#MSCOVID19: misinformation vs. disinformation

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Barts-MS rose-tinted-odometer: ★★

One of the reasons I started blogging was to counteract misinformation and eventually disinformation about CCSVI. CCSVI which started off as a hypothesis, supported by flawed and biased initial studies (misinformation) that was rapidly spread via social media channels, which then morphed into a disinformation campaign.

The CCSVI disinformation campaign included several conspiracy theories to explain the reluctance of neurologists to accept CSSVI as the cause of MS and to refer patients for so-called ‘liberation therapy’ procedures. The latter was soon followed by unscrupulous medical practitioners who opened up treatment centres to address the so-called unmet medical need for liberation therapy. The MS scientific and medical community were taken off guard but eventually responded and performed well-designed controlled trials to show that CCSVI was not a pathological entity and was not the cause of MS. Many of these studies demonstrated that liberation therapy was ineffective and probably caused more harm than good. Over time CCSVI has faded and is now rarely spoken about or searched for online (see Google trend metrics below). 

The lessons learnt from CCSVI must not be forgotten, because the parallels between CCSVI and COVID-19 vaccine-hesitancy are remarkably similar, which is why we need to act. One way is for the medical and scientific community to get out there (1) to educate the community about vaccines and how they work, (2) to debunk the conspiracy theories about the COVID-19 vaccines, (3) make themselves available to the MS community to answer questions about the vaccines, (4) to be transparent with efficacy and safety data, (5) to admit that there are data gaps in relation to people with MS and (6) to set-up studies to answer questions and create an evidence base.

It is also important not to create a ‘them and us’ conflict. People who are hesitant about having a COVID-19 vaccine have valid personal reasons for not wanting to be vaccinated. We want to understand your reasons, discuss them and see if the science and data available is able to reassure you so that you may reconsider your position on vaccination.

We at Barts-MS are planning to host an online webinar or series of webinars to answer the many questions from you in response to the post on vaccine hesitancy. Rather than using email can you please complete the following short survey and leave your questions in the open field at the end. Thank you. 

If you are interested there is a great piece in this week’s BMJ on vaccine misinformation & disinformation. I suggest you read the article. 

Wardle & Singerman. Too little, too late: social media companies’ failure to tackle vaccine misinformation poses a real threat. BMJ 2021; 372.

Excerpts:

….. As the world looks to the new covid-19 vaccines with hope, there are major worries about how social media will affect uptake. 

….. The major social media companies are facing wide criticism for failing to deal with vaccine misinformation on their platforms.

…. Disinformation and misinformation are not the same things. When someone deliberately creates or shares false or misleading content, and they intend to cause harm, that’s disinformation. When they do so unwittingly and don’t intend harm, it’s misinformation. 

…. Before the covid-19 pandemic, social media companies had taken a hands-off approach, at least until 2016 when the Brexit referendum, along with elections in the Philippines and US, woke them up to political disinformation. And until recently they had done next to nothing to combat health misinformation. To experts, this oversight was especially worrying.

….. This laidback approach changed in 2018 when a series of measles outbreaks in the US seemed to be fuelled by vaccine misinformation. This was certainly not the first time that misinformation potentially affected a public health crisis, but because this took place in America, home of Facebook, Google, Twitter and others, it got the companies’ attention.

….. It’s only now, as pressure on the companies from governments, scientists, doctors, and the public hits breaking point, that they have changed their health misinformation policies all together. Facebook, Twitter, and YouTube all took a more assertive and expansive view of “harm.”

…. Despite this stronger stance, Facebook, Google, and Twitter are still uncomfortable accepting responsibility. They are not, they claim, “arbiters of truth,” merely middle men providing a platform to their users, the public. The companies fall back on directives from health organisations to determine what counts as false, misleading, or confusing, whether it’s international bodies like WHO or national bodies like the US Centers for Disease Control and Prevention and the NHS.

… . The decision to rely on expert organisations makes sense in principle, but in practice matters aren’t so simple. For one, scientific consensus struggles to keep pace with misinformation. Through the summer of 2020, health agencies flip flopped on guidance concerning masks and airborne transmission, while misinformation on these topics was allowed to fester.

… Unfortunately, you can’t just factcheck, label, or remove a narrative. They shape and sometimes dangerously warp how we make sense of the world. No matter how companies tackle these issues, their policies will come up short. On the one hand, even the most clearly written policies have flaws. Bad actors spreading disinformation will find loopholes, like those who posted websites that had been removed, by using new, seemingly harmless, links from the Internet.

…. As we enter 2021 and covid-19 vaccines are at last rolled out, misinformation is undoubtedly going to pose a serious barrier to uptake. The social media companies are at least showing a willingness to intervene. But people wishing to undermine trust in the vaccine won’t be using outright lies. Instead, they will be leading campaigns designed to undermine the institutions, companies, and people managing the rollout. They will be posting vaccine injury stories and providing first person videos detailing side effects that are difficult to factcheck. And, when well meaning local radio stations ask on Facebook, “Will you be getting the covid vaccine?” the comments will be flooded with conspiracy ideas and suggestions.

….. The question for the companies is whether they’re prepared to tackle this, even if such posts don’t break their current guidelines. This will sit uneasily with people who recognise that changing policies during a public health emergency could lead to a slippery slope that ends up curtailing freedom of speech. What’s required is more innovative, agile responses that go beyond the simple questions of whether to simply remove, demote, or label. We need responses that acknowledge the complexity of defining misinformation, of relying on scientific consensus, and of acknowledging the power of narratives. Unfortunately, we don’t have time to design them. So while we implore the social media companies to take a more active role, it is us, those who use social media, who need to start taking responsibility for our posting and sharing.

…. Let’s hope that, by the next pandemic, these challenges will have been tackled in ways that don’t leave us feeling as vulnerable to disinformation and misinformation as we do today.

CoI: multiple

Twitter: @gavinGiovannoni                                              Medium: @gavin_24211

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.

19 comments

  • It’s not very clear that if you have had Covid only a few weeks ago, you should have the vaccine. No one seems to know whether you can be a spreader/ pass it on after the vaccine or after actually having Covid. Nor is it clear whether you can get it again, though i should think it would be mild if you did. Shouldn’t there be a gap after recovering from it and needing a vaccine?
    Basically why do people who have already had Covid need a vaccine?

    • Re: “why do people who have already had Covid need a vaccine?”

      The diagnosis of COVID-19 is not 100% perfect; there will be false positives. Having the vaccine covers this.

      Immunity to coronaviruses wanes with time; having the vaccine boosts your immunity.

    • Re: It’s not very clear that if you have had Covid only a few weeks ago, you should have the vaccine.”

      You should wait for about 3-4 weeks to recover fist. The immune response to infections may blunt vaccine responses so it is best to wait for the initial immune response to settle. The same applies to vaccines, it is not recommended to have two vaccines sequentially after each other as the immune response to the first vaccine can blunt the response to the second vaccine; this is called vaccine interference.

    • Re: “No one seems to know whether you can be a spreader/ pass it on after the vaccine or after actually having Covid.”

      You can’t get COVID-19 from the vaccine; all the currently licensed vaccines are not made of a coronavirus, but only present to the immune system a bit of the virus protein.

      People who have had COVID-19 can get reinfected and spread the virus. Reinfection is uncommon but is increasingly being described.

      Some people who have COVID-19 may very rarely become superspreaders or prolonged spreaders and fail to clear the virus. The latter typically happens with people who are immunocompromised and their immune systems can’t eliminate the virus. The latter is possibly how the viral mutants and new variants and strains emerge.

  • Professor G, a few weeks ago you wrote that General anaesthetic often causes irreversible multiple sclerosis relapses in those with progressive/ advanced MS. Why is this?

    You say that the patient often can never return to their baseline and symptoms may become intrenched. That sounds very serious and I cannot find any blog posts on this subject.

    Can you please elucidate on this subject because as elective surgery will gradually resume, and backlogs of patients will be rushed through, information on this subject is essential.

    • Re: “Professor G, a few weeks ago you wrote that General anaesthetic often causes irreversible multiple sclerosis relapses in those with progressive/ advanced MS. Why is this?”

      I didn’t use the term relapse. A general anaesthetic can be considered to be a CNS insult and affects how the nervous system functions. It is well known in the elderly and people with neurodegenerative diseases, including MS, who are quite disabled take a knock when they have a GA and because they don’t have much CNS reserve their recovery from this knock can be incomplete.

      Even normal people can take a knock from having a GA. I, for example, had two 4 hour general anaesthetics within 48 hours of each other in early November and I am definitely not back to normal yet.

  • There is confusion about the gap between an ocrevus infusion and vaccine, why do different hospitals give such different advice? I’ve seen as little as 2 weeks to 4 months.

    • Ocrelizumab is the most difficult agent to deal with if you want to optimise benefit because of the 6 monthly dosing and the 3-12 dosing interval which is not fixed. There is no guidance from the ABN or the manufacturers and in all cases it would not be based on data. You can go to the label to get information between suggested time intervals between vaccination and dosing prior to starting ocrelizumab.

    • I confirm. It’s a confusion. Even labels are different as far as I see. German/ European labels says gap should be 6 weeks, American / British (?) only 4 between last vaccine and first Ocrevus infusion . My neuro here says 6-8 weeks. Researcher / MD from local Universitiy told me “We vaccinate every time but if you feel better wait 2-4 weeks before next Infusion”. Finally Roche told me ask Pfizer … Seems you can do as you feel best…

  • If one doesn’t read carefully, the first sentence gives the impression that the blog was a reaction to CCSVI
    Whereas the blog was running before CCSVI turned up

    • I believe one of the motivating factors was to create an information site where common stuff could be put so that the consultations did not have to be filled answering the same question to every person. But it was also made a social media arena were claims in the media could be countered quickly….I believe we were slow off the mark with the CCSVI roadshow. The CCSVI bard wrote his piece at end of 2008 (Zamboni P et al.J Neurol Neurosurg Psychiatry. 2009;80(4):392-9. doi: 10.1136/jnnp.2008.157164. Epub 2008 Dec 5). The first post on the blog was 2007 ABN DMD Guidelines on 3 rd September 2009. The first post on CCSVI by ProfG and the then DrK was 11 November 2009. ProfK wrote some article debunking the CSSVI and ProfG did the social media and got his followers like Joan Beale….he got her CDs as a present from the lab. ProfG then slowly created the MD monster and in 2011 it was tricked into appearing. We remember meeting some of the CCSVI fan club outside the GMax centre in Manchester…it was clear they were just people who wanted treatment options and some were more reasonable than others. Andy and his Daughters who was trying to do the best for his wife with MS, who we met subsequently on a number of occassions…there were others like the Nutters from Leicester…Yes we knew who they were (Mr & Mrs Nutter and particulalry Mrs Nutter)…they sent a bit of hate mail using their real name and it is remarkable how easy it is to track people down. Within about 10 minutes of Joan Beale writing a diatribe about profG, we had pictures of their bedroom….It is amazing how easy it is sometimes to find someones address and next thing you know it you have zoopla with the inside of your house. Who can forget VV Vasillis Vassiliopoulous, who would keep us on or toes and challenge us. We were their at the beginning of the faecal transplant and from the early microbiome studies it was easy to predict that “Eat Sh1” and some dogey doctors was on the way, however it seems to be the scientists you are pendling most of the myths

      • I was kind of looking forward to a good ccsvi debate. I followed it since 09, when it became famous. Discuss or stay silent. There is another option-wait. The most enthusiastic
        Proponents of this procedure are walking it back now. Ccsvi treatment may alleviate symptoms but it isnt permanent. I have read posts on nutter central (aka thisisms and msuk )and these proponents seem to be worse than before their ‘liberation’.

  • You might be interested in this view which is posted in Mercola’s website and video clip from “Americas Frontline Doctors”. I think they are bananas, but gets lots of hits on social media. For instance, they say:

    “Syncytin is the endogenous gammaretrovirus envelope that’s encoded in the human genome … We know that if syncytin … is expressed aberrantly in the body, for instance in the brain, which these lipid nanoparticles will go into, then you’ve got multiple sclerosis.

    The expression of that gene alone enrages microglia — literally inflames and dysregulates the communication between the brain microglia — which are critical for clearing toxins and pathogens in the brain and the communication with astrocytes.

    It dysregulates not only the immune system, but also the endocannabinoid system, which is the dimmer switch on inflammation. We’ve already seen multiple sclerosis as an adverse event in the clinical trials … We also see myalgic encephalomyelitis. Inflammation of the brain and the spinal cord …”

    https://articles.mercola.com/sites/articles/archive/2021/02/09/coronavirus-mrna-vaccine.aspx?ui=575eac7a2993b0df7c29370147ffd71788f4ce72ec63dc9329891e440213102e&sd=20200713&cid_source=dnl&cid_medium=email&cid_content=art1HL&cid=20210209&mid=DM790974&rid=1079406151

    • Bananas really doesn’t do this justice. Indeed this is from Wikipedia

      Joseph Michael Mercola;[ born July 8, 1954) is an American alternative medicine proponent, osteopathic physician, and Internet business person. He markets dietary supplements and medical devices, some of which are controversial. Until 2013, Mercola operated the “Dr. Mercola Natural Health Center” (formerly the “Optimal Wellness Center”) in Schaumburg, Illinois. He wrote the books The No-Grain Diet (with Alison Rose Levy) and The Great Bird Flu Hoax. On his website, Mercola and colleagues advocate a number of unproven alternative health notions including homeopathy and opposition to vaccination. These positions have faced persistent criticism. Mercola is a member of the political advocacy group Association of American Physicians and Surgeons, which promotes scientifically discredited views about medicine and disease, and several other alternative medicine organizations.

      I’ll say no more.

By Prof G

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