Barts-MS rose-tinted-odometer: zero-★s
The Barts-MS blog is having yet another existential crisis.
Have you been to Speakers’ Corner on the Northeast point of Hyde Park in London? If you haven’t I would recommend visiting and spending an hour or so watching and listening. Speakers’ Corner is where anyone, who is anyone, can stand on a soapbox and speak their mind on any topic that takes their fancy. A Victorian version of the modern podcast, but only live. Another example of an early form of social media was pamphleting. The so-called pamphleting wars started in the 1600s shortly after the printing press. Individuals and Societies used pamphleting as a means of getting their message to people on the streets. Popular pamphleteers, dare I say early influencers, were Daniel Defoe, Thomas Hobbes, Jonathan Swift, John Milton, and Samuel Pepys.
I came across pamphleting when I was preparing my talk for James Parkinson’s memorial day and discovered that Parkinson used pamphleting as means to run political campaigns. Interestingly, Parkinson wrote under the pseudonym, ‘Old Hubert’, and was a prominent member of two campaigning societies for reforms at the time: the London Corresponding Society and the Society for Constitutional Information.
Another pamphleting example I discovered whilst researching diet was by William Banting, a portly Victorian gentleman, who discovered by deductive reasoning and trial and error that a low-carbohydrate-high-fat diet led to rapid and sustained weight loss. Instead of writing a book, he wrote a pamphlet and the LCHF diet is now eponymously referred to as the Banting Diet and the practice of being on his diet as ‘banting’. Tilly Tansy, a medical historian and colleague, refers to pamphleting as being the equivalent of Twitter in the pre-digital era.
I wonder what Georgian and Victorian Londoners would have thought about YouTube and vlogging, a very modern version of the Speakers’ Corner, and the new generation of influencers it has spawned? Surely they are the modern equivalents of James Parkinson and William Banting, except with more rapid global appeal.
What all social media platforms have in common is that they allow almost everyone a platform, be it writing (Twitter, WordPress, Blogger), pictures (Instagram, Pinterest), voice (podcasting), music (Soundcloud) or video (YouTube vlogging), to compete with each other and sometimes head-on with the traditional media.
I argue that social media is the ultimate expression of a mature democracy, which is why as a liberal I am extremely concerned about the mounting level of political interference in social media and the governance of the web. Censorship and loss of net neutrality are existential threats and should be resisted. This has come to the fore during the US 2020 Presidential election and more recently with the backlash against the anti-Vaxxers.
A few years ago I was referred to at a public meeting as being an MS influencer. A modern term to describe someone who uses social media to influence the people who follow them. What makes one person become an influencer and stand out from the crowd is no different from a speaker on Speakers’ Corner who draws the biggest crowd. The most important characteristics are reputation, i.e. being trustworthy or honest, having standards and sticking to them, and being consistent. Another characteristic is novelty; being prepared to put your head above the parapet and not follow the crowds. You need to have something new to say or at least have a new spin on an old idea. The problem with this blog is that sometimes what one blogger writes is assumed to represent the opinions of the other bloggers on the site and the Barts-MS collective. This is clearly not the case and explains why we often disagree with each other. Do I really have to remind this audience that debate is healthy and that calling each other out over a bad idea is how science works?
Very few ideas are original, but how you communicate them is key to novelty and stickiness. Stickiness is an adjective to describe how well ideas stick and are transmitted in society. Less is usually more when it comes to social media. Addressing an unmet need is also critically important. The unmet need, however, is in the eye of the beholder. You can’t please everyone so you need to define your audience and be careful not to stray off target. The real power of social media is its ability to segment the world; what is important to one person may be irrelevant to another. Having a narrative is another important component of successful social media influencers. In a world where eyeballs mean everything having a compelling story to tell often makes the difference. My daughters who are both digital natives only follow people who have a narrative.
From a personal perspective, an important part of using social media includes forced self-reflection and using it as a form of documentation; a modern version of a diary. By using social media to think aloud and develop my thoughts with feedback from my colleagues and followers allows me to be less rigid in my thinking, think more laterally and be more accommodating of other people’s ideas. Having a sounding board and a collective of thinkers can only help with the adoption of ideas and the impact they have on the wider world.
I am acutely aware that there are many critics of social media platforms and the new generation of influencers these platforms are producing, but this is usually out of ignorance of the historical role social media has played in society. Be it the speakers on Speakers’ Corner, the Pamphleteers on the streets of Georgian, London, or us Bloggers of today we are the underpinnings of an old and threatened political movement called liberalism.
Social media is a genre that should be championed and protected from the rising wave of populism and autocracy. There is currently a larger debate on whether or not social media platforms should be responsible for their content or are just providers of a platform for free speech. Shortly after the US elections, Donald Trump’s account was suspended on Twitter and Facebook and Parler, the alt-tech microblogging and social networking service, was taken down by Amazon and its app was removed from both Apple’s and Google’s app stores. Parler was being used by Donald Trump supporters, conservatives, conspiracy theorists, and far-right extremists. It is clear that correcting, then deleting and apologizing for offending content is not sufficient; critics want a mechanism in place to prevent the content from being posted in the first place. Apple has only just allowed Parler’s app back onto Apple’s store. “In a letter to two Republican lawmakers on Monday, Apple said Parler had made updates to its app and content moderation policy that would lead to it being reinstated”, BBC 6-April-2021.
Over the year’s this site has had its fair share of complaints. As it is not an official website of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust who is responsible for its content? Apart from several of us moderating comments from readers the actual posts of the individual bloggers, such as this one, are not edited or moderated by an editor. The content is the responsibility of the individual writers (see disclaimer below). Despite this and as a result of a recent complaint we, Barts-MS, are being asked to take responsibility for the blog’s content. Unfortunately, we don’t have the resources or the time to moderate each blog post.
The analogy of this blog being a modern soapbox and the speakers using the soapbox having to take responsibility for their own words is not going to wash with our critics. So we have a dilemma. Do we make the blog an official publication with a board of editors who then take responsibility for its content? This will make the content boring and turgid. Do we censor and/or ban individual bloggers? This will upset their loyal followers. Do we close down the blog and let each writer go their separate ways? This will at least do away with the need for collective action. Any advice would be much appreciated.
This is not the first time this blog has had an existential crisis, however, it may be its last time.
Please note the content of this post is based on ‘Influencers’ a piece published by Professor Gavin Giovannoni on Medium on 18-March-2019.
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.
Everything that needs to be said, has been said. This blog as a resource, is beyond price. Cancel Culture needs to be pushed back. Please do not even consider stopping blogging. And please resist the kind of attempts to “moderate” that amount to the closing down of descent. From Profs G & K to MDs 1&2 to new bloggers like Sharmilee Gnanapavan and Ide Smets – all are incredible, invaluable and stimulating. What would I do without MD’s jokes? I read every blog and try to join the debate occasionally. Debate is the life blood of science, the arts, society and must, must, MUST be protected.
I agree, academics who can’t take dissent really need to take a long hard look at themselves and their research (and I say that as an academic)!
Long live the blog!!
That was, “the closing down of dissent, not descent!” Predictive spelling – pah!
I haven’t commented much before, but I have to take this opportunity for encouragement: I can say without exaggeration that your blog is the best MS research resource on the web. Period.
I myself don’t always agree with what is written here, but it is exactly this unfiltered and open exchange that makes your blog so appealing. I have absolutely no doubt that you are cutting at decades of dogma with this open approach and are pushing the discussion on MS research in a constructive way.
Please keep up the good work on the blog as you have been doing. Please do not change your publishing and interaction process.
I don’t know the details that have led to the problems currently being discussed.
But if the issue is that the blog is perceived as an official platform and is therefor associated with your employers, then I would suggest that you make it clear via a disclaimer that all content is unfiltered, not associated with an employer and are personal opinions of individuals.
If someone (higher up?) at your employer feels offended, then also consider taking the blog out of there and operating it independently. You will continue to be successful even with a different name. The positive light that this blog casts on your employer would then be lost.
If one would ask me, who is your superhero?
It’s not Batman or Superman.
It’s Prof G. and the whole Barts team.
If my wife or parents ask me what I’m doing or where I had my info from, I always say from Batman and Batman (Prof G. & K.) or one of the Robins… Also superheroes!!!
Please keep the info comming.
Dear Prof. G and all other from Barts team
I hope you understand the impact of your posts on MS community….therefore, it is almost your duty to continue with it. Be sure that posts are shared in many other countris
While questions of a certain amount of basic quality control are most relevant, I feel the role of the reader should also be considered. In science, the development of knowledge happens in a dialectic process and so it should in general life. Even the highest quality publication will never present a complete and absolute truth, simply because there is no such thing; life, society and knowledge develop constantly. So anything in the blog that demonstrates that critical thinking on the part of the reader is relevant and (explicitly) stimulates it is an important counterpart to the quality efforts regarding writers and their posts.
Perhaps an amount of self- and social control by posters could be an option? Existing writers could agree on a few simple quality criteria they will adhere to and anybody newly wishing to join the pool of writers could be communicated these criteria and asked to confirm their adherence. Then, they could monitor each other in a more informal way, as surely expert posters will be curious what their peers are writing. Finally, you could publish these criteria that everybody has promised to observe on every post page, so readers could co-monitor. Maybe even give the opportunity for readers to tick the box of any criterium that they feel is not observed. These “ticks” be evaluated not per post but, say, once a month, and would likely show up any author who did not observe the criteria. This would be a simpler, flatter and more agile system with responsibility carried jointly on all shoulders than setting up an official journal with editorial board etc. In fact, I feel very definitely that you should not go that way – there are plenty such journals already, and the relevance and charm of the blog are very much to the fact that publications are timely (I have been through journal peer review processes which took 2 years until an article was published) and the research or research-based summaries come with a well informed viewpoint that is clearly declared as an expert personal opinion. The short and concise format, too, is something that could not be maintained in a standard scientific journal, nor the easy accessibility for readers who are not themselves researchers or ms experts. As a person with MS involved in patient blogs, what the blog offers now is very much what is needed for/by well-informed patients and it would be a sad loss not to have it any more and to have to resort to formal scientific journals only.
Apologies for the late comment
This blog has been a lifeline
If I no longer catch up on the latest posts every day, it’s only because the MS seems to be under control now. This blog was a great help in reaching this state in which I’m do not think
about MS ALL the time
The blog must continue, along with the variety of opinions. MD’s contributions are essential! We don’t mind the incomprehensible science and the typos and the foot-in-the-mouth gaffes.
Please don’t censor anything
Will it help if you changed the name of the blog and disassociate it from Barts? Choose another name, such as “London MS Research”
Barts would still be mentioned in the CVs of course
One foot in mouth gaffes too many…it’s change or go
but the foot in mouth is what we love! It makes the content real and also helps patients engage with it in a way that they can truly learn and internalize the information. I don’t think as many patients would have internalized flip the pyramid without the real world writing style and straight talk you offer with the valid, scientific content. I am an expert in healthcare marketing and can support that speaking to patients in a way that they will hear actually does more to improve patient’s lives than talking to them in a way they do not understand. Your platform enables that expertise and information to reach far more people than your local speakers corner. Obviously some of us have strong opinions about this! Also, people need more of a sense of humor. It’s healthy!
Please keep the blog.
The key value is the peer-reviewed publications that you post.
The comments, good or bad, are just like at any conference where the coffee is: full of opinions each one try to get more air-time than the content presented itself!
I have learnt much about my condition and treatments from this blog but fundamentally from the publications posted here. Publications posted here are peer-reviewed, opinions, even those of the good Docs and Profs are just that, additional inputs to consider rationally.
Figuratively speaking: please keep it as a library, just outside of speakers’ corner, where I can visit if I chose to do so!
The comments, good or bad, are just like at any conference where the coffee is: full of opinions each one try to get more air-time than the content presented itself!
Yes but it is not in public
Person with MS here on the other side of the pond saying PLEASE do not stop this blog or make it “official”. The content and writing will stink. There are enough “official blogs” that don’t say it like it is and that don’t talk to the community with the level of intelligence you do – this blog is a lifeline and there is nothing else like it available for engaged patients on any continent. The data you share and your non BS style of serving it are highly appreciated and it makes a huge, positive impact to this community around the world.
I love your blog. I forward many of your posts to German pwMS (or I try to summarise the most important points in German). The up-to-date information you provide is highly appreciated (we have nothing like this in Germany). Please keep the blog running!
Oh no, I am so saddened to hear that this blog is in jeopardy. This blog was the only source I could get current information during the pandemic and it helped guide me with my neuro in States. I beg for the powers that be to see its utility and not bend to institutional pressures…. In my own experience in high profile environments, a challenge to ones responsibility and freedom to act in the workplace is generally due to balances of power, and not the actual stated problem. As I have seen, whenever someone in a position of legitimate power based on title, expert power due to expertise, and or referent power, is viewed as vulnerable in the workplace, Others are quick to try to grab available power. The root of the power grab maybe ambition, monetary gain, envy, narcissism, grudge, or plain dislike. I think your change of professional direction, Prof G, almost guaranteed someone would seek to rein in and exert control over this blog. One can understand why some might feel threatened by a group of doctors and scientists that freely blog personal opinions about health. This is too bad as the blog is an asset to Barts community and shouldn’t be viewed as a liability. In fact, this blog shares your informational power (knowledge) openly with the public. It’s A unique brave forum when medical information is often overly sanitized. Which gets me to what I think is the crux of your problem: what is real driving force behind a blog change? If someone is exerting their connection power over decision makers at Barts then what can been done to assuage their concerns? If coercive leadership style is at play, what can be presented to the decision makers to satisfy concerns? A strong leader should be able to handle ignorant complainers and whiners who whine for its own sake. Moreover, as a last resort, why is it not an option for this blog to continue under another name? Does Your employment with Barts prevent a personal Twitter account? I should think not, therefore why is a personal but joint MS blog not allowed? (This post refers to 7 workplace powers described by Sharlyn Lauby)
Thanks but this is not the issue
Please Forgive my speculation about pressures to end your blog. I’ve recently finished Anne Applebaum’s twilight of Democracy in an effort to better understand the silencing of the press, the rise of populism , and autocrats. Applebaum gives a long historical account of leaders taking over the free press, silencing academics, and pushing for calm discourse at the sacrifice of exchange of ideas. I extrapolated the psychology of what Applebaum examines on a global scale to the micro level of the workplace. I apparently have too much time on my hands isolating alone most of the time and I will leave these type of ruminations to Pulitzer Prize winners in the future. Please accept my apology for any offense taken.
Be smart enough to survive. When enemies are determined nothing will satisfy them but your head. The prime concern is appearance. It isn’t just one thing or even the latest thing. It is a incontrovertible displeasure with your personality, IMHO. Once that die is set, here is how I have seen it go down regardless which decade of my seven… the slightest provocation, all goes silent, a couple days go by, then they slit your throat and are done with you. It isn’t ability, information or opinion, it is how those are manifest; it is personality which offends.
Keep in mind those pressuring this situation will age and withdraw, eventually, if you are smart enough to outlast them. Your personality may offend a few but the overwhelming majority appreciate you and your work tremendously!
No, no, please don’t take this down. As someone with MS, I read this site regularly and particularly use it as a sanity checker for all the MS nonsense there is on the internet. It would be a very great shame to lose it.
Whatever you do, please – please – do not shut down the blog. It has helped me make important decisions which proved to be the right decisions.
Add my voice to those wishing for the blog to remain active in its current form. The service you provide to pwMS around the world is invaluable. I honestly have no idea how things would have gone had I not found your blog after the diagnosis. The amount of levelheaded, detailed information you provide has no equal, and you’ve been a lifeline during the pandemic.
PLEASE do not take the blog down. It’s been my medical beacon in a dark world of devastation this disease has left me in. I am so grateful of all the articles, of varying types, to choose from in order to help me formulate more educated decisions that I’m faced with. I am sure there are many, many more individuals in the global MS community who feel the same way.
It will be devastating to so many if this blog is censured and discontinued. It’s where I have learned so much , and then passed the information along to fellow pwMS and neurologists.
Please continue to keep us informed. We need this site and all of its bloggers.
Save the Blog!
Not sure which thesis you have of Prof hawkes, the paedophilia thing did not go down a big wow with many scientists, neuros nor the parents of children with MS. Is this what I stopped being discussed,,,do I need to destroy the hygiene hypothesis, bladder infectionns of the microbiome:-)