Category: News and events

Virtual MS Trust Conference 2021

If you are a jobbing MS Health Care Professional, i.e. on the coalface of MS care, then the annual MS Trust conference is the place to be. The range of topics, talks and issues that will be discussed in a pragmatic and clinically relevant way make this the one meeting to attend this year (28th Feb to 2nd March 2021). Please click on the link to register.

Due to COVID-19, the 2020 meeting was cancelled and this year’s meeting is going online. This will allow you to attend from the comfort of your office or home and will allow you to dip into the content remotely in your own time.

Click here to register!

CoI: I am biased as I am talking at the meeting. I have always felt the MS Trust Annual Conference, which is the only UK conference dedicated entirely to MS and its management, that all MS HCPs should attend. Sadly, too few neurologists do; if neurologists did attend I think MS services in the UK would be in a much better place.

What is the most exciting MS research on the horizon?

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

#MSCOVID19: moral distress

Barts-MS rose-tinted-odometer: zero stars

A dear and very close friend of my wife and I tragically passed away from inoperable cancer two weeks ago.  She sadly died alone in hospice with no family members by her side to comfort her. She is one of the many collateral deaths that have occurred due to COVID-19. From the time she got symptoms to suggest her cancer had returned in late April last year, it took almost four months before she was examined under anaesthesia when it was found her tumour had grown and spread to such an extent that it was then inoperable. Three to four months is a long time in the natural history of highly malignant and invasive cancer. The delays in her management were directly due to the COVID-19 lockdown and reconfiguration of oncology services to cope with the first wave of the pandemic. Pre-COVID-19 she would have been seen and managed within weeks and would almost certainly be still alive today; maybe not cured, but with enough life in her to witness her youngest daughter turn twenty-one.  

In cancer the outcome is black and white; survival or death. In MS the outcomes are more subtle and nuanced. How long is too long in the course of a disease that last decades? Saying this I have a collection of patients who I follow when relatively small delays in diagnosis and treatment have major and rarely catastrophic consequences for the individual. Occasionally a spinal cord relapse can leave someone wheelchair-bound or result in loss of bowel, bladder or sexual function. 

Image from the Catholic Health Association

It is clear that fewer new patients are being referred to our MS service. Where are they? I doubt COVID-19 is preventing MS. A better explanation is that people are sitting on neurological symptoms that in normal times would prompt a referral to a neurologist and a diagnostic work-up. Even if patients are being referred into neurology services they are being seen and assessed virtually and are waiting for MRI scans, evoked potential and other non-urgent diagnostic investigations. These have been suspended until the current COVID-19 surge settles and neurology staff are de-deployed back to neurology. Even if some patients are seeing private neurologists and being diagnosed with MS outside the NHS they still have to wait to access DMTs on the NHS. 

This is why a commentary in this week’s BMJ on ‘moral distress’ hit a nerve when I read it. Moral distress is ‘psychological harm’ arising when people are forced to make, or witness, decisions or actions that contradict their core moral values. I can relate to the sense of powerlessness and feelings of guilt, shame and anger that are associated with moral distress. These are some of the feelings we neurologists are having when we can’t diagnose and treat our patients with MS in a timely and appropriate way. 

If you are reading this and are one of these people waiting in the COVID-19 induced NHS bottle-neck for either diagnostic or therapeutic decisions about MS, or any other non-urgent problem, you need to understand what your NHS HCPs are actually going through. Unfortunately, there is no alternative but to wait it out and hope that not too much time passes before you get diagnosed and appropriately managed. Writing this is particularly hard for me as I am the chair of the ‘MS Brain Health: Time Matters’  steering committee with the primary objective to ‘maximise your brain health’; to achieve this time really does matter. 

If you have 5 minutes I would recommend you read the full BMJ commentary on moral distress; if not, I have pasted a few excerpts that will give the gist of commentary and how HCPs working in the NHS are being affected. 

Coming back to our friend; the most we can do for her in death is to attend her socially distanced and very delayed funeral and help support her grieving husband and children. It is going to take a long time for us to digest, understand and accept the full impact COVID-19 will have on our society. I am going to be optimistic and predict that we will come out of this pandemic better for the experience; more in touch with each other’s and the environments’ needs, more tolerant, more willing to share the spoils of our education and careers, and a better understanding of the limits and promises of modern healthcare. 

Julian Sheather. Covid-19 has amplified moral distress in medicine. BMJ 2021; 372:n2 (Published 08 January 2021)

Excerpts

….. Simply working harder cannot resolve the conflicts caused by responsibility without autonomy

…… Doctors are accustomed to difficulty, to long hours, high stress, heavy responsibility. The job involves helping people navigate life’s gravest challenges: death and dying, suffering, loss and grief. 

…. But as the profession draws deeply on its resources to respond to covid-19, a new concept is entering the mainstream: moral distress. 

…. Moral distress is psychological harm arising when people are forced to make, or witness, decisions or actions that contradict their core moral values. While exposure to the suffering of others can lead to distress, it is not necessarily moral distress. But if serious and sustained resource constraints mean doctors cannot meet patients’ needs, it can open the door to moral distress. If you know that delays to treatment will likely lead to serious harms, consider the effect of repeatedly being forced to place patients on ever-lengthening waiting lists. Moral distress arises in the gap between what professional judgment dictates should be done and what healthcare systems permit. It is also associated with powerlessness—the impossibility of altering the situation so that professional acts can accord with professional values.

…. Understandably, moral distress has been strongly linked to the psychological harms of combat. The term entered health through nursing ethics: lack of professional agency meant that nurses felt unable to challenge behaviour at odds with their core values. 

…. Typical emotional responses to moral distress include feelings of guilt, shame, anger, and, in extreme form, disgust. If moral distress is sustained it can lead to moral injury—a deeper or more enduring harm that can lead to burnout and psychological trauma.#

…. Covid has highlighted how essential the NHS is to our collective wellbeing. It is beyond time to fund it effectively—and to make clear the costs of not doing so. Until then, all health professionals need support in managing moral distress—before its effects become too toxic.

CoI: multiple

Twitter: @gavinGiovannoni                                    Medium: @gavin_24211

How is Prof G doing?

Barts-MS rose-tinted-odometer: ★★★★★

#UseItOrLoseIt 

I am receiving an increasing number of emails and messages via my social media channels asking me for an update on how I am doing. 

I am continuing to improve slowly. I still have pain in my pelvis as a result of the fractures I sustained. However, the pain is manageable and I have stopped all my analgesics except a once-daily dose of an anti-inflammatory that I take before I go for my daily Rehab Walk. The good news is the Prof K and I are walking together on a weekly basis; typically on a Sunday. Last Sunday I almost managed 10km, which is my target for the end of January. 


Worryingly I have reduced movement in my right hip; mainly hip flexion and internal and external rotation. I am hoping this is not due to permanent hip damage as a result of the impact, as I am desperate to run again. Yes, I have ambitions of running another marathon. For my cardio workouts, I started using an exercise bike three or four times a week. However, sitting on a saddle is very uncomfortable with a fractured pelvis, albeit it a healing pelvis. 

My neck is improving, but I find it difficult to stand or sit for more than about 3-4 hours before needing to rest. The latter is due to my paraspinal muscles being weak after my neck surgery. The paraspinal muscles are the postural muscles that support the spine and work as an integrated column. Because the function of the paraspinal muscle column has been affected I have to rely on using my accessory muscles to support my neck and head. These muscles are only meant to be used intermittently so when they have to work continuously for hours they get tired and very sore. Although I am doing dedicated paraspinal muscles exercises as part of my rehab programme, which is helping, these muscles are not up to the task of supporting my head on their own. I have been told it can take up to a year for the paraspinal muscles to recover and work as a unit. This is why I have had to get a new reclining chair with neck support so that when I return to work I will be able to rest my neck muscles in my office. 

The real improvement is that my radicular or nerve pain has gone. This has allowed me to stop all my sedating medication and has allowed me to start thinking clearly again. As a result of the damage I sustained to my C7 and C8 nerve roots in the neck I still have mild to moderate weakness and wasting in my left C7 and C8 innervated muscles. I am told this may improve but is likely to permanent. It is interesting to see how some of my left shoulder muscles, particularly my trapezius muscle, has enlarged to compensate for my weak serratus anterior muscle. My weakest muscle by far is my left triceps muscle, but as I am right-handed I hope this won’t cause too many problems in the future. 

My balance is still not back to normal. I can’t really stand on one leg unsupported and have problems heel-toe walking. I am assuming the balance problem is vestibular from the mild head injury I sustained in the accident. Although I am doing balance exercises, my recovery in this domain seems to have plateaued. For those of you have issues with balance I can now understand how irritating it is and how it impacts on your ability to do simple tasks, such as walk in the dark and dressing. Being unsteady on your feet adds time to many tasks and prevents you from multi-tasking; all these small-time deficits add up and simply slow you down. 

My energy levels and attention span remain low. I still spend a lot of time on my back listening to podcasts and can only work for a few hours at a stretch. In the past, I would typically read a journal on the tube, the Economist Espresso app feed, skim the online Guardian website and read a few Guardian articles of interest, clear my other daily news and journal feeds and walk 2 km as part of my commute to work. I would typically achieve this all by 8 am, the time I usually get into my office to start work.  It now takes me several more hours to achieve the same level of productivity; not to mention the impact on the rest of my day’s work. The loss of my productivity is quite profound, which is why I am going to have to have a graded return to work.

This low level of mental productivity gives me a deep and profound understanding of what it must be like to have MS or have had a major head injury, which clips your cognition and attention span. Thankfully the brain fog I had whilst on gabapentin has lifted. Being a knowledge worker requires you to be able to concentrate for prolonged periods of time. I am very anxious about whether or not I will get back to my normal level of cognitive productivity.  I am also finding it difficult to get into the flow, i.e. a state of intense concentration when you are super-productive. I now tend to flit from one low impact task to the next. I really need to get a grip on this.

Despite the negative tone above, I am still very positive. My accident could have been much worse. I am sticking to my rehab programme religiously, but it is very time-consuming. I literally spend 3 or more hours a day on my physical rehabilitation, which is why going back to full-time work is going to be difficult as it would mean clearing time on either side of my workday to do my exercises. 

A very close colleague and friend of mine who has worked in a neurorehabilitation unit made the observation that physical therapy and rehabilitation often don’t achieve their outcomes because of poor adherence. The latter is clearly driven by the intensity and duration of the exercises. He even implied that I would also give up on my rehab at some stage. However, I am determined to prove him wrong. 

I am not complaining. I am very lucky and privileged to have the resources to pay for the services of a private neurophysiotherapist who has made such a difference to my recovery. I have a newfound appreciation for the added-value therapists bring to the table, both in the acute setting and in the community, in helping patients with physical impairments. It is a great pity the NHS doesn’t invest more in therapy services so that everyone can access what they need.  If I had gone the NHS route for community-based rehabilitation I would be having my first zoom or remote appointment about now.  When I contacted them they told me there was a 12-week wait for rehab services.

The orthopaedic and neurosurgery teams who have been looking after me are satisfied with the progress I have made, which is also positive. 

So, in summary, it is looking good. I am fine and good general health and will be back behind my desk in the near future.  

I want to thank you all for your kindness and support over the last few months; it is much appreciated. It is good to know that there are people out there who care about you.

CoI: multiple
Twitter: @gavinGiovannoni                                    Medium: @gavin_24211

How healthy is your Brain?

As 2021 rapidly speeds up and COVID-19 leaves its trail of destruction it is clear to see how important general and brain health is for resilience against disease and its broader impact. These lessons go beyond COVID-19 and apply to any disease. This is why our #BrainHealth #TimeMatters campaign is so important for people with MS (pwMS) and the general public and why prehabilitation needs to become a way of life. I know this is easier said than done, but start small and gradually expand your horizons. 

It is often said to make good habits stick start doing one thing at a time and try and do it for 2-3 weeks and then the behaviour becomes sticky and you are more likely to persist with it longterm. 

I am so pleased that the messages from our  ‘Brain Health: Time Matters in MS’  policy document are finally getting traction and buy-in from the wider MS community. Shortly before my accident, I spoke to a group of Australian MS social media influencers about the principles of Brain Health and they went away and produced some online materials that will help spread the philosophy and nudge other pwMS and the wider MS community to take MS Brain Health more seriously. 

It was quite clear that when we developed the MS policy document that the message of maximising Brain Health was as relevant to the general population as to pwMS, which is why we went on to write a new and separate policy document ‘Time matters A call to prioritize Brain Health’  and launched the ‘Think Brain Health’ campaign, which targets the general population. Although this focuses on preventing age-related cognitive impairment and neurodegeneration the messages are very similar to one we promote to pwMS. 

I was, therefore,  thrilled to see that Alzheimer’s Research UK have copied our slogan and have launched their own Think Brain Health campaign. May be Oscar Wilde was correct when he said: “Imitation is the sincerest form of flattery”. For me, the important take-home message is that Brain Health is becoming a treatment target and putting preventive neurology centre stage. 

If you are reading this blog post can I suggest you pause and considering reading our ‘Brain Health: Time Matters in MS’ and ‘Time matters A call to prioritize Brain Health’ policy documents, they may change your life. 

CoI: multiple

Twitter: @gavinGiovannoni                                       Medium: @gavin_24211

Reflections on 2020 and a quick look forward to 2021

During my physical rehabilitation exercise session yesterday I realised that I have not reflected on the New Year from an MS or personal perspective be it MS research, MS clinical practice or my personal life. I suspect I have been distracted by my injuries and recovery and that the COVID-19 pandemic has pushed the New Year transition into the future. The political mayhem across the world has also hijacked my attention and as a result, I have wasted many unproductive hours reading, listening to and watching the news. Putting these issues aside there are several MS-related questions that I have asked myself that we need to address in 2021.    

Do my posts still need a rose-tinted-odometer? 

We now live in a world where information is walled-in and that most people only consume information, which is consistent with their worldview – the so-called echo-chamber phenomenon. People with MS who read this blog should be able to handle any type of post; they come here to hear what we have to say, be it sugar-coated or not. I am therefore ditching the odometer. I hope you agree!

Should we continue to challenge the dogma? 

As with any specialist field, multiple sclerosis is wrapped in a cloak of dogma that largely dictates the research agenda. It is always important to challenge the prevailing dogma and to think laterally. The latter is particularly important when it comes to preventing MS. Yes, I do think MS is caused by EBV and there is now a groundswell of people within the MS community who think so as well. So this year will be one in which we focus on EBV and how we can target it to treat and prevent MS.

Another theory that we actively promote is the memory B-cell hypothesis, which overlaps with EBV biology. The B cell hypothesis is not new and underpins many of our current DMTs and a potential new class of treatment, namely the BTK inhibitors (BTKi). The CNS penetrant BTKi also inhibit activated microglia and macrophages and hence may help address the ‘hot microglial’ hypothesis of progressive MS. The latter hypothesis is based on the observation that people with progressive MS have extensive activation of the innate immune system in their brains and spinal cords, which may be responsible for the neurodegeneration that characterizes progressive MS. I have previously argued that this may not necessarily be the case as innate immune responses may be secondary to what is causing MS and may be part of repair response. The good news is that three phase-3 trial programmes of BTKi in MS have already started. This is also an acknowledgement by Big Pharma that we need to go beyond our current DMTs. In other words, there is still a lot to do when it comes to managing MS optimally. 

Smouldering MS is a rebranded old hypothesis that will continue to dominate MS debates this year. Essentially it states that focal inflammation is not MS, but rather the immune system’s response to what is causing MS and that our therapeutic targets should include the processes that are downstream of inflammation that have been identified to drive smouldering disease.

In 2021 we will continue to promote and investigate smouldering disease and help develop the therapeutic paradigm for testing add-on or combination therapies. The hurdles or obstacles to making this a reality are not insurmountable, but we clearly need a consensus from all MS stakeholders that this is what we want to do and to get the regulators on board. 

Will we be able to close the loop on several hypotheses we have been pushing? 

The short answer is yes for some and no for others. Getting funding, setting-up, starting and then completing clinical trials takes time. The good news is that as part of our #ThinkHand campaign the ORATORIO-HAND or O’HAND study (ocrelizumab in  PPMS) started last year and despite some delays in recruitment due to COVID-19 should fully recruit this year. Prof K  tells me that first-patient for the CHARIOT-MS trial should be randomised in the first quarter of this year. 

Some other good news is that our Under&Over remote hand rehabilitation trial will start in the next few weeks. This is will be testing whether a simple, but engaging, dexterity task can maintain or improve hand-function in people with late-stage MS. This study will be testing the ‘use it or lose it’ hypothesis, something I now know from personal experience to be true. 

Other studies that we are involved in that will start this year includes STAR-MS, which compare HSCT to alemtuzumab or ocrelizumab. This study may help address the B-cell versus T&B-cell hypothesis, which I support; i.e. it is not enough to target B-cells only. To manage MS you need to target both B and T cells. 

We will watch on the sidelines to see how the DELIVER-MS and TREAT-MS trials recruit. In DELIVER-MS (NCT03535298) subjects are being randomized either to a maintenance-escalation or an early high-efficacy treatment approach (flipping the pyramid). In comparison, TREAT-MS  (NCT03500328) is evaluating subjects with higher and lower risks of disability accumulation whether an escalation approach or early highly effective therapy (flipping the pyramid) influence disability. TREAT-MS is also comparing disability risk between individuals who switch from a first-line medication to a highly effective medication (escalation) versus those who switch to another first-line therapy (horizontal switching or cycling).  

We designed a NEDA trial back in 2014 to test treat-2-target of NEDA versus standard of care but soon realised that at Barts-MS we didn’t have equipoise and felt it would not be ethical to randomise our patients to a trial of this nature, which is why we personally didn’t progress the trial. We think the data is so compelling in relation to rapid vertical escalation or flipping-the-pyramid, compared to the ‘standard step-care’ approach, that pwMS should be given a choice in how they want their MS to be treated. 

In 2021 I would argue that in most MS centres the ‘step-care’ or ‘slow-escalation’ approach to DMTs is not standard of care anymore. Rapid vertical escalation or flipping-the-pyramid in the context of informed- and/or guided-choice is the new ‘standard-of-care’ when it comes to treating active MS. 

Clearly, as our ideas have evolved since 2014 I would argue that the new frontier is going beyond NEIDA (no evident inflammatory disease activity) and targeting the end-organ. Normalising brain and spinal cord volume loss and protecting the reserve capacity of the CNS for healthy normal ageing should become our new treatment target. This is why we have extended our MS Brain Health campaign to the general population, i.e. #ThinkBrainHealth.

Why did MS remyelination trials fail? 

2020 saw the failure of three remyelintion strategies; high-dose biotin, bexarotene and opicinumab (anti-LINGO-1). Most people have dismissed the high-dose biotin trial as targeting people with MS in whom the MS pathology was too advanced to modify; most of the subjects in the trial had an EDSS or 6.0 (unilateral support to walk 100m) or 6.5 (bilateral support to walk 10m). The bexarotene trial was negative, but a per protocol subgroup analysis showed a positive treand, but was underpowered. Despite this weak efficacy signal the drug had too many adverse events to be taken forward. The opicinumab or anti-LINGO-1 trial was the most dissappointing as it was backed by good science, a positive proof of biology and a phase 2 study that suggested a sweet spot for remyelination, i.e. patients who were disabled by MS, but not too disabled, and had MRI evidence of demyelination. We really need to look at the opicinumab study results in greater detail to find out why the study failed. Was it the biology (wrong target), the molecule (non-CNS penetrant), the population (too old or not disabled enough) or the trial design (wrong outcome measure)? If we don’t learn from these negative studies we won’t progress the field and are likely to make the same mistakes again in the future. 

The question we need to ask ourselves in the MS community is whether or not persistent demyelination is a problem in MS? Just maybe the dogma is wrong and remyelination is not necessary in MS. When you suppress ongoing inflammation in people with active MS the lesions remyelinate spontaneously. Yes, we know that the remyelination processes slow down and eventually fail with increasing age.

Ageing is the next biological frontier in MS and other fields; we may have to reverse the biology of senescence with dietary manipulations or drugs (e.g. metformin) and to then repeat the remyelination experiment. So this year we will hopefully see a phase 2 combination therapy trial of metformin (anti-ageing)  and clemastine a centrally-acting anticholinergic remyelination therapy start.

We will also see phase 2 results of the elezanumab (ABT-555)  trial reported this year.  Elezanumab is a monoclonal antibody that inhibits or blocks the repulsive guidance molecule A (RGMa). Inhibiting RGMa promotes remyelination, axonal sprouting and synapse formation. The basic science underlying RGMa, particularly from spinal cord injury models, is very compelling. Will the elezanumab trial be able to answer the fundamental question about whether or not remyelination and neurorestoration are realistic treatment target in MS? I would give the odds of this trial being positive at slightly over 50%; maybe 55%.

Why are social determinants of health so important?

I have personally been interested in the social determinants of health (SDoH) for several years and I am convinced they affect MS outcomes. To that effect, we have produced some preliminary evidence from our own centre showing that social capital, one of the SDoH, improves MS outcome. We have therefore been fortunate to get funding for a PhD student to study the impact that our public engagement programme has on social capital in our own patients. I see a future when social prescribing will be part of the service we provide to pwMS to improve their longterm disease outcomes. 

It is clear that inequality, one of the major SDoH, explains a lot when it comes to health outcomes and mortality. It is worth noting that COVID-19 pandemic has exposed the brutality of inequality in our societies and this will hopefully be a turning point for politicians to do something about this scourge. When the dust settles post-COVID-19 and the data comes in I am confident that we will see the impact inequality has had on pwMS during the pandemic. 

So yes, 2021 will be the year when our #ThinkSocial campaign will be given some teeth.

Can we listen, watch, experience or do and learn?

I think most readers have heard enough about my accident, resuscitation, acute management, inpatient stay, rehabilitation and now my recovery. The reason for publising my story was to help raise money for our Barts-MS COVID-19 antibody study. To this aim the information campaign was a great success and I would like to thank you once again for generously donating money towards our study. 

However, my brush with mortality and exposure to the NHS as a patient has taught me that healthcare services need to learn from each other. What can we adopt from acute medicine and surgery services and their service design to improve what we have to offer pwMS? This is something I will try and do once I am back at work next month. 

My COVID-19 prehabilitation programme was one of the reasons I got so lucky and I am convinced is one of the reasons why I am recovering so well after the accident. I am confident that by the end of the month my physical rehabilitation will be sufficient enough for me to go back to work in February. 

When I wrote about prehabilitation early during the COVID-19 pandemic it was to try and get the wider MS community to improve their general health so as to maximize their chances of doing well in the event of them getting COVID-19. As a result of my prehabilitation post, I decided to walk-my-talk. This motivated me to get physically fit, yes marathon fit, lose weight and in general optimise my sleep, diet, blood pressure, etc. I even experimented with biohacking, i.e. trying a low carbohydrate ketogenic diet and intermittent fasting. I am now a biohacking convert and think we need to study ketogenesis as a potential DMT in pwMS.

Finally, what has allowed me to do this was time; not travelling, spending quality time at home and thinking. Hopefully, my musings and reflections will allow me to focus on the research questions above and make the many changes I have made to my life during the pandemic a habit. 

Thank you

I also want to thank the Barts-MS team who have been quite amazing in rising the unique clinical and research challenges last year threw at us. We have not come out unscathed, but I think we will be leaner and wiser when we tackle the challenges of 2021.

Happy New Year. 

Twitter: @gavinGiovannoni                                     Medium: @gavin_24211

MSIF updates its international COVID-19 advice

The new MSIF International COVID-19 guidelines have just been published.

CoI: multiple

Re Private Healthcare Workers and Carers

There has been a lot of comments on this blog about private carers and private healthcare workers not been eligible for COVID-19 vaccination under the current NHS England vaccine priority system.

I have just discovered that government guidelines don’t distinguish between public or private employees. So if you are an active healthcare worker, working in the private sector, you are eligible for the vaccine. All you need to do is call your GP and book an appointment for a vaccination. I assume if your GP doesn’t know you very well you may need to provide some form proof of your type of employment.

I would expect the same rules to apply to carers of very vulnerable people with MS. So if you are a carer and look after vulnerable people with MS and are employed privately you also need to contact your GP to make an appointment to be vaccinated. You don’t want to be responsible for potentially infecting the person you care for with coronavirus.

It is important to stress that the whole purpose of the priority vaccination programme is to protect vulnerable people from COVID-19, to protect the NHS and to save lives. It is now obvious to me that this applies to both public and private sector workers.

If your GP refuses to offer you a vaccine I suggest reiterating the above and letting us know how it goes.

Christmas

Barts-MS rose-tinted-odometer: ★

My name is Laura Smith, I am 54 years old and have progressive MS. I am divorced with a grown-up son who is 32 years old and lives with his partner in the North of England. I am medically retired and live alone in a small bungalow in a rural village close to the Essex-Suffolk border. I am disabled and need a stick to walk indoors. I use a wheelchair and/or scooter for outdoor mobility. I rarely go out because of bladder problems. Despite this, I had planned to travel to London to spend the Christmas break with my sister and her family. These plans have now been cancelled. I will therefore be spending Christmas alone. I don’t enjoy Christmas as it reminds me of a time before I had MS, before my divorce, of a time when I had a successful career as a lawyer, a lovely home and a fulfilling family life.  I am dreading waking-up this Friday alone. Help!

Is this short story familiar? 

Yesterday morning on the Andrew Marr show Justin Welby, the Archbishop of Canterbury, made it clear that Christmas was not cancelled, only the celebration of Christmas was being downsized or put on hold. He urged people to reflect on Christmas and what it means if you are a Christian and to delay the need for celebration to a time when it more appropriate and the mood of the nation less sombre. 

The Archbishop then discussed the epidemic of loneliness that COVID-19 has caused and gave some general advice to people spending Christmas alone. The following are things you can do if you are home alone this Christmas. 

If you are religious reconnect with the true meaning of Christmas and try and get to a Church service; either in person or one of the TV, radio or online Christmas services. Pick-up the phone and call people; friends, family or one of the many charitable organizations who provide telephone companions. Watch Christmas TV. Listen to Christmas carols. If you can practice mindfulness please do. Get out if you can for exercise and fresh air. Make sure you fill your day with as many activities as you can. 

If you can I would recommend reading or listen to a reading of the Charlie Mackesy book ‘The Boy, The Mole, The Fox and The Horse’. My wife bought all of us a copy of the book at the beginning of the pandemic and whenever I feel low I pick it up from the pile of books next to my bed and read it (it only takes 5 minutes to read). I know it can easily be dismissed and labelled bedside philosophy, but there is something very therapeutic and uplifting about its tempo and messages. 

https://youtu.be/81b4i9jQhck

My favourite quote in the book is “What’s the best thing you have learnt about storms?” “That they end”, said the horse. Yes, this storm will end. 

If you know someone who is alone this Christmas can you please take some time-out on Christmas day to give them a call and if you have any other suggestions to help the many people who are alone this Christmas please let us know. 

I hope you are all holding up and I want to use this opportunity for us at Barts-MS to wish you a different, but merry, Christmas or happy holidays. 

Crowdfunding: Are you a supporter of Prof G’s ‘Bed-to-5km Challenge’ in support of MS research?

CoI: multiple

Twitter: @gavinGiovannoni                                  Medium: @gavin_24211

PTSD-2

My recent post on PTSD (post-traumatic stress disorder) and the resulting comments were an eye-opener to me and many of our readers. If you haven’t read the post and the comments I would urge you to do so as it provides context for the following survey we are doing in partnership with Shift.ms a social platform for people with MS.

We understand that this survey may be upsetting or distressing to some members of the community so you are welcome to skip any questions that you do not want to answer.

The purpose of the survey is to see how common PTSD is in pwMS and then in collaboration with Shift.ms to develop an awareness and training programme for MS Healthcare Professionals to (1) prevent pwMS developing PTSD when they are diagnosed as having MS, (2) to screen for the condition in routine MS practice and (3) to develop the skills to treat PTSD so as to mitigate its impact of PTSD on the lives of pwMS.

Please click here to take the Shift.ms survey; thank you.


As you can see this blog has become more than a soapbox and occasionally we try to address important issues to improve the lives of people, and their families, living with MS.

CoI: multiple

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