#MSCOVID19 – a pyrrhic victory

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Some of you may have read and being appalled by the following piece in this morning’s Guardian.

Robert Booth. Coronavirus: real care home death toll double official figure, study says. 13th May 2020

Excerpt: “More than 22,000 care home residents in England and Wales may have died as a direct or indirect result of Covid-19, academics have calculated – more than double the number stated as passing away from the disease in official figures.”

The hidden burden of COVID-19 goes way and beyond care homes. I was on a Zoom video conference with my UK colleagues last week and each person was asked about their centre’s COVID-19 experience. Almost everyone had had a COVID-19 related MS death. The tragedy was the deaths tended to be in older people with MS who were more disabled and with comorbidities. I am aware of two MS deaths in our patch, both bed-bound with end-stage MS. Whether or not these patients died from COVID-19 related problems is unknown. Both deaths have been ascribed to complications of MS. 

Forget about the deaths what about MS disease activity? Before COVID-19 it was very unusual to have patients on established DMTs have severe relapses. Severe attacks were typically seen in patients presenting with their first attack or in patients who were non-adherent to their DMTs. 

Since the lockdown, I have had three patients who have had severe relapses waiting to be initiated on treatment. One who has been furloughed and decided to be locked-down in her parents home far away from London. One waiting to start a DMT, but had delays in relation to baseline screening bloods and making a decision about treatment. As she has now had a severe and disabling brainstem or cerebellar relapse this shifts her into the high-disease activity group so she is now eligible for natalizumab. The latter could be viewed as some kind of “COVID-19 pyrrhic victory” as she now gets to be put on a high efficacy therapy. Fortunately, she is young so she should make a reasonable recovery from the relapse, but the damage has been done and some of her precious brain reserves has been shredded and lost forever. 

The final patient is a bit of a procrastinator and he decided to delay starting his treatment until after the peak of the COVID-19 epidemic. If there was no COVID-19 he would have almost certainly be treated two months ago, which would have potentially prevented the relapse. 

I would be interested to hear if any of you have had similar experiences, i.e. poor outcomes due to a delay in your treatment or untoward events due to your MS service being mothballed during the COVID-19 crisis.

I have little doubt that people with MS will be paying the price for COVID-19 for years to come. I suspect many will have been started on lower efficacy DMTs, some will have had their DMTs stopped or switched to lower efficacy or supposedly safer DMTs, others would have had their treatment initiation delayed and other would have had repeat dosing postponed to some yet to be determined date in the future. In addition, many people with very active MS who were lined-up to undergo HSCT have had their procedure delayed indefinitely. 

I wonder what the true cost of the above will be for people with MS?

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

30 comments

  • I am curious as to whether having Covid 19 affects one’s chances of having a relapse. Sometimes it is difficult to tell which symptoms belong to which condition/illness. Increased dizziness and tiredness = Covid 19 or worsening MS symptoms? Questions I am trying to answer for myself at the moment. (Your posts are very useful and interesting, by the way.)

  • Those waiting for infusion therapies such as orelizumabd, natilizumab and alemtusmab. Can they not be put on intermediates until this crisis is over? Tecfierra or Spinimod? Or is it because of the extra cost its not being done? My clinic at charring Cross is delivering medicines directly to patients so they don’t have to leave home.

    • Yes, we can use lower efficacy treatments as a bridge, but this is against the principle of treating MS early and as effectively and as soon as possible.

  • The death rate from this virus isn’t even close to the death rate of the flu, also did you know that the chief medical officer whittyy was given 40 million quid by the gates foundation, massive conflict of interest. And as for Neil Ferguson’s previous record claiming 65 thousand people would die from h1n1, for him to the claim covid would kill 500,000 brits, makes all the hysteria look as if there is sophistry afoot.

    • Yes, but I am talking about the collateral damage to people with MS from the COVID-19 response. We have had the MS service we offer massively reduced, no face-2-face consultations unless urgent, no non-urgent MRIs, no LPs for NFL levels, no alemtuzumab infusions or HSCT, no relapse assessments, reduced MS clinical nurse specialists, halting of MS trial recruitment, delay in activating MS trials, no physiotherapy, no occupational therapy, reduced pharmacovigilance, delayed diagnosis, etc. etc. Is this fair? Is this right?

      • None of which is any good to you if you’re dead. The infusion wards were made over to Covid 19 severely ill patients. One look at the BBC2 hospital programme will tell you why this happened. London was overwhelmed. Scenario, an NHS worker can’t be put on a ventilator because the bed space is being used by an MS patient having an infusion, I wouldn’t want that on my conscience.

        • Please read my blog post from today: https://multiple-sclerosis-research.org/2020/05/mscovid19-de-deployed/

          We have empty wards and far too many doctors on acute rotas waiting for COVID-19 patients that are simply not arriving. We need these doctors to get back to looking after other patients; cancer patients who need chemotherapy, MS patients needing alemtuzumab or HSCT, patients who need hip and knee replacements, etc. COVID-19 will be here for another 2 or 3 years. We can’t put on hold the treatment of MS until after the pandemic.

  • I’ve asked this before here but when will the ABN review it’s guidelines on DMTs? My 2nd full dose of ocrelizumab was due next week but postponed indefinitely. If Prof G is on the ABN’s panel, is he asking these questions there as they are the experts who can influence neurologists to recommence rising?

    • They are reviewing them now. I am not on the panel anymore; members rotate on and off the panel every 3 years.

      • Thanks Prof G,
        I’d meant re-dosing above ☺️
        What do you think they will decide about ocrelizumab? I was hoping that you were still on the panel as understand your position on delaying treatment.

  • Don’t forget deconditioning from isolation (confinement) with reduced access to physical therapy.

    OK we older types (70 next month here in 🇨🇦) are no longer considered for DMTs and by some accounts won’t benefit much from any kind of therapy. Not true in my case. I address spasticity with a combination of Botox and strength exercise. I know when improvement occurs and is sustained. I can increase weight loads and repetitions, and this translates into functional ADL improvement. At this stage, every year that an EDSS gain of 0.5 is delayed is a significant victory. It contributes to independence and decreases the lifespan utilization of health system resources.

    Decreased activity and lack of access to physical therapy treatment therefore add to the burden of COVID19 disease and MS. Physiotherapists are doing virtual sessions, but it isn’t the same. Some exercises/activities can’t be done safely without a therapist present. Clinics have purpose-built equipment, while remote therapy uses whatever can be found in the home.

    The return to “normal” presents
    complex issues for older PwMS. While MS by itself doesn’t heighten the risk of infection with COVID19, age above 60 is strongly associated with development of pneumonia, transfer to intensive care, intubation and ventilator breathing assistance. It is reasonable to assume that the weakened chest muscles and diaphragm of a PwMS will make it harder to expel fluid and tissue from COVID19-infected lungs. So the COVID19 prognosis will be relatively poor, and functional lung deficits on recovery perhaps greater than average.

    Now consider that any infection tends to exacerbate MS symptoms such as fatigue, spasticity, balance and loss of limb function. The conclusion must be that COVID19 infection will probably leave an older PwMS substantially worse off physically than they were before contracting the disease. As a result, those who have not been infected thus far will have to consider carefully whether to venture outside the home and into public common space, lifts, public transit, auditoria, lecture halls, theatres and shopping concourses. If they do, masks, gloves and strict attention to personal-distance guidelines are essential. They should avoid approaching or interacting with anyone not wearing a mask.

    The balance is unfavourable. Reintegration will be dangerous. Yet continued isolation has its own drawbacks. We all have things to do, and since it takes us longer than others to do them and we’re more easily amused, we’re at less risk of being bored silly. But out of sight, out of mind. The threat to our social participation – friendships, professional relationships, reunions, keeping up, staying in touch – is real. Now, you know where this is going: add to the direct burden of COVID19 disease the serious mental-health consequences attendant on indefinite isolation of the medically vulnerable. Moreover, the epidemiologists tell us that PwMS can expect to live a sex-adjusted median 6 or 7 years less than others. That leaves a moderately lucky 70-year-old with 10 years. To me each one is precious, and my anguish intensifies as I think about the successive risk calculations that lie ahead. To a health economist each of those years is worth less than the previous one. Even by that bloodless reckoning many valuable years are in play. We should be thinking about where older PwMS and the similarly vulnerable fit in “reopening” plans.

    To anyone who’s read this far, thanks for your patience. To Prof G – I’d love to be told I’m wrong. Until then, I’m not sure you’ve reconciled your concern for COVID19’s impact on all PwMS with your population immunity forecast. It seems that if we wish to continue the joy and satisfaction of living among our sister and brother humans, and of sharing life with them, we must assume a brutal price in morbidity and mortality. Maybe it has to be that way. Still, the perennial preoccupation in disability rights comes to mind. Once again our needs are afterthoughts. It’s assumed that the price of returning to “normal” will be a quantity of early death and increased disability. But what would it be like if our needs came first, or even if they were ranked at par with the needs of others?

    • Paul, you took the words out of my mouth. After HSCT 3 years ago, i stopped interferon and, for the last 2 years, I’ve been to physiotherapy for 2.5 hours 3 times a week (I have very good health insurance here in NY).
      After the Covid-19 pandemic hit and NY began lockdown, I’ve done 3 tele-PT sessions. I now have PT exercises to do on my chair or mat… but this doesn’t come close to hands on PT and supervised exercises with PT equipment. And it’s hard to fit this in with my (part time, desk) job, now near constant cooking, periodic supervising of children’s remote learning etc.
      Without physiotherapy, I can feel my legs increasingly tightening up, my feet increasingly dragging, my strength increasingly fading away … and my defiance against the ravages of MS increasingly hollow and futile. It feels like my life is trickling away through my fingers. But of course I’m not dying of Covid-19.

      • Tanweena – I’m so sorry. Your description is all too familiar. Even where the term “welfare state” is anathema, our lives are built on a foundation of institutions and associations. Lockdown tears out much of this support, strips away layers of richness and forces individuals to carry extra loads. Please consider all possible sources of help and respite. Living with MS is a process of adaptation; if we make it a battle MS fights back with a superior arsenal.

        Lockdown also exposes the social determinants of quality of life in chronic disease. Since this is a research blog, it might be worth noting that COVID19 offers a unique opportunity to broaden research on symptom therapies and social supports by investigating what happens when they are abruptly withdrawn. Hundreds of thousands of PwMS who missed the early-treatment turn have decades of life to live with neurological and neuromuscular challenges. They deserve better evidence-based physical and psychosocial therapies — the best that research can provide.

  • my treatment to start Ocrevus was supposed to start just as this was kicking off so in a subsequent neuro telephone appointment they say July..ish…. and then only if they think it’s safe to do it.

    So what parameters for “safe” do you think they will be using?

    My luck must be running out now seeing as less than 2 years with this and almost 48,female, still no pemanent disability with the worse relapse being severe vertigo which I live in dread of returning.

  • Back in March, I tried to get hold of Tysabri nurses and my neurologist as I wasn’t sure if I should go in to get my treatment. I was told by my nurse that she was busy and “couldn’t answer every little question” and my neurologist was unsure.
    I then decided that I wouldn’t go for treatment until I had some certainty from someone. I didn’t get any certainties so three months on I still haven’t had any treatment and all of my old MS symptoms are back and have had my shielding letter.
    I’m now terrified to leave the house and haven’t since 16th March. I would be too terrified now to go and get my treatment and I am struggling with anxiety and day to day symptoms.

  • Funny old day yesterday. My partner gets the call to tell her she can start her delayed (from April) ocrelizumab treatment in June (she came off fingolimod in January as it wasn’t proving effective any more to treat her highly active RRMS).

    And then she also spent a portion of yesterday in bed with a headache, which has now led onto some numbness in her hand and most likely a relapse.

    Keeping perspective though as we were imagining a 6 month delay at least.

      • Thanks for asking. It’s been a roigh day, she got worse, speech affected and mobility, but speech is improving a good bit now. Her doctor won’t put her on steroids as she’s had 2 courses already this year. But her ocrelizumab has been brought forward a week, which is something.

  • I feel for those whose treatment has been delayed by the COVID crisis. It is also concerning that right now there is no or very limited means of contact for people with MS. No monitoring, no MRIs, no check ups. Surely this a danger in itself. Is this lack of care still necessary?

    • Aren’t hospitals hot beds of infection at the best of times?

      Not to mention they have dragged everyone from every department to the front line on covid…I had a bowel/bladder appointment cancelled and the woman on the phone said the nurse was being shifted to the front line..

      I had an appointment for assessment for a bath chair cancelled and told they would get back in touch when things quieten down. Closing my eyes in shower makes me dizzy and always feel like I am going to fall out of it lol.

      Different departments were very quick on locking down, I wonder how long it will be until they get back up to speed?

      So not just the “big” MS stuff we are seen for is being affected.

      Having said that, not in a particular rush to get anywhere near a hospital as on the 12 week shielding

  • I’m concerned about the extension of time between infusions. St George’s did a blanket 8 weeks between infusions, I’ve fought it down to six weeks, but 12 years in and never missed an infusion of Tysabri I’m v worried.

  • I’m worried about the chances or relapsing, I’ve been in Tysabri for nearly 12 years no major relapses. St. George’s have done a blanket 8 weeks between infusion I’ve managed to argue it down to six weeks – at least for the first one. Bit greatly concerned how this will effect me

  • I feel “lucky” I was diagnosed 3 years ago. Would not like to go through that now, it was stressful enough then. Multiple this over the full NHS and it’s scary. For example I’ve had a non ms related investigation cancelled, just hope that it turns out to be nothing serious when I finally have it. My mum had a full knee replacement last year, she was told after the operation she was “lucky” that her knee hadn’t completely fractured. The operation came up “quicker” than the original 14 month wait, if it had been as advised it would now be cancelled- where would she be? Bear in mind doesn’t matter if you could afford to pay privately as they have also cancelled operations. (The only equaler in the current situation) . But there must be people in that position now. As it is she can’t get a steroid injection for tendonitis and she says she feels like knawing her shoulder off. As you say, it will be interesting, if that’s the right word, to see the excess date rates. I assume that all these have been included in the government’s calculations. Must admit, it’s the first time I’ve actually felt sorry for a politician- would not like to be in there shoes at the moment. They are dammed either way.

By Prof G

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