#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

51 thoughts on “#MSCOVID19: musings from the frontline”

  1. I’m due my 2nd full ocrelizumab in May which has been postponed with no planned date. I’m meant to be getting the shielding letter as my neurologist is sending to all her patients on any DMTs. Like you I worry about the delay in my treatment but what can I do?

  2. “What we really need is some certainty or an effective antiviral agent or a vaccine that works. ”

    Are you refering to MS or CoVid…..hmm..

  3. I’m a 30 year old on Ocrevus. Apart from my v active MS (new lesions, no disability) I’m pretty healthy otherwise. I don’t consider myself at high risk of Covid-19.
    I feel my treatment is being compromised (now postponed for 3 months) and I’m terrified my MS could take a bad turn because of this. If I could chose, I’d take my next infusion today.

  4. My neuro tried to shield every single patient on any DMT. I am on ocrelizumab, luckily my last infusion in early March missed the pandemic by mere days and so went ahead. I am in no doubt that it would have been cancelled if even a few days later.
    I am young, fit, healthy, BMI 23 no comorbidities. Last lymph count >1.5.
    I also work as a HCP. I am ‘working from home’ for now but feeling pretty useless. What I want is some kind of distinction between those who truly need to shield, and those who can ‘come out’ with the first line of lockdown restriction despite the high risk label.
    Otherwise I feel like I am literally trapped!

  5. I was supposed to be starting Ocrevus about now (been on copaxone just over a year but 2 MRIs show there is still activity) Had the bloods taken to see if everything else was ok in Feb/March then they rang the next day and I was told it’s postponed indefinitely.

    Appointment for next week with neuro changed to a telephone one.

    Would I be able to INSISIT I want the Ocrevus to be started or have I got no chance? ( I wanted to look at the MRI pics they took about 6 weeks to report on that was done in December–take it that can’t happen either
    I am getting electric shocks in my left inner wrist which I’ve never had before, does that mean there is more new activity or that that is just part and parcel of MS?

  6. Yes. I’m not formally diagnosed yet, but my lumbar puncture to confirm diagnosis has been cancelled. The MRIs showing lesions on my brain were done last summer, and my symptoms started noticeably probably a year before that. I was already distressed about the delays I’d had for various reasons and the possible worsening in the meantime. Now I imagine it’ll be another 6 months at least before I can even have the lumbar puncture and I’m terrified of getting worse in the interim. I have residual damage (blurry vision when hot, paresthesias) already and want to avoid more as much as I can! 🙁

  7. My visit to spasticity Clinic was cancelled because lockdown was coming. Due injection on shoulders, in pain getting both locked. It might be too late when all of this covid 19 Finishes.

  8. I was meant to have my first full infusion of Ocrevus on March 20, and quite literally only a few days before this I was called by my MS nurse to inform me that it had been cancelled and delayed for 3 months. I’ve heard nothing since.
    Devastated doesn’t quite cover how I’ve feel about that decision, as it was out of my hands; I wasn’t given a say at all.
    Had I have been given the choice (and I said this to my nurse) I would have still had the infusion as I am more worried about the impact my MS and what that might mean for my future. I am currently shielding and would have done so from the start if I were given that infusion, only I would be less stressed and less fearful of my own body. Yes I feel that taking this away compromises my MS, and giving me twice as much to worry and be scared about.

    1. You are the kind of person I am worried about. Let’s hope people with MS waiting for treatment don’t have a catastrophic/disabling attacks; not to mention the slow shred that is happening beneath the surface.

      1. Is there any chance that they will revisit this and give us the infusion earlier than 3 months from now?

      2. “not to mention the slow shred that is happening beneath the surface.”

        Is this smouldering MS?

        I’m also concerned that MS research is on hold for the foreseeable future. Trials are being halted or deferred and conferences cancelled. They’ll be little chance of any breakthroughs announced this year. And then they’ll be the inevitable reduction in research grants and fundraising.

      3. yes MS research has been put on hold and sadly the MS grants rounds have been delayed so rather than keep the submission dates and whilst people are at home there would be plenty of time to review grants, so we will come out of the trenches and starve…had the grant rounds been kept on schedule we could have come out of hiberation to make a fresh start, but now grants will finsh and they won’t have delivered and so I suspect research and MS research will shrink.

  9. Re
    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.
    Valid point. On the other hand air quality hugely improved 🙂 fewer deaths from asthma. Far fewer deaths on the roads:
    More people walking and cycling,
    more time for cooking at home. Will this be the year we finally take responsibility for our own health and turn the tide on type 2 diabetes?

    1. There are thousands of missing patients who in normal time would have turned up with their imminently treatable conditions. Ophthalmologists are seeing patients going blind from treatable retinal detachments because they don’t seek medical attention quickly enough. Paediatricians are anxious about children with serious treatable conditions; where are all the sick children? I am anxious for people with active MS.

  10. On the button as usual.

    Poverty is proving to be an expensive business. We have intentionally created it, designed our food and agricultural sectors to produce junk food (plus lousy jobs and terrible housing) which makes endemic poverty ‘manageable’. Good food costs more, poor people cant afford it – answer – let them eat junk! Now we are seeing the health consequences magnified by COVID as they have been by so many other illnesses, including MS. The reported preponderance of the overweight/obese on ITU’ is sadly predictable.

    Black people in the US and here are doing relatively badly too. While I’m sure historical and persisting inequalities are behind this, might a manageable factor be low vitamin D levels? Is mass supplementation the least we could recommend?

  11. I am in the vulnerable category due to a lymphocyte level of 0.5 (previous treatment with alemtuzumab) and my level of disability (EDSS 6.5). However, until recently, although I have been stuck working from home, I had a physio visit once a week and I had a private pilates lesson once a week. These have had to stop. I can see me escaping COVID-19 in the short term but being wheelchair bound due to lack of movement. This concerns me more than COVID-19.
    I am also not convinced that moving to quarterly blood monitoring is the best idea.

  12. I was taken off Tecfidera in September due to a low lymphocyte count,. I was waiting to see if I could try Mavenclad but both MRI & blood-test at St George’s postponed. Currently taking nothing & feel very vulnerable.

  13. I have SPMS and not currently on DMT. I had my annual review with the neurologist by phone 2 weeks ago, not ideal but better than nothing. In addition to this I am one year through the MS-STAT2 trial which has now stopped abruptly due to COVID 19. I understand that this will be picked up again when the crisis is over. Presumably this is the case for most research trials? This must be frustrating for researchers as the data will be more difficult to analyse when finally complete, and not an effective use of research money.

    1. There are guidelines published about running studies during the COVID-19 pandemic. Jump on the FDA or EMA website and have a read (simply google COVID-19 and clinical trials and guidelines). Both specify that stopping trials should be carefully considered based on risk / benefit. Many trials continue to run globally with modifications.

  14. This is crazy, and quite sad. Reading peoples experiences in the comments makes me so grateful to be a patient at Barts. The worst that has happened to me is that my infusion for Tysabri has been changed from 4 weekly to 6 weekly which I now understand is good thing. I was unable to go to my last infusion because I had a sore throat (cleared up in a day) and had to wait 14 days. The infusion nurse called me as soon as the 14 days finished and arranged a slot for me the next day. I was able to see my MS nurse and get an update from her for something unrelated as well. I am so glad that I have not been put on the back burner because of this virus and that the Barts team are doing their best to make things buisness as usual for me. Of course, this could be different for patients on Ocrelizumab at Barts.

    All in all it feels like we are living in a post-apocalyptic world right now where survival of the fittest and eugenics has become the main theme; if you’re sick then tough luck to you. It’s quite sad.

  15. Had my first 2 Ocrevus just before this all kicked off (Feb), and am relieved. Would be feeling a lot more vulnerable if that was postponed and feel bad for everyone who has had this happen. Including my sister who’s treatment is taking ages to get sorted. This blog has made me a lot less concerned about any increased risk – or lack thereof on most of the MS treatments. I am at Royal London, nothing so far about delays on next one. I think the government should continue to shield the extremely vulnerable (and define it better, so many people in the MS community are getting letters, where they probably don’t need them? Think there was a panorama on this the other day too), while slowly lifting restrictions and let more people get infected at a slower pace as you said. I don’t think waiting for a vaccine or treatment is an exit strategy either as it may take so long, and may not even be fully effective? Especially if the disease will be around for a long time.
    It seems like an impossible decision to make.. and lots of people will die in either scenario. Is the modelling of deaths caused by covid over x period of time vs deaths caused by other knock on economic effects of lockdown/health resources delaying other treatments and operations etc – public? That should be shared and explained to us all.

  16. Did you say you had new info that would reduce the risk level of ocrelizumab in your opinion?

  17. I have recently been diagnosed with highly active rrms. My appointment to discuss the appropriate dmt has been cancelled with no further appointment in place, stating ‘there issues regarding choice of immunotherapy due to Covid crisis’.
    Am on the list for a clinic appointment when services open again. Am worried.

  18. I’m not on a DMT or on the government shielding list and I haven’t left my home for 30 days. Seeing the posts here are quite worrying. At diagnosis I had very active MS, but there were no DMTs. When I say active I mean hospitalised. Worrying what might happen if people don’t get their treatment is only going to cause more harm. So far I have had two people die, one seriously ill in hospital and numerous suffering at home. One of the deaths had advanced MS. Covid kills. Last week I watched the blue light ambulances rush by. Today there was a hearse, one car no flowers. I see the public breaking lock down rules. It doesn’t help to be scared of what might happen. Before you respond, I had lung cancer for months before I got to see a respiratory doctor, that was pretty scary. I’m having a flare up of my MS, but I will leave it for now.

  19. A few days ago I woke up with badly swollen feet. It causes severe pain to walk because they are so swollen. I can barely get socks on my feet, that is how swollen up they are.

    If times were semi-normal, I would have sought care by now to find out what is going on. Is this another MS thing or is it something far more serious? I do not know.

    Yesterday, I called up the “Dial-a-Nurse”, a benefit that comes with the $800 a month insurance that I have.

    We discussed my problem and I was told to elevate my feet and try some ice on them. I’ve tried this and it doesn’t really help much at all not does the acetaminophen (which does nothing for peripheral neuropathy!).

    Today, I am supposed to have a large order of food delivered as I have not been able to go out to shop for almost 6 weeks now and supplies are running dangerously short. What food banks there are where I live are empty with no food to give out. Will the food arrive today with is costing me a fortune, as the prices are jacked up and they manage to get you 3X for “delivery” fees.

    What happened to help the weakest among us? What happened to helping the disabled? Well, I figured that out not long after my diagnosis. There is no “help’ for me unless I sell myself to the U.S. government as I’d indebted for life if I were to even qualify to Medicaid/Medical. Having $2,000 in the bank is simply too much to have, so you qualify for no help. If you need help you pay for it with the going rate being a minimum of $150 for a home visit.

    So, between the fact that I cannot get medical care out of FEAR (they don’t want to see you at the health clinic, believe me) of contracting the highly contagious COVID-19 and that I have little food left to eat, I would say that yes, COVID-19 is most certainly affecting the level poor care that I normally receive. I am no longer allowed to see a doctor, so it is a nurse for me. If I want to see a doctor, I have to say the word DOCTOR and I WILL get to see one but, if I do this, the nurse will take the blame for not providing the level of care I deserve.

    I’ll admit it, I am at my wits end and what can I do about my poor swollen up feet but cry?

  20. Luckily I had my ocrevus right before this all went down, but so many people I know in the community in the U.S. are being forced to postpone. One other factor I wanted to mention about the unintended consequences of the all this for everyone with the social distance combined with economic distress is the tremendous psychological tool this is having on people that will no doubt be related to health issues and potentially death. I am glad I am not a politician as there are so many factors, just a disaster all they way around.

  21. I have already head my monthly bloods post alemtuzumab canceled for 2 months ( have them done at my gp) and my yearly appointment with neurologist looks in doubt. Its interesting there’s an additional 6090 death rate for this time of year not including covud 19 related. Yet to be explained.

  22. Interesting as always. I’m going to miss out on very useful Orthoptics treatment but I don’t think it’s going to accelerate my MS.

    I wonder if it is possible to calculate whether or how much the NHS has deployed its limited resources to the crisis before the crisis is over?

  23. Well, thinking about it one thing they could have done is be better prepared spasticity clinic it is not inside the hospital but they should’ve carried on Treating the patient with protective equipment proper one and then with the customers being in masks . It is not fair to abandon us

  24. I received a call from the unit at the Royal Free today, cancelling my Ocrevus (first full dose) infusion, which was due next week. Rescheduled to August. A 4 month delay.
    I am concerned how my MS will ‘behave’.
    I have been unable to get through to anyone in Neurology to discuss.
    I have emailed.the team.

    1. Sadly, the Royal Free Trust has had the most deaths from Covid 19 to date overtaking Northwick Park hospital. Spare a thought for the many families whose loved ones died alone, leaving the caring nurses to provide comfort. This is exceptional times.

  25. Reading back through this post again:
    Time is brain whether or not there is a COVID-19 pandemic.
    Sums it up exactly. MS will be with us long after pandemic subsides and life has returned to some sort of normality.
    Sad to read comments from people newly diagnosed and waiting to start treatment.
    And just as Ocrelizumab and Siponimod were about to come online after years of PPMS and SPMS being sidelined.

  26. I was hospitalised with a relapse at Christmas. Still waiting for the MRI, it was supposed to be mid March but was cancelled due to covid. Feel like care has been compromised and I feel vulnerable as a consequence. I actually feel quite relaxed about covid – I think ms gives you good coping strategies for dealing with fears around health, future and social isolation – most people aren’t used to this intrusion ….

  27. No I’m getting all upset with all these comments and realised how many people are struggling and i am thinking of all those who cannot go to hospital e.g. people needing transplants, people becoming blind, people with big relapses in ms….. everything is stopped everybody waiting.

    Yes we could have done something different , more planning, seeing the big bear coming.
    I don’t blame it on the NHS staff doctors nurses and everybody who is trying to do good, it is not their fault. someone has to be the responsible.

    In my case, the spasticity clinic is not in the hospital, If we would have been more prepared stuff could have been there with highly protective equipment still treating vulnerable patients.

    I heard Germany was better prepared, they got the tests, the protective equipment… All in time… Surely better government decisions.

    Ultimately the government should’ve been prepared, better advised, more tests more tracing.
    One day when all this is over they will have to be responsible for all the chaos that is happening in the background.

  28. I suspect these few commentators are just the tip of the iceberg. People with non-COVID-19 chronic health problems will pay a huge price both medically and personally from the reconfiguration of the health services. I assume similar things happen during war.

    What is not covered here is the effect acute poverty is having on some peoples mental health. I have heard some horror stories. Some people simply don’t have enough food not to mention the mental toll from being socially isolated.

    1. Really tough and effects will be long-lasting.
      Hopefully local community support groups are stepping up. Where I live local council, churches, volunteers etc are really organised with food deliveries, shopping, additional pop-up COVID-19 foodbank, running errands, support phone calls, door to door newsletter drop to explain everything.
      I’d love to say am volunteering but am going out as little as possible

  29. I was due to have year 2 of Cladribine in May and I got a phone call yesterday to say it is being pushed 3-6 months. I am concerned about my MS and hoping it will keep at bay as most of the team at my hospital have been redeployed and I honestly think a bad relapse would leave me on my own to deal with the fallout and just hope for the best!
    I chose Cladribine to try and go hard and fast with as much risk as I could bear – not for this to then be halted half way through. I really don’t want to have to start from the beginning again!
    I was only talking to a friend recently about how I feel and fear for every single person in the country with a chronic health condition – I guess we are collateral damage ☹️

    1. A shame every one…almost every one is on enforced holiday and you dont need to go to hospital to get clad:-(

  30. I was lucky enough to finish my 2nd round of Lemtrada last summer (before the EMA review!). Lymphocyte count 0.5. Low EDSS. I’m in the shielding category but ‘feel‘ pretty strong, stable MRI.

    I so feel for people newly diagnosed or early on in their treatment because options have disappeared. As if we don’t live with enough fear.

    Choice as to where we place our on risks on the scale of risks is already difficult…now gone

  31. I’m an MS pt. Really quite well. I work as Paramedic in London and got the covid19 about 3 weeks ago. Absolutely certain, tested positive. I had fever for 7 days over 38°C. I feel properly tired, but otherwise ok. Some pseudo MS stuff but ok.
    I was maybe 6 months post final dose of cladribine when I got it, and I must have been swimming in Covid19 at work.
    Do you think I am immune following this? I hope it is useful to hear about someone with MS getting away with it? I am normally well though.

  32. I have heard nothing from my MS team. I had my 2nd round of Lemtrada a year ago. My lymphocytes are still only 0.4. Got a call from my GP surgery yesterday, wondering “if I should shield”. They are completely useless with anything MS related and believed I’d had the treatment in the last 12 weeks (jeez, just look at the records!). I’m self isolating and continuing to manage my own condition, though I am still getting monthly bloods taken at home. I feel fortunate I didn’t need round 3 but fear for the management of chronic conditions in the current climate.

  33. They appear to be looking at people’s DNA to see if they can see why some people get a much milder or even asymptomatic version of corona.
    Are tests also being done / stats on whether previously having eg EBV or JCV might also suggest people might have protection/different disease course.
    I assumed that stats guys would be all over this along with other biological pointers ?
    Is that the case?

  34. When the lockdown lifts, it’s clear we’ll be in a transformed world. My question is how this will affect the growing devolution of secondary care to GP practices? (cf Private Island by James Meek). Might tele-medicine save us from the drive to abandon specialist medicine to GPs operating as commercial businesses?

  35. I was due to begin my first ocrelizumab a month or so ago. It was cancelled. I wouldn’t ordinarily worry but my last MRI was, worryingly enough, much worse than ever. I was diagnosed in 1995 and have been far more affected cognitively rather than physically. So this last MRI was terrifying especially as my neurologist was astonished that I’d walked into her consultation room unaided! This last scan result was expected as I’d stopped taking gilenya a year earlier (awful depression). A course of methylpredisalone fixed this I think. What now scares me now is what happens if I slip straight back into relapse resulting from no DMD’s. I’m 47 now. I was diagnosed at 22.

  36. I was diagnosed in 2003 with rrms, but suspect I may be moving into spms; more symptoms, more aids to walk, no relapses, etc.

    I am on Fingolimod, and registered myself to shield, (lymphocyte count 0.5 regularly) my GP sent me a shielding letter after this.

    I have not been in touch with my MS Nurses/Neurologist, as there seems no point; either they’re not there or take much longer to get back to you.

    I’ve asked about an mri, (at least 12 years since I had one) but was told to wait, I assume because if spms is confirmed, then I will be taken off my current DMT, as there will be no funding for spms, and I decline further once stopped…

    I fear you may be right. I am in a holding pattern…

  37. Hello ,
    I’m new to this blog and glad I found this place with people to share my thoughts and MS experience with.
    I’ve been on Tecfidera for almost 2 years now and after seeing some new activity on my MRI my Dr decided to offer me a choice between Tysabri and Ocrevus.
    I was found JCV highly positive so Ocrevus is what we’ll go with.
    After a series of blood tests, some hiccups in the results I am still waiting for them to tell me when I start the wash out for Tecfedira.
    I’m left feeling quite unsure, why am I still taking a drug We know isn’t working and how much more damage may have already happened during these 4 months of decision making. Not to forget I will have to stop the current medication for 4-6 weeks from when they give a go ahead.
    Then there’s the worry of what risks does a stronger DMT pose during COVID outbreaks and if I should be shielding. Which is what brought me to this page.
    We are currently under a firebreak lockdown.
    I wish everyone well during these worrying times.
    Thank you.

  38. After being told to stay away from work ( Police Officer) i am now being told i am not high risk and that i can go to work as normal. One clear, standard message needs to be stuck to. I’m on Copaxone and am fit and healthy apart from numbness in one hand but have lost so much fitness thanks to being told to stay at home for so long

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