Barts-MS rose-tinted-odometer: zero-★’s (Black Monday #000000)
I heard last week that one of my patients sadly succumbed to COVID-19. This is not the first person with MS to die of COVID-19 but is a reminder of how fickle life can be. I have contacted my patient’s partner to say how sorry I am. The question I am asking myself is; could this death have been prevented? Yes, almost certainly. However, I suppose this answer applies to all COVID-19 related deaths.
Although the official global death toll from COVID-19 is 4.6m the unofficial estimate is 15.2m (95%CI 9.4m-18.2m), which means most of us will know someone who has died of COVID-19 (see The Economist; The pandemic’s true death toll, 5th Sept. 2021).
We should count ourselves lucky in the UK because we have a very high vaccination rate that has clearly reduced the number of people getting severe COVID-19 and dying from COVID-19. Sadly, however, being double-vaccinated is no guarantee of protection. Data from Public Health England (PHE) reveals that of all the people who died within 28 days of testing positive for the delta variant between 1 February and 19 July, 49% (224) had had two vaccine doses; almost all of these people, 220, were aged 50 or older (Public Health England. Investigation of SARS-CoV-2 variants of concern: technical briefings. 23 July).
What does this mean for pwMS? This means we are not out of the woods yet. Please remain vigilant and careful. This particularly applies to those of you who have not been vaccinated and those on an anti-CD20 or S1P-modulator, in whom vaccine responses are likely to be blunted. People with MS are being classified by the government as being vulnerable and hence you will be offered a booster dose later this year.
For those of you who have lost a loved one to COVID-19, there is a very good series of articles in this week’s BMJ on grief and grieving, which I recommend you read. Lucy Selman’s essay touched a raw nerve when I read it and many of the issues she discusses are particularly pertinent to how I am feeling this morning. It is hard, harder than you think, being a healthcare professional during the pandemic.
Lucy Selman. Covid grief has cracked us open: how clinicians respond could reshape attitudes to bereavement. BMJ 2021; 374 doi: https://doi.org/10.1136/bmj.n1803 (Published 10 August 2021)
Excerpts:
……. For people working in healthcare, grief brings home the ultimate futility of medicine as a lifesaving endeavour. Despite the best efforts of doctors, we all eventually die. Grief teaches us that medicine is about so much more than extending life.
…… Accommodating the ubiquity of sadness, loss, and grief makes some separation and compartmentalisation seem inevitable, even a useful coping strategy, for those who practise medicine.
……. Clinicians are often encouraged or required, overtly or implicitly, to disregard and not talk about their own grief in the name of efficient patient care. Despite evidence of significant grief among clinicians, patient deaths are often not discussed.
…… But sequestering grief into the “private” realm outside of medical practice can have unintended negative consequences for clinicians and patients and their families, rendering us all more alone. Denying grief, hiding it away, hiving it off to a personal self, distinct from the professional, is to deny its place in life and to deny our humanity. In the context of a pandemic in which colleagues, patients, and loved ones have died, leaving no room at the table for grief renders life inauthentic.
…… Working with death and grief elides professional barriers. It urges us to bring our vulnerability with us, meeting the patient as a person but also, crucially, bringing our own person with us. That does not mean burdening patients with our own suffering or failing to maintain helpful boundaries. Rather, responding with compassion towards patients requires us to understand and respect our own need to process emotions.
……. Grief prompts us to consider how we treat ourselves as well as how we treat the person in front of us professionally. Being open about our own experiences of grief, and showing the strength of vulnerability, is a powerful statement to patients, carers, and colleagues that can help shift society’s attitude to grief. Individually, this can bring about a deepening and maturity of medical practice. Bringing the insights that grief affords into our professional and personal lives could have huge personal and societal benefits.
MS-Selfie Newsletter / MS-Selfie Microsite
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice.
I think this article is so important. Sending you support and healing. I hope you also manage to get some time away from work …to just be, reflect and process.
I was transitioning from monotheism to atheism (losing my faith) about 20 years ago when at university and being introduced to critical thinking, random process and natural selection.
I asked myself that surely anyone in “in the know” must be atheist, namely well read individuals. Most of the surveys out of the US confirmed that scientists and academics were overwhelmingly agnostic to such matters – excluding doctors! The only sub-group of scientist and PhDs that has a very high ratio of theism and spirituality amongst its ranks. I was puzzled by that fact for a couple of years, until I read a hypothesis that doctors, unlike astrophysicists, deal with real death on a consistent basis and look for reassurance wherever they can find find it.
I am very sorry for this loss and for the pain that the family’s patient and your team is going through.
Atheist Tony
When my own parents died, I was surprised to see, in one case, the family GP, and in the other a carer, in tears. Surprised but also comforted. They too had known what lovely people each of them were and would miss them. It helps to know that for most people in the medical world we and those we love are people as well as ‘cases’ or ‘clients’.
I am sorry for your grief and that of your patient’s loved ones.
Firstly my thoughts go to your patient’s family, friends and yourself.
Thank you for your information about the 49% who had been double vaccinated because I had worked that out myself pretty much from the very vague information being provided by both the government and the Press.
Of the 49% who had been double vaccinated was there a predominant comorbidity? Obviously apart from being over 50.
As a 49 year old MSer wheelchair user who is not on any DMT and whose only comorbidity is weak lung capacity I am trying to gauge my vulnerability. I have had both Pfizer vaccinations.
With potential home Renovations due to take place in the next two weeks the builders apparently can refuse to prove if they are double vaccinated so I am concerned
Apart from vitamin D and zinc do you have any other recommendations for ongoing protection?
If someone contracts covid apart from the rest and paracetamol advice is there any medication which doctors should now be providing to try and control things? Remdesivir?
Re: “Apart from vitamin D and zinc do you have any other recommendations for ongoing protection?”
Please read my MS-Selfie Newsletter on prehabilitation: https://gavingiovannoni.substack.com/p/prehabilitation-the-ultimate-in-self
Re: “If someone contracts covid apart from the rest and paracetamol advice is there any medication which doctors should now be providing to try and control things? Remdesivir?”
Not remdesivir; it doesn’t work. I would like to say Ronapreve as the MHRA has just approved it. But at the moment we don’t know who will be eligible.
https://www.gov.uk/government/news/first-monoclonal-antibody-treatment-for-covid-19-approved-for-use-in-the-uk
Many thanks for your replies.
Early days in the pandemic we heard about interferon trials in Southampton which seemed effective as a a spray to be administered when first diagnosed what happened to this?
I just want to hear that treatment on diagnosis is close rather than waiting to have treatment when you are hospitalised.
Regarding the monoclonal antibody you mention here will that be something you are given once hospitalised and will it be able to be funded privately if somebody so wishes?
Hi,
Please ask your doctor or neuro about Amantadine. It’s an anti viral medication that is also used for Parkinsons and MS Fatigue.
Google Amantadine and Covid – they are now trialling it as many patients who are taking this med and contacted covid have not been so ill. Please Google.
Good luck x
I’m sorry 😢 life is very delicate.
Condolences to the family.
So much is being asked of health-care professionals right now that it may seem unfair to add humility to the burden. Yet without humility the hard-won knowledge and skills of medicine will never be applied to best advantage. Thank you for sharing your thoughts on the uses of grief and “the strength of vulnerability,” and for the link to the BMJ package.
I know that this post is not primarily about this but:
“Data from Public Health England (PHE) reveals that of all the people who died within 28 days of testing positive for the delta variant between 1 February and 19 July, 49% (224) had had two vaccine doses”
Approximately 50% of deaths from Delta were fully vaccinated elderly? So basically vaccination offered no protection at all?
Not correct. For the delta variant, the double dose of the AstraZeneca vaccine offers ~70% protection and the Pfizer-Biontech vaccine ~85% protection. The deaths are in the 15-30% who don’t get protected. It is amazing how people don’t get the fact that vaccines are not 100% effective. Without the vaccine, the death rate would an order of magnitude higher
Just to add: a high vaccination rate means more vaccinated people getting sick (in absolute numbers).
Also, e.g. 100 people, 80% vaccination rate: 5 vaccinated and 5 unvaccinated die. That’s also 50/50 of the deaths, but relative to the groups 6.25% and 25% respectively.
Great clarification!
The reason for my ‘question’ is that I am afraid that many will jump to the wrong conclusions. (I see it from the answers on my own Dutch blog-posts about the subject).
I wanted to point out that reporting such numbers (even though accurate) can easily lead to misconceptions.
I personally would probably rephrase it to make it crystal clear…
But again, that’s not what this post is mainly about… I’m sorry for the loss…
No because if it offered no protection more people would be hospitalised and dying
Thanks @Prof G and @MouseDoctor, I am aware of the science. Maybe it was the English I didn’t understand.
Copy-paste:
“Data from Public Health England (PHE) reveals that of all the people who died within 28 days of testing positive for the delta variant between 1 February and 19 July, 49% (224) had had two vaccine doses”
So 457 people died in the UK from the Delta Variant in five months…”
What I read (please tell me where I misunderstand):
1. Between 1 Feb. and 19 Jul. people died due to the Delta variant.
2. Of all the people that died 49% (224) had two vaccine doses.
Obviously, this is not correct (more people die in a week in the UK). I am obviously not some vaccine denier, actually, we spent a lot of time working on providing Dutch MS patients with information about vaccination: https://www.msinbeeld.nl/hoezoveilig/
I just wanted to point out that people might get the wrong idea about vaccination efficacy after reading that paragraph.
In july the death rate was low and I am guess this is in people where the virus was sequenced and delta had begun to increase.
Please read https://www.covid-datascience.com/post/israeli-data-how-can-efficacy-vs-severe-disease-be-strong-when-60-of-hospitalized-are-vaccinated
It’s about Israel and Pfizer but similar logic applies to evrywhere with all vaccines.
Very informative, thanks for sharing!
What of those being infected & recovered, vaccinated twice and recently started a SP1 modulator? Will this history give any protection?
If you have been infected you have deal with it before…there is no evidence S1P1 increases risks
Very similar to my current situation.
Can I ask if it was fingolimod? If so, why fingo & how are you getting on with it?
Questions only from personal curiosity. Thanks
Im sorry about your patient, but I guess it was inevitable that you come into contact with such a patient in such times, none the less still very upsetting for all concerned; the circle of life is indeed a viscous one.
Dr Vernon Coleman asserts that medicine hasn’t improved since the 50s…it must be very frustrating for you…there are only two certainties in life eh The Don.. death and taxes eh? But the journey to grave should at least have enjoyable bits?
In these seemingly hope starved times; I’d be interested in debating hopeful things like LDN ? (Why has this not been investigated further?!) which seem compelling, positive and realistic to me.
What do you think of ldn?
And for anyone intrigued I’d recommend the LDN documentary – views on the long term use of DMDs interesting; and seem to offer hope; positive MS experience and sound logic?
Thanks.
Have you read our previous posts on LDN? Simply put LDN is into the search engine and there is quite a lot that we have said already about it and MS.
Despite all our best efforts we all eventually die.
Neil Degrasse Tyson : ” It has been said that the first person who will never die is now alive ”
https://www.facebook.com/neildegrassetyson/videos/792127861644824/
Goes to show you should not believe everything you read….I suspect Mike Tyson makes more sense:-)
I’ll get to the Existential stuff in a bit…
I too (like Dr. Platel) was very confused about the 49% explanation, and thought perhaps we were all headed back to the beginning. I’m with Platel- there must be a better way to make the point. (It could make a great question on an exam, however.) In addition, it still confuses me that vaxxers and anti-vaxxers emit the same degree of virus, because at least here (US), while admitting that data, in the next breath they say that getting vaxxed is the only way to stop the spread. (Doesn’t make sense to me.)
Existentially, “Life sucks and then you die.” We can only change the first half of that equation, a bit. MS might make it worse, but for the majority, I would suggest, it doesn’t have to. Purpose and goals give way to short celebrations, at least for me. I prefer the term Agnostic. Both theists and atheists claim to know the unknowable. Betting the odds, however, is different, and I haven’t seen anything yet to make me bet against what appears to be obvious.
God Bless everyone (almost), and especially those who suffer too much and unnecessarily, including the ones you mentioned. (I say it anyway, “God Bless”.)