#MSCOVID19: who has the power and chutzpah?

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If you have MS and think you are vulnerable to severe COVId-19 have you asked the obvious question? How long do I shield or self-isolate for? 

The impact of Boris Johnson’s admission to ITU with severe COVID-19 on the collective mind of the UK will be substantial. I suspect pwMS who think they are vulnerable will now go into shielding mode in an attempt to never get exposed to SARS-CoV-2. Is this a feasible long-term strategy? 

Yes, trying to never get infected with SARS-CoV-2 and waiting for a vaccine is one feasible option if this was in-line with the governments COVID-19 strategy. However, at the moment the government strategy is not clear. Without aggressive testing, case and contact finding and local quarantine programmes we have to assume their current strategy is still trying to flatten-the-curve and extending-the-tail of the epidemic until herd immunity does the job and the COVID-19 epidemic fizzles out. This strategy will take many many months to run its course during which vulnerable people will need to remain shielded. Shielding has social and mental-health consequences that most of us have yet to appreciate.

Active surveillance and contact tracing are what is being done in China, Korea and Singapore. The downside of the latter is that it takes hard work. Already in Singapore, we have seen a second flare, i.e. the peak appeared to come and gone, but once social distancing regulations were being lifted the epidemic flared-up again. 

I think there is some disagreement between public health officials, epidemiologists and politicians which is the best approach to take. It would help if we had better data on how many of the population had already been infected with the virus, but we don’t. Current estimates on the proportion of the population who may have already been infected vary wildly. A major blow is a laboratory study from Oxford showing that the point-of-care finger-prick antibody tests to see if you have had SARS-CoV-2 don’t work very well. This means we will have to resort to the doing standard laboratory tests for antibodies on whole blood samples. This doesn’t matter; it is better to get reliable data that will allow the modellers to work-out what is best for the UK to quell this epidemic and to allow us to get back to business, which for me is treating pwMS and studying MS. 

I reviewed a patient with MS in my telemedicine clinic yesterday. He has classified himself as being vulnerable, which I don’t agree with, and has put himself into shielding. He is quite disabled and hence has stopped his carers coming into his house. He is now having to battle with doing his own domestic chores, cooking his own food and doing his own on-line shopping without help. This is complicated by the fact that he is often incontinent, which creates an extra burden on personal hygiene. He has a dog that needs walking, which he is battling to do in his small back garden. His is clearly under a lot of stress. I am not convinced his position is tenable for much longer. He is just one example of how the COVID-19 epidemic is affecting individuals with MS. 

This is why we need to start planning an exit strategy for pwMS. When do we start derisking patients, i.e. taking them off the vulnerable list and managing them face-2-face, encouraging them to reconnect with their families and friends, and eventually the wider community? Do we wait for herd immunity? Do we wait for a vaccine? Do we wait for a reliable antibody test and derisk/reintegrate those that are antibody positive? Do we tell our low-risk patients that it is okay to get COVID-19 because once you have had the infection you are then immune to reinfection? Or do we wait for the government to say now is the time to get back to normal? When do we start redosing alemtuzumab and other DMTs and restart our HSCT programme? When do we restart our clinical trials? Many questions and no answers.

If I was in charge of government policy I would hedge my bets and implement both strategies, i.e. (1) case and contact finding with quarantine and (2) flattening-the-peak and extending the tail of the epidemic until we have herd immunity. Once the seroprevalence data comes in; i.e. what proportion of the population has been infected asymptomatically and have early data from vaccine trials we can then definitively commit to one of the two paths based on data.

At the moment I am very frustrated; we are fighting a tactical war without a longterm strategy in place. Sadly, with Boris Johnson in ITU will there be anybody in government, with the power and chutzpah, to make a strategic decision?

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.

12 comments

  • “Do we tell our low-risk patients that it is okay to get COVID-19 because once you have had the infection you are then immune to reinfection?”

    Why are you so confident that the virus has not (or will not) mutate?

    This is what I don’t get with her immunity – how does it stand in front of mutations? The infected population surely keep getting back to square 1, right?

    • Yep, that is what happens with viruses. But they tend to get less virulent with time. The virulent more strains tend to jump from animals. e.g. SARS-CoV-1, SARS-CoV-2, MERS, Ebola and swine flu. With evolutionary drift, immunity falls and you become susceptible again this what happens with other human coronaviruses that cause the common cold.

    • There have been two strains S (original) and L(newer more virulent one for some time), they have also got another one in China

  • P.S. We need to bring the anti-virals into the equation if there are any.

    If we can limit the virus before it takes hold then it may allow the immune response to deal with the virus and win, but this means treating the infection once symptoms start…not waiting ten days so that it is well entreched and it will be damaging to get rid of it. This is the current UK trial wait until you are in hospital before you start…whilst there may be practical reasons for doing this…It surely is not the biological sense

  • The reason why I am staying inside is I’ve read the guidance on how they intend to decide on whether to give ventilation. I think I’d be right on the edge of of whether I’d get it or not.

    • You don’t want invasive ventilation. 60% of recipients never wake up and the anaesthetic community is finally recognising that it isn’t the best way to deliver more oxygen in CoVID-19 infection. Boris didn’t get this flawed treatment during his ITU admission. Watch Newsnight on iPlayer.

  • I’ve always been told I was vulnerable due to my MS. I caught swine flu after a check up at my local hospital. Unfortunately, it lasted longer than the average time of recovery than the rest of the population. If we all reacted in the same way there would be no need for genetics research. Who is going to make a decision for a new virus when no one really knows the answer? I don’t think the government is making their decisions without the expertise of Sir Chris Whitty and co. Get ten doctors and scientists in a room and they’ll all have a different opinion.

  • Boris Johnson pushed the UK into Brexit for no good reason (or none that I can understand)
    He didn’t take Covid-19 seriously
    Do you really expect him to be much use, even if he weren’t in ICU?

    • “(or none that I can understand)”

      And are you under the (false) impression Dominic Raab will reverse or delay Brexit?

      • Of course not

        Point was, Johnson anyhow doesn’t seem the right person to take your country thru the coronavirus crisis (neither does Trump)

        I know nothing about Raab

  • Thank you for this post. It sums up the uncertainty many PwMS now face, especially those of us whose risk of COVID complications is elevated because of age, should we become infected.

    In Canada the authorities’ approach to testing is similarly unfathomable, with the added complication that responsibility for public health is shared among 10 provinces, three territories and the national government. There are differences in logistics and lab capacity but the general policy has been to restrict testing to two classes of individuals: hospital workers and those whose symptoms are serious enough to warrant hospital admission.

    This approach has been likened to asking firefighters to enter a burning building wearing blindfolds. In response, leading politicians and public-health officials in some jurisdictions have announced plans for dramatic increases in numbers of tests, but without specifying the goal. If it’s to measure prevalence at population level, testing of a statistically valid sample would be faster and cheaper than a universal campaign, but I’ve heard no explicit commitment to either strategy. What else might the goal be? Some authorities say testing should focus on vulnerable populations such as residents of care homes. This seems more appropriate for containment than mitigation. In any case, clarity on goals, strategy and tactics is wanting.

    Like Prof G’s patient, I’ve suspended my home-care visits. I’ll turn 70 in June, which puts me at a 20-25% risk of developing serious complications should I become COVID-infected. My MS symptoms – especially spasticity and muscle weakness – would also be aggravated, leading to partly or wholly irreversible progression in disability. I simply cannot take the risk. While I trust care workers to self-monitor responsibly, there remains the possibility of asymptomatic infection and transmission. Inquiries revealed that there are no plans to test these workers, who travel in the community daily, often using public transit. My needs are modest and my wife has graciously agreed to take over for the time being. I’ve also reconnected with my physiotherapists and had my first virtual session yesterday.

    We who are lucky enough to be financially stable, and to have the support of a spouse or other family members, can manage self-isolation. But what comes next, and when, and at what cost? Eighteen months of Zoom coffee dates and cocktail hours? Of webinars and livestreams instead of actual events? Of sport confined to screens? Of medical consultations and counselling by telephone? It’s hard to shake the feeling that post-COVID, the clock will restart earlier for some than for others. Vulnerable populations stand to become more vulnerable. Social and economic gaps may widen. The consequences of inattention to chronic disease will become more serious.

    People with MS, their carers, their families, health professionals and advocates should think carefully about the quality-of-life deficits the COVID pandemic has brought about. We should not be asked to bear a disproportionate share of the burdens that will be its legacy.

By Prof G

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