a little more each day. Yes, I am back doing endless zoom calls.  

Overall my attitude remains positive; I still feel lucky to be alive without a major disability. I also realise how privileged I am to be able to afford private rehabilitation and to be able to purchase the necessary equipment for my rehabilitation. As ever I am grateful for living in a country where universal healthcare is a basic human right. The NHS is such an extraordinary institution, which most of us take for granted. I would urge you not to take it for granted; you only have to look around the world to understand why the NHS and its staff need attention and care. 

Finally, can I please make this the last update for the next three or four months? As far as my clinical and academic activities go I am back working full-time and want to be treated as such. You will find me saying no to a lot of things mainly because I have reset my priorities. If I ever do another update it will be when I am back running again, or not.

CoI: multiple

Twitter: @gavinGiovannoni                                              Medium: @gavin_24211