#MSCOVID19: vaccine hesitancy

Barts-MS rose-tinted-odometer: ★★★

She is in her early thirties and is a first-generation ethnic minority immigrant to the UK. She was diagnosed as having MS 6 months ago after presenting with optic neuritis and a subsequent spinal cord syndrome. She is due to start on ocrelizumab in the next few weeks, but we want to delay her start until she has her first dose of one of the COVID-19 vaccines. However, she doesn’t want the COVID-19 vaccine. She is worried that it will ‘affect her DNA and any children she may have in the future’. I spent a lot of time explaining to her that what she has been told about the vaccine affecting her DNA is incorrect and simply not possible biologically and therefore the vaccine will not affect any children she has in the future. Fortunately, a 30-minute phone call to this particular patient seems to have worked. She has now agreed to take-up one of our early Barts-MS vaccination slots next week.

The above scenario represents just one of the conspiracy theories doing the rounds on social media concerning different COVID-19 vaccines. It is clearly incorrect. Similarly, there are many other conspiracy theories about the vaccines that also need to be dispelled. 

The survey below done quite early in the pandemic shows that in the USA only two-thirds of pwMS were willing to have a COVID-19 vaccine. This figure is over 90% in the UK but is highly variable globally. Just across the channel in France, a recent Ipsos survey showed that just over 40% of people said they would have a COVID-19 vaccine. A recent Lancet study (see below) highlights the variation in attitudes to vaccinations across the world.

In the US survey below vaccine willingness, is associated with education level, perceived risk for COVID-19 infection, and trust in COVID-19 information sources. 

Among less-educated communities trust, like knowledge, is built socially. People are more inclined to believe what their friends tell them, either in person or on social media. Clearly, the downside of this is that conspiracy and anti-science theories spread. However, this also provides us with an opportunity to build trust where it is lacking. What we need are local vaccine influencers from ethnic minorities and other communities to come forward to have the vaccine and spread the word that they are safe and that by having them you are not only protecting yourself but the wider community from getting severe COVID-19 and potentially dying from it.

COVID-19 vaccination is about public health, saving lives, protecting the NHS and getting society and the economy back to normal or let’s hope a more compassionate new normal. 

Scientists, pharma companies, regulators, governments and the NHS have delivered us effective, safe and accessible vaccines, which is the only realistic way out of this pandemic. It is now up to the population to take up the offer of having the vaccine. We in the UK are in a very privileged position when it comes to COVID-19 vaccinations; you only have to watch the shenanigans going on politically in terms of ‘vaccine nationalism’ to appreciate the significance of this. 

So if you want to become a local COVID-19 vaccination champion please contact us (bartsmsblog@gmail.com)  we can provide you with the necessary information to educate your friends and family. I and my colleagues are also prepared to set-up and run online meetings to answer any questions you may have about COVID-19 and the available vaccines. 

Please feel free to share any conspiracy theories about COVID-19 vaccines that you have heard about. The point is not to just dismiss them but to discuss them and hopefully convince people that they are not a good reason not to have the vaccine.

We are in this mess together and we need to get of this mess together and that means not leaving people behind and vulnerable to COVID-19.

Global trends in perceptions towards the safety of vaccines in November, 2015, and November, 2018 (Figure from the Lancet)

Ehde et al. Willingness to obtain COVID-19 vaccination in adults with multiple sclerosis in the United States. Mult Scler Relat Disord. 2021 Jan 22;49:102788. 

Background: As vaccines for the coronavirus become available, it will be important to know the rate of COVID-19 vaccine acceptability in adults with multiple sclerosis (MS), given that vaccination will be a key strategy for preventing SARS-CoV-2 infections. Using a national sample of adults with MS in the United States obtained early in the COVID-19 pandemic, the current study aimed to: (1) assess willingness to get a COVID-19 vaccine when available; (2) determine demographic, MS, and psychosocial correlates of vaccine willingness; and (3) measure where people with MS get their COVID-19 information and their perceived trustworthiness of such sources, which may influence COVID-19 vaccine willingness.

Methods: Adults with MS (N = 486) living in the United States completed a cross-sectional online survey (between 10 April 2020 and 06 May 2020) about their willingness to receive a COVID-19 vaccination once available. Participants also completed measures to describe the sample and to assess factors potentially related to vaccine willingness, including demographics, MS-specific variables, psychological measures, COVID-19 information sources, and perceived trustworthiness of their information sources.

Results: Approximately two-thirds of the participants (66.0%) reported a willingness to obtain a future COVID-19 vaccine, whereas 15.4%of the sample was unwilling. Greater willingness to receive the vaccine was associated with having a higher level of education and holding a higher perception of one’s risk of catching COVID-19. Participants reported accessing COVID-19 information from many different sources. Approximately a third (31.6%) of the sample reported getting their information from healthcare providers. Healthcare providers and the National MS Society had the highest perceived trustworthiness for COVID-19 information. The perceived trustworthiness of information sources was highly associated with vaccine willingness.

Conclusion: Early in the pandemic, willingness to get a COVID-19 vaccine was not universal in this large sample or people living with MS. Vaccine willingness was associated with a few variables including education level, perceived risk for COVID-19 infection, and trust in COVID-19 information sources. These results have important implications for guiding healthcare providers and the MS community as COVID-19 vaccines become widely available.

Figueiredo et al. Mapping global trends in vaccine confidence and investigating barriers to vaccine uptake: a large-scale retrospective temporal modelling study. Lancet. 2020 Sep 26;396(10255):898-908.

Background: There is growing evidence of vaccine delays or refusals due to a lack of trust in the importance, safety, or effectiveness of vaccines, alongside persisting access issues. Although immunisation coverage is reported administratively across the world, no similarly robust monitoring system exists for vaccine confidence. In this study, vaccine confidence was mapped across 149 countries between 2015 and 2019.

Methods: In this large-scale retrospective data-driven analysis, we examined global trends in vaccine confidence using data from 290 surveys done between September, 2015, and December, 2019, across 149 countries, and including 284 381 individuals. We used a Bayesian multinomial logit Gaussian process model to produce estimates of public perceptions towards the safety, importance, and effectiveness of vaccines. Associations between vaccine uptake and a large range of putative drivers of uptake, including vaccine confidence, socioeconomic status, and sources of trust, were determined using univariate Bayesian logistic regressions. Gibbs sampling was used for Bayesian model inference, with 95% Bayesian highest posterior density intervals used to capture uncertainty.

Findings: Between November, 2015, and December, 2019, we estimate that confidence in the importance, safety, and effectiveness of vaccines fell in Afghanistan, Indonesia, Pakistan, the Philippines, and South Korea. We found significant increases in respondents strongly disagreeing that vaccines are safe between 2015 and 2019 in six countries: Afghanistan, Azerbaijan, Indonesia, Nigeria, Pakistan, and Serbia. We find signs that confidence has improved between 2018 and 2019 in some EU member states, including Finland, France, Ireland, and Italy, with recent losses detected in Poland. Confidence in the importance of vaccines (rather than in their safety or effectiveness) had the strongest univariate association with vaccine uptake compared with other determinants considered. When a link was found between individuals’ religious beliefs and uptake, findings indicated that minority religious groups tended to have lower probabilities of uptake.

Interpretation: To our knowledge, this is the largest study of global vaccine confidence to date, allowing for cross-country comparisons and changes over time. Our findings highlight the importance of regular monitoring to detect emerging trends to prompt interventions to build and sustain vaccine confidence.

CoI: multiple

Twitter: @gavinGiovannoni                               Medium: @gavin_24211

45 thoughts on “#MSCOVID19: vaccine hesitancy”

  1. Interesting that she is happy to have ocrelizumab despite the practical issues it introduces for conception, when citing fertility related propaganda with regards to the vaccine… seems like a double standard. Either she has no fear for covid, or she’s really frightened about ms… Poor lady, but reassuring to know that some neurologists are taking the time to explore hesitancy with some patients…

    I think the vaccine hesitancy will lessen with time. Covid is a hugely emotive subject, and being in the top tiers of the jcvi feels a bit guinea pig like. Whilst the general arguments for vaccine hesitancy apply to pwms, we also have our own bespoke anxieties which exacerbate everything.

    1. Re; “I think the vaccine hesitancy will lessen with time.”

      Not necessarily; France is an example where it has increased with time. The human mind can be hacked and it is difficult to unhack. When someone decided not to have a vaccine for a specific reason it is difficult to convince them otherwise.

      1. In France , vaccine hesitancy is by now deeply culturally embedded – in countries where vaccine questions are fairly new, it may turn out differently

  2. Thanks Prof G. Also as first gen ethnic minority, there are lot of ignorance that people believe which just doesn’t make any scientific sense. Another common trend is not wearing seat belts or masks as it is considered a sign of cowardice. I for one am grateful for my first dose of Pfizer Biontech last week. Also does alcohol reduce the potency of vaccine because of it’s immunosuppresant effects?

      1. jeez it’s one of the only pleasures in my life. lol.
        Due ocrevus 3 March, any Covid vaccine after 1 Feb is too late isn’t it (for the Ocrevus?)

      2. Have you contacted your MS service to see if they can offer you a first-dose this coming week?

    1. Re: “does alcohol reduce the potency of the vaccine because of its immunosuppressant effects?

      For alcohol to be immunosuppressant you have to be a serious drinker. At low to moderate levels of social consumption within the safe limits guidelines, it is unlikely to affect the immune system or your immune response to the vaccine. However, this is a general principle and to the best of my knowledge has not been studied with the COVID-19 vaccine

    2. Re: “Also as first-gen ethnic minority…”

      Get out there and tell your story of why you are willing to have the vaccine and why everyone else should.

      1. Easy said then done. Inspite of having 2 degrees in bioscience Engineering and working in AI and machine learning they reject my opinion because it’s coming from someone who happens to be the same color. Yes it’s shocking and hypocritical. Luckly all my immediate family have the sense to get vaccinated. Some of those that reject science, and not getting on my high horse, happen to be the least educated, or even can read. I guess ignorance is color blind.

  3. https://www.bmj.com/content/372/bmj.n242

    “A recent poll of 2000 UK adults by the Royal Society for Public Health1 found that three quarters (76%) of people overall would willingly have a covid vaccination—but this fell to 57% of respondents from minority ethnic backgrounds.”

    This is concerning but not shocking. I had my first Pfizer dose but my whole family is anti-covid vaxx so I was lectured until the very last minute on why I shouldn’t get it. Top 2 reasons were DNA change and the vaccine was rushed. Even my ethnic minority friends are not planning to be vaccinated. Yet my white friends are all planning to sign up asap.

    I put a picture of my “I’ve had my covid vaccine” sticker on an extended family social media group and was called crazy haha.

    I dont understand how people look at all the deaths recorded on the news and are more afraid of the vaccine than Covid.

    I would love to be a local vaccine champion not just with family and friends but in the community.

    Why is there more misinformation coming out of social media than from PHE to tackle it. Since the government cannot be relied upon, local communities will need to start doing the work and start a coordinated effort to tackle the stuff coming out. This is especially true because of the increased risk of covid among ethnic minorities.

    1. Education, Education, Education is what we need and the governments need to start thnking how they engage the different parts of the population. We are going to need champions like you. We need to understand what are the barriers and they discuss them in a way that people can relate to.

      To put it bluntly…this view of DNA change is bollocks, some of Mrs Mouses friends thought the same….you go DNA-to-RNA-to-protein…The RNA vaccine go to protein not DNA, adenoviral vector exist outside of the DNA his called episomal, protein vaccines do not go to RNA or DNA.

      The vaccines have been rushed and that has been an amazing feat. The way this was done is not to go phase I wait for the results then phase II wait for the results, then phase III and wait for the results. They did phase I/II/III at the same time because our governments took amazing risks to support this approach as it is amazingly costly, when it fails. The vaccines have been tested in more people than any of past studies in history. The trial of the Johnson and Johnson for example was done in 60,000 people. Speed yes, cutting corners no.

      In East London where we are it has been BAME ethnic minority, which is probably the majority, have been on the recieving end of doing badly and it is important that they make their decisions based on correct information. I remeber seeing a young lady saying she didn’t believe there was a virus, she was pregnant and got to see hospital first hand and missed the birth of her child, as she was struggling for breathe and life for the first week of her sons life.

      It is sad to say, if people dont enguage with this, this virus is not going away anytime soon. Maybe your friends enjoy being locked away, losing their jobs, losing their health, maybe their children enjoy not being educated in School, not playing sports, not going to music, not going to Church, Mosques, temples etc, not going on holiday. The longer it takes to do this, the more chance of viral variants to escape trearment and we will be back where we started. Whilst this it is no big deal. Maybe I remember the kids with calipers because of polio, too young to remember mumps, the tetanus jabs, BCG vaccination, every kid in the street getting chickpox and itching like hell and the one year kid who had the pox down their throat..sad that kids of today will get to remeber doing very little for 2020/2021 and who knows how much longer.

      Maybe the Government should give work to lots of actors so that they can spread the meesage in many differnt ways, serious, religious, funny, sporty etc to enguage in ways that people understand.

      1. MD1 – I find our society lacks trust in science/ scientists, lacks trust in common social values and relies on immediate personal gratification. Education is the answer for long term improvement. But for the current pandemic and the need for the most vulnerable to take up the vaccine, we need to engage people “they” (poor language) trust to set an example.

  4. This might sound like a moan but it’s just a question….Bart’s has early vac slots. I read about one nuero placing all his ocrevus patients in the extremely vulnerable category and they are all now getting vaccinated. Another story of a nuero favouring the pzeizer vac for his ocrevus patients due to its higher efficacy. Is this in the power of the nuerologist? I am sure I will be told to get what I am given and when. Postcode lottery? When Yorkshire were vaccinating many more than London they quickly balanced the scales (ok, last bit is a bit moany)

    1. When it comes to preventing severe COVID-19 it looks as if the Pfizer and the AstraZeneca vaccines are similar. You have to remember the Oxford-AstraZeneca vaccine was trialled in a more at-risk population dominated by healthcare workers who tend to get exposed to higher viral loads and more like to get symptomatic infection. So without a head-2-head study it is difficult to say one is more efficacious than the other.

      My advice take whatever vaccine is offered to you as quickly as possible.

  5. Sorry not so relevant to this blog entry but could you tell me would I be ok to have any of the vaccine if I have a bladder infection and I’m taking antibiotics?

  6. You write “She is worried that it will ‘affect her DNA and any children she may have in the future’. I agree that concerns about the effects on future children are unfounded. And integration into one’s own DNA can be ruled out with mRNA vaccines according to the current state of science. With vector vaccines with DNA, such as the Oxford vaccine, it is fair to say that integration into one’s own DNA is possible – albeit extremely unlikely. To read e.g. in this work: “Recent studies have shown that replication-incompetent adenoviral vectors randomly integrate into host chromosomes at frequencies of 0.001-1% of infected cells.”
    Source: https://www.researchgate.net/publication/11269719_Adenovirus_As_An_Integrating_Vector
    In any case, I would see the Oxford vaccination for MS as a second choice (after the mRNA vaccines). After all, there were cases of myelitis 10 and 14 days after the vaccination, including in a patient with MS. So the rate is around 1: 5000. Source: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32661-1/fulltext

    1. Yes, but show me the evidence that adenovirus affects the germline, i.e. eggs in the ovaries and sperm in the testes. Also what happens in the lab won’t necessarily happen inside the body.

      You also need to remember that wildtype adenoviral infections are common and I am unaware of any problem associated with these infections. This is very reassuring and indicates the vaccines safe.

      We also need to remember that we are a product of biological evolution that has mainly been driven by viral DNA integration into our genomes. There are numerous mechanisms in place to make sure when this does happen it doesn’t affect or threaten to the organism.

    2. BartsMS has worked very closely as a Team and the team is doing their best for people in their care and within the local environment, let’s see how it goes, this was done by taliking.

      If you are a person from BartsMS and surrounding area and get a call for a vaccine, you can volunteer to do home testing of bloods if you want, be sure to email mscoivid19ab@qmul.ac.uk

      1. I saw this on the blog and signed up. Did my baseline blood spots the day before I got the first dose of the AZ vaccine (Saturday). Am very interested in the final results of the study as a person on ocriluzimab!

    3. You could make the case that adenovirus are better than RNA, particularly in immunosuppressed people. Although the EU has backed off in relation to the Ireland issue I am not sure the vaccine export issue has been sorted. In terms of the myelitis the first case was 10 days after the first dose in someone with subclinical MS, the second one was after the second dose, and the the third case was in people who got the placebo.

      There have now been millions of people vaccinated with the adenovirus including people with a genetic background for MS, e.g. the health care workers in Scotland. This is a rare event. Transverse myelitis occurs, the risk is very low. People with MS have been vaccinated with the Oxford vaccine and people with pfizer have been vaccinated. If it occurs in 2 weeks we will soon know,

      There are people with MS in israel they will all soon be vaccinated with the pfizer jab.

      1. Was TM reported with both vaccines or just the OX – AZ? I am aware it’s also been reported in several ppl post covid infection too

  7. I’m 66 and have been getting Ocrevus
    for several years now. My neurologist, also an MS specialist, recommends that I get the vaccine five months after my last Ocrevus infusion. So I’m planning on getting it at the end of March. Hopefully there will be available vaccine at that time.
    Then supposed to wait 3-4 weeks after vaccine to get the next Ocrevus infusion.
    I’m not seeing any conspiracy theorists in friends my age. We just want to live and be able to hug our kids and grandkids again.

    1. Re: “…. So I’m planning on getting it at the end of March.”

      Let’s hope you don’t get COVID-19 before you get the vaccine. This is why I have a problem with the wait before you get the vaccine approach. Based on the VELOCE trial pwMS on ocrelizumab made an immune response when they were vaccinated 12 after dosing. In my opinion, it is better to have some immune response ASAP to protect you during the high-risk period of the pandemic, i.e. the 2nd or 3rd wave of infections.

      1. Professor G
        Thanks so much for your reply. I’m in Chattanooga, Tennessee and our health department is not vaccinating my age group yet. I will definitely get it as soon as it becomes available to me regardless.
        I hope you are doing well in your recovery from the accident.

  8. Yes I do feel these nonsense conspiracy theories need to be debunked but I feel for this initiative to have real success the real health inequalities faced by black people and the scientific racism that has been used to justify hideous experiments on black people needs to be acknowledge. Mistrust doesn’t just appear out of thin air.

    1. Re: “….hideous experiments on black people need to be acknowledged”

      Nobody is denying this, but how is this relevant to the COVID-19 vaccine hesitancy debate? You could argue that not enough black people were included in the vaccine studies, but as a lot of the current COVID-19 studies are taking place in Africa, particularly South Africa, this argument falls down.

  9. There is lots of stuff out there and much on professional looking websites. One that sums it all up is the Mercola website, a US supplement sales platform with more visitors than the NIH. Their latest claim is “Anyone with an inflammatory disease such as rheumatoid arthritis, Parkinson’s disease or chronic Lyme and those with acquired immune deficiency/dysfunction…. are at high risk of dying from COVID-19 mRNA vaccines”!!

    They use a small number of dubious anti-vaxx ‘experts’ to make claims about ADE, cross reactivity with Syncytin 1 leading to infertility, calling the vaccine “experimental” as well as lack of efficacy. (Surely the Synctin-1 issue is like calling Macbeth and a National Trust Handbook the same thing because they both contain the phrase “to the forest”.)

    Interestingly they also use the technique of false harassment, claiming that they are being persecuted and censored to gain sympathy while banning me from commenting on their many basic errors.

    Americas front line doctors are another, pretty similar and there are lots of on-line clips of health professionals against vaccination, some of which I have sat through with increasing anger. I have take notes and will write this up as a blog post and share it as they all share the same basic faults.

    For me, misinformation and disinformation is now mainstream, filtering through to anyone who cares to look for it. It is leaking into our culture and, as you opened in the post, will become a part of clinical care. I feel that the belief systems that disinformation creates is so far from reality it is almost like a clinical condition in itself.

    After all, is a patient came to see me in my GP surgery making some of the anti vaxx claims, suggesting that they don’t want a chip placed in their arm so that they can be traced and controlled for example, the world delusion would come to my mind and I would be concerned for their psychological well being. People’s minds are being damaged.
    I shall subject myself to looking again at the presentations, take more notes and write it up.

    1. “The fact is that an interconnected ecosystem of companies and data brokers, of purveyors of fake news and peddlers of division, of trackers and hucksters just looking to make a quick buck, is more present in our lives than it has ever been,” he said. “Technology does not need vast troves of personal data, stitched together across dozens of websites and apps, in order to succeed.” Cook didn’t mention Facebook by name, but he didn’t need to. It was perfectly clear who he had in mind when he posed rhetorical questions like “What are the consequences of seeing thousands of users join extremist groups, and then perpetuating an algorithm that recommends even more?” Tim Cook, Apple – speaking last week.


      Looks like Apple want to start tackling this.

      1. The feeling is that the new US administration is minded to take on the tech giants and hopefully initiate moves to curb their influence and break them up. Particularly important for Facebook. Either that or change their designation to publishers and watch them scramble to take down all the malicious material on their sites.

      2. Not sure what I think about them being considered publishers either. Solves some problems in terms of responsibility and somewhere to blame but surely a new type of social publishing will spring up if people start to feel censored. Or perhaps misinformation spreads more in private chat/WhatsApp (already does I’m certain). Have had some of those stupid chain text messages like the 90s… in recent times. I got sent an audio one the other day..
        Do you even make the ISP’s or government moderate the way we access the internet or is it a different approach and an education drive in another way? Government ran websites / portals like the fact checker stuff? No idea what the right answer is. It’s such a difficult issue in the world of a ‘free internet’.
        I guess the worry is the bad stuff just goes under ground. Or people self publish more like they used to before social media was a big thing. Geocities revamp anyone!? The good old days!
        10 yrs ago I worked at a website builder software company, the amount of dodgy content we had to keep taking down from sites doing actual illegal things… not really sure there was ever any consequences of not doing it though.
        Can’t really imagine loads of people actually using the dark web though.. especially older folk.
        And do we want to be like China/N. Korea and have a weird censored internet? Dammit I want to be able to search #WuhanSARS on Weibo!! Jk.
        It is an impossible task. My brain isn’t big enough to think of solutions but it’s interesting to discuss

      3. Actually a good example is YouTube and IG – if you watch any content where someone speaks about Covid they direct to the NHS website/official sources as a link/ad. I think that’s a really good start to tackling misinformation!

      1. Thank you for answering I just thought that when you go for the flu vaccine they will not give it to you Are ill with anything like an infection

      2. I am not a vacciator and if you have an infection then think of others but anti-biotics work within a first day. Check with you Health care team

      3. Guidelines for all vaccines say If you are ill with a fever of greater 38.5 degrees, then you should not have a vaccine. This is a pretty high temperature and it is unlikely that a person with a temp this high would feel well enough to be going out to get a vaccine.
        The reason that they don’t give you a vaccine when you have a significant infection is that firstly you already feel unwell so if the vaccine gave you side effects you would feel worse and it would be difficult to know whether you were getting seriously ill or if it was from the vaccine. Also, if your immune system is already busy fighting a significant infection then you may not make as good a response to the vaccine.

      4. Yes it seems the problems in Norway old infirm people suffered from the influence on the vacine and fever was one of the risk factors.

  10. Given the cases of transverse myelitis in the trials with the Astrazeneca vaccine and the Johnson & Johnson vaccine, would you recommend an mRNA-vaccine over an (adeno)viral vector vaccine for pwMS? (some of us may have a choice)

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