An existential crisis

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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.

Orator at Speakers’ Corner in London, 1974. (Image from Wikipedia)

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. 

Conflicts of Interest

Preventive Neurology

Twitter

LinkedIn

Medium

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.

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.

91 comments

  • “This is not the first time this blog has had an existential crisis, however, it may be the last time”……I am deeply saddened by this statement, yet not surprised given recent events.

    Might I suggest a pay/fee site? That way, you will not be as constrained by the issues you describe in this post. The monthly fee could equal to cost of processing the credit card payments (

  • Perhaps the issue here is whether or not the blog is helpful and the answer surely has to be a big big YES. For me it is a bridge between the inaccessible lofty world of biological research and actually living with MS on a day to day basis and making the right decisions needed to stay as healthy as possible.
    I would feel the loss of the blog personally and it would diminish the “MS community”. The blog is so important that perhaps some thought needs to be given to governance, maybe an annual oversight meeting, or creating a category called “feedback”, an opportunity for those who feel the comments facility is not enough to make a point. That would be hard work though and perhaps all that is needed is a bit more tolerance.
    But surely carry on. Please.

  • Please leave it as it is – perhaps with some gentle moderation. It is a really important resource and a source of hope – a commodity that gets left out of more rigid structures.

  • I can’t quite put into words how important this blog has been to me. As a person who has received cladribine for my Ms, the information I have obtained from here has been life changing, in that my anxieties about the drug, and the future have been taken away, due to the faith this blog has shown in the treatment. It may be misguided, but I don’t care. It’s priceless. I don’t really understand half of what is written by the contributers, but that doesn’t matter, I get enough, and that’s because of the honesty, humour and skill with which the information is conveyed. From a selfish view, please do what you can to keep this blog as it is.

    • I agree wit joelgarner, as a scientist with MS who decided on cladribine based on my understanding of the published research and information on this blog I totally agree. As a biomedical scientist, more and more I am hating the attitudes and arrogance of other scientists, their lack of understanding patients perspectives and lack of collaboration with clinicians. I love the science and clinical perspective of this blog, and the honesty and the humour. It I clear that the majority of the readers who participate in the discussion really appreciate the blog.
      I would be happy to act as one of a team of moderators if the blog had shape-shift to a non-Barts blog.
      Seriously, some people really need to work out what is important- them (not) or open discussion of information.

  • Your blog is highly appreciated. Also, the alternatives, such as blogs or ms society websites etc. does not represent or provide what you guys have going on here. Please keep the blog running.

  • Please keep the blog going. It’s trustworthy, relevant and up to date. Time and time again I have read an article on the Barts Blog, formulated my own opinion and then been able to succinctly answer queries from my MS Nurse. She has often commented that this has saved her time explaining complex issues; it has also saved me time as I have already had my thinking/deliberating time when I gave got the phonecall. I feel Barts Blog is a vital weapon for me as an individual MS’er. More importantly it is an objective, impartial, fact-driven tool for the MS community. A life saver. Where else could we get such immediate access to clinical research papers? In the pandemic Barts Blog it came into its own. I applaud everyone involved in it. You all deserve medals.

  • As an immigrant to another country, with another language, and a different healthcare system – the MS Research blog allows me to keep track of latest developments and trends in MS.

    I no longer have a specialist MS neurologist – my local hospital only has a general neurologist. He’s good – but not a specialist. MS as a condition is far less prevalent here. Across Spain as a whole incidence is lower than the UK but here in Lanzarote they have 100 cases in a population of 152,000 and most of them are going to be immigrants, we’re next to the Sahara, there’s no shortage of sunlight so people just don’t seem to develop MS…

    I have no idea if medics here are “across” the latest changes and research though anecdotally they don’t seem to be… or if they are even receptive to challenges to their entrenched beliefs (entrenched beliefs such as MS is relapses and lesions, “smouldering” MS doesn’t exist etc). Worse is what I see in the Spanish language Facebook groups for MS patients. The level of “informedness” of the average MS patient out here is where we were in the UK 10 – 15 years ago.

    So – with that in mind – this blog is a resource and a lifeline for me and I would personally miss it quite profoundly.

    Your post raises serious questions and makes serious points.

    Firstly comparing the minor hiccups on here with the mass exodus of right-wing, fascist nuttery from Facebook to Parler – followed by their absolute refusal to moderate “free speech” – is to my mind a false equivalence. These people were arguing against the existence of science, arguing for policies that leave millions of people (including PwMS) massively vulnerable to a pandemic that kills them. Lives were literally on the line there.

    Are you seriously comparing that with a MSR contributor’s inability to engage brain before hitting “Submit”? 😉

    “Over the year’s this site has had its fair share of complaints.”

    That means you’re doing your job – stimulating debate and thought about MS rather than allowing people the “comfort zone” of mindlessly trudging along. Mindless trudging doesn’t work when brains are at stake and patients are experiencing neuro-degeneration while being ignored by their neurologists (maybe not Barts neurologists but MS patients do exist elsewhere and treatment elsewhere leaves plenty to be desired…).

    “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?”

    Contributors, moderators and posters.

    “Apart from several 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).”

    Indeed.

    “Despite this as a result of a recent complaint we, Barts-MS, are being asked to take responsibility for the blog’s content.”

    Perhaps you need a second, non-branded blog (eg non-Barts) and any contentious content gets moved over there?

    “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.”

    That’s a pity. Why ever not? Are we no longer allowed an open forum for posting and exchanging ideas? Do you realise how vital it is that PwMS are heard and allowed to interact with the professionals that treat them OUTSIDE of the consultation room?

    When we’re in the consultation room, we forget half the stuff we were going to ask (because MS affects memory) or we don’t think up responses / questions till after we’ve left (because MS affects speed of thought and anyway this is big stuff). Sometimes we have a pandemic going on and can’t even access our normal routes of access to “the professionals”.

    Sat at a computer screen / tablet / phone, we can formulate ideas and hypothesise and pose questions to world experts – come up with angles and points of view you might not have considered – become interactive in the way you treat patients. So instead of that divided “us and them” role, things can be more fluid. I’m sure some of us patients have at least SOME expertise in areas that might be relevant – and sometimes people “outside” the neurology fishbowl can add a perspective that would otherwise be lacking in the “us and them” model.

    With this blog “Us and them” becomes “Us and us” – all of us – patients, families, friends, doctors, specialists, fighting MS as a team.

    “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.”

    and destroy the dynamic and rapport you build with patients. Some of your posts are allowing MS patients to feel, for the first time, that they have agency over their condition – that they can DO something as well as just receive medication and advice. Is the benefit of that LESS than the potential risk to the Barts-MS’s reputation?

    “Do we censor and ban individual bloggers? This will upset certain followers.”

    This is tricky. Maybe you need to moderate more closely. Maybe people need to engage brain before hitting “Submit”. Think before you post, “what if my boss / mum / whoever saw this?”. Also – NOT censoring / banning has clearly upset some people but we don’t necessarily have the right to NOT be upset / offended by what we see / read… it’s a balance though…

    “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.”

    But it will irreparably damage the rapport you have with the wider PwMS community… sending us back to our wheelchairs as it were… For me this resource is far too important for you to close the doors like that but you should do what you must do…

    • Agree with engaging brain before opening mouth (hitting submit).
      But then this could be seen as part of the cancel culture if done retrospectively. As long as discussion is respectful (as it mostly is on this blog) then it should be allowed.

  • Sad to read this, I’ve visited the blog most days since I became an ms patient 7 years ago. I have done so, because it synthesises and delivers the most up to date information available in a way that is accessible to a lay reader.

    I’m surprised at the level of concern regarding offending readers. It is obvious that one of the aims of the blog is to push the agenda of your research group, from a patient perspective this can sometimes cause anxiety, as these posts can lack balance and are not reflective of the nhs care we all have access too. Our inability to access the level of care you promote can dredge up all the fears pwms bury away, however once you accept that the ideas you promote are not the standard of care but are about promoting future improvements via research, the whole thing is hugely positive for everyone. Hence why I think the accolade of “influencer”, is entirely appropriate.

    Ultimately people are increasingly sensitive, and I’m not surprised you have had at least one serious complaint. Pulling the blog, would be against the liberal ideals you wish to promote and over editorialising will make it even more hard work for you guys :-(. I think the people who are complaining just need to go elsewhere for their information, this could possibly move achieved by putting a link alongside the blog post to the parallel topic on the ms trust website. This would allow snowflakes to access boring back-heeled balanced content which is unlikely to cause offence, whilst those of us who want thought provoking content can continue to access it via this platform,

    Thanks again for what you do, as I have said on many occasions, this blog remains my pay important coping strategy!

  • The independence of the blog is essential. Some years ago I had a bad relapse and spent a lot of time alone reading research papers, trying to get my head around what was happening to me. The concept that my immune system was randomly malfunctioning seemed ludicrous, but I couldn’t find a neurologist who supported anything other than the traditional dogma. Prof Chataway eventually directed me to Prof G and the blog. Finally, I am not alone.
    I have developed a few heretical ideas: MS is caused by EBV. Statins don’t work by lowering cholesterol. Iron load causes heart attacks. The blog has discussed the former two and preventing heart attacks through regular blood donation or iron controlled diet isn’t relevant to this blog.
    Complaints indicate that the blog is serving it’s purpose, by allowing ideas that challenge conventional wisdom/dogma to be discussed. If the complaints stop, then the blog has become too pedestrian. Keep it up!

  • NO NO NO! to all of the last points. This actually makes me so annoyed that a complaint could mean any of those things! We’re all adults here – as you said “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? ” – exactly! And just generally in life, we can have differing opinions, ways of communicating them etc – censorship is not the way forward!

    From all the comments already – I also reiterate this blog is the most important resource to many of us people with MS and also our families. The easy to read, personable and digestible way the posts are written – often with humour too. That’s what we need. There is nothing else like it on the internet!

    Surely us people with MS – our opinions matter the most. It’s us who have this disease and this blog is a lifeline for many of us.

    I think the solution – which seems to be in place – the disclaimers at the bottom of the posts – surely this is enough?

  • I’m in complete agreement with the others – please don’t close the blog down. I have no advice on what you could do, just the following thoughts on why it’s important to me as a person with MS:

    I discovered you around this time last year (Happy Anniversary!), six months after diagnosis, and as Colin says above, your posts provide an accessible way for us laymen to understand what is happening in the world of MS research and whether you think it has legs or not. I’ve not found a comparable site elsewhere. (OK, I watch Drs B and B on YouTube sometimes and they too are very informative, but as a Brit I naturally gravitate in this direction).

    For me personally, the information you provide has been invaluable. You’ve answered my questions, I’ve had support from other blog-readers and you’ve given me a much needed kick in the arse to take responsibility for my own health through diet and exercise. I like the warts and all approach – I prefer to know the bad stuff too – and you gave me the confidence to tackle my neurologist about my DMT (haven’t won that battle yet, but still working on it).

    I also like the feeling that you listen to us when you ask for our opinions. I don’t know how much our comments really influence your clinical practice and you are only one team in one city in one country, but having a disease that we mostly have little control over, it’s nice to feel that somehow, somewhere someone is listening to what you say and taking that into account.

    • ‘Moral courage is a rarer commodity than bravery in battle or great intelligence. Yet is is the one essential vital quality for those who seek to change a world that yields most painfully to change.
      The late Robert F Kennedy 1968

      GG and the blog. You have that courage. Don’t loose it.

  • As a pwMS I wouid agree whole-heartedly that this blog is a vital resource. In a world where understanding of MS is changing, and research into new drugs and treatments is on the move, a site where you can be confident that the writers are well-informed, but that a lay audience is expected, really matters. In the context of so much wishful and inaccurate information being available elsewhere, this site is so important. (I had a long battle to get alemtuzumab, but I did in the end and I would never have succeeded without the information I learned here.)

    I can see that managing resources would make formal editorial structures difficult, but giving offence needs avoiding. I wonder whether a more informal setup might protect against future mis-steps.

    One thing to do might be to draw up some formal guidelines for all posts that contributors would sign up to. Another could be an obligatory interval between writing and publishing that gives people a chance to reflect. The internet does almost structurallly encourage people to publish without thinking, and countless people have come to regret this.

    I really hope it will be possible for this blog to contine

  • People will always complain about something. Please keep the blog – surely if someone doesnt like it they just need to subscribe to something else instead?

  • I like the fact that each contributor writes with a “different voice.” It’s refreshing and I like the mix. I wouldn’t change anything, but you can always add a disclaimer at the bottom.

  • I wonder what ‘fair share’ equates to in terms of the readership size. Perhaps it’s not possible to know the size, whereas it’s easier to count dissenting voices, so is your response proportionate? I like the idea of a membership, because I think it would make the site more self-selecting. Signing up to conditions, with a little bit more formality than just giving your email, would discourage flippancy. I’m sure that ‘out there’ are people/organisations well versed in writing guidelines for such documents that would effectively build you a firewall. The joining/annual fee would need to cover set-up and maintenance. You don’t say whether complaints ever come from people other than patients – I know you write for other audiences e.g. academia and pharma and maybe there is another agenda around this? Obviously, though, it’s the patient group who would be most affected by closure because there is simply nowhere else to go.

  • Please DO NOT close the blog down, let it continue to run in it’s current format.

    It has helped to really broaden my knowledge about my MS.
    Sometimes certain articles can make for a difficult read, but I would rather that way.
    You take the rough with the smooth.
    The emails I receive are highly informative, refreshingly different and honestly written.
    I can’t think of one other MS information source, that does a comparable job.

    If I had to solely rely on my annual check-in appointment with my neurologist, my knowledge would not have moved on one jot. By contrast, this blog coupled with my own research has put this right.

  • I have wonder why you started putting the disclaimer. Anyway, no to closing the blog – it quite literally saved my life in helping me make the right decisions to deal with the MS. Would prefer it if you left it as it is as I want to hear all the thoughts, whether I agree or not. There are already other avenues people can look at if they want official publications.

  • I have found these blogs really helpful. I am a pwms. Some are too complex, so I delete those. Others have been so educational and really helped me to make informed decisions in relation to Covid and MS. It’s great to hear about research results too. I usually read what it’s about and then skip to the conclusion.

  • I am sorry to here that there’s trouble at t’ mill. I value the information on this blog very highly and am grateful for all the hard work that goes into making it such a valuable resource. I do hope that a few well-connected grievance-merchants do not manage to sink the ship.

  • I’m confused about what MD has written that could have been so damaging or offensive. Has he advocated violence? Made racist or antisemitic comments? Hardly, I think? I have quite often been annoyed by the content of this blog when it hasn’t chimed in harmony with what I feel/think about MS research, or indeed my own MS. But that’s one of the reasons I regularly read the blog. I want to challenge my ideas and convictions, because I certainly don’t have all the answers for everyone and respect the fact that there is a myriad of opinions, perspectives on this disease. I want to be open to consider new ideas, opinions. If I am offended or annoyed, I don’t have a problem going and making a cup of tea and letting be. Isn’t it healthy to have free discussion? This wretched disease desperately needs researchers, medics, professors etc. who call a spade a spade and speak freely. Don’t be silenced. Please.

  • If you have to moderate your comments, my personal opinion would be to not allow comments. This may seem extreme however, I personally would rather read your content than not have access to it.

    Those of us who may potentially disagree with a blog post is just that, then stop reading it and move on. Yes, having a healthy debate is good but some are not there to have a healthy debate but rather a war over differences of opinions.

    Keep your blog up and running if possible. If it becomes too much, a lot of us will be disappointed but will understand.

  • What is the problem, exactly? That people are complaining?

    Let them. You cannot exist on the internet without someone getting angry at you. This is normal. If you (or one of the bloggers) said or did something wrong, apologize and move on. I really don’t see a problem that needs to be fixed here.

  • I’m a pwMS living across the pond in the U.S. and know many others here who, like me, would be absolutely inconsolable if you took this blog went away. It’s the only place to go that offers opinions and information not scrubbed free by big pharma and idioted down by MS Societies for the little people trying to actually live with MS. Please, please don’t let the meddling, small minded, can’t take a different point of view, you hurt my feelings and stepped on my toes researchers/big brother is watching you people take you off the road. We NEED you like O2, you breathe life into the mix and arm us with truth.

  • “This is not the first time this blog has had an existential crisis, however, it may be the last time”….

    This blog has increased my knowledge of my MS and I’m sure I am not alone. To lose this resource would be a loss to the MS community in so many ways. I do not have any new thoughts to add to the ones expressed.

    The people who are critical of this blog and suppressing debate need to engage brain before pressing submit. They can retain their anonymity, feel smug even virtuous but they are responsible for depriving a lot of people of some valuable information possibly not available anywhere else.

    Please please please don’t stop this blog

  • Please don’t close down the Blog. I like the current format. There are plenty of places to get information that is “controlled” by some sort of editorial board. What’s wrong with having a number of different experts expressing their views and introducing recent research with their own comments? I don’t read a post on the Blog and think it must be “correct” and that I have to agree with it (although I often do). It is not as if this Blog pretends to be anything other than it is, a Blog in which people with connections to a particular establishment publish posts on their thoughts and the work they are doing. We can read material which has been honed to suit particular interests’ wonts in many places. It’s a free world – or at least we are supposed to be in one.
    I have obviously missed some sort of ruction that has led to this ‘existential crisis’ and I agree that making the Blog official will make it boring and turgid. But why would the instutution of Barts have to take responsibility for all the posts or censor them? They never seem especially ‘outrageous’ and the writers take responsibility for their thoughts and opinions, explaining their reasoning. What more is necessary? It is refreshing to read ‘real’ thoughts and views and not material carefully crafted to appease particular interests and dare I say it, egos.

  • Just a thought… Where can we make an official counter complaint? #savemsblog
    And if MD gets banned I’ll help rally up the readers with some placards in Whitechapel !!

  • Francis Peyton Rous ( Rous sarcoma virus)

    In 1911, as a pathologist, he made his seminal observation that a malignant tumor (specifically, a sarcoma) growing on a domestic chicken could be transferred to another fowl simply by exposing the healthy bird to a cell-free filtrate.[3][4] This finding, that cancer could be transmitted by a virus (now known as the Rous sarcoma virus, a retrovirus), was widely discredited by most of the field’s experts at that time.

    https://en.wikipedia.org/wiki/Francis_Peyton_Rous

    I took the world almost 50 years to accept is ideas

    Rous finally received the award 40 years later at the age of 87; he remains the oldest recipient of the Nobel Prize for Medicine or Physiology.[5]

    You gonna get oposition whenever you go against the prevailing mentality

    Even the inverted piramid treat early and agressive ,viral hypotheesis

    People dont want to change its also human nature

    I am fat ,my legs hurt ,i am tired …blabla bla….Why get up and move?

    Sure you` re not the only one suferring criticism and suspicion

    It Happen in the past it will happen again

    Who know maybe you will be the (Peyton Rous) of ms and Ebv hyphotesis (I wish so)

    With blogs with twitter with medium ,with papers ,reviewers ,youtube etc

    Dont give up your thought even if they will be wrong in the end

    “Go for it even if you make a fool of yourself”….Art Blakey

    Success is not final, failure is not fatal: it is the courage to continue that counts.” Winston S. Churchil

  • The blog has been an invaluable source of what I would consider the most reputable MS information available to PWMA. The data and contributions here have given me the tools and confidence I needed to finally deal with my disease. Thank you. If I could make any suggestion it would be to leave the politics or political philosophy out of the blog as it detracts from the disease issues at hand, lends itself to alienating those who don’t share the same political ideology, and can create the wrong kind of debate for this great forum.

  • I would be very sad to lose the Blog. It’s brilliant. Provided you have a disclaimer to say the opinions expressed are those of individual contributors, blah blah – what’s to stop you? there’s so much drivel/offensive comments on FB etc. that are not challenged. I challenged one recently that smacked of racist hatred by reporting it – FB came back to say it was OK. 🙁 Maybe we just need to “toughen up” and accept we’ll come across stuff we find objectionable – better than to lose a valuable and original resource like this one!

    • Exactly! Think of all the Covid-denying posts on Twitter and the like, often from commentators attached to well known publications with a host of followers. They use flawed reasoning and ‘evidence’ (if any) and go on churning out their wisdom with impunity. Personally, I find it offensive and also think it is tantamount to inciting dangerous behaviour but I accept that in a free world if I have the right to say something, so do they and that if I don’t agree with it I can ignore it or point out what I think is wrong with the ‘reasoning’. It takes a lot for somebody to lose their voice on social media no matter how idiotic and dangerous that voice is. Compare that with this blog … there is no comparison. Why on earth should this blog be subject to censoring when stuff like that is part and parcel what is out there every single day.

  • My wife got diagnosed last July. We were feeling very low after the diagnosis. Both of us are scientists and our first instinct was to learn as much as we could. We have scoured large parts of MS internet and this blog is easily where we learned the most. Reading this blog is part of my daily ritual. This blog does not serve just its readers but a wider community. For instance forums like reddit, discord and er maybe in even facebook have gotten more evidence based thanks to this blog.
    I recently had a chat with MD-PhD MS researcher and he was surprised how relevant my questions were. We learned to ask the right questions thanks to this blog. Whatever the misgivings, please consider continuing the blog. Ide, Sharmilee and newer bloggers are pretty great too. Would be shame if they are not given the opportunity to share their learnings, and we not able to learn from them.
    In case help is needed for comment moderation, would be glad to chip in as a volunteer or pay a price for you to get help.
    Thanks ProfG, MD and all the wonderful folk here.

  • Prof G you have re-evaluated a lot since your accident and with your move into prevention and the new blog I wondered whether this blog would fade away or suddenly disappear. At that thought I felt briefly panic stricken. The idea that pwms would lose this resource seemed catastrophic. We don’t have anything else like it, we would be up the creek without a paddle. However, I quickly reminded myself that nothing stays the same, everything changes so that kind of attachment isn’t helpful.

    There are other resources and neurologists elsewhere on the internet.

    But I don’t want to trawl the internet looking through endless papers I don’t understand. I don’t want to have to try and work out if they are good science or not, because I don’t know how to do that. I want to read the opinions of the contributors of this blog. I want to learn and be up to date. I want the opportunity to ask questions, even if they mostly go unanswered, it doesn’t matter because I learn from the other reader questions that do get answered. How will I be able to fight off family and friends waving pointless newspaper articles about the latest cure without MD’s evaluations and insights?

    I missed the faux par, I don’t know what happened. What I do know is that the writers on this blog have made a huge difference to the lives of pwms. Who are the critics that would see our resource dissolved, will they be providing a replacement, do they care about us at all? Can you publish their name and contact details? Will they be responding to these comments? Perhaps they could write a post of their own explaining their position on the matter.

    I have no advice, I only ask that if at all possible please could you find a way for the blog to continue. Thank you.

    • “I missed the faux par..”

      Think it was some research was judged as “same old..same old..see you next year”
      Seems rather..very minor…but it’s who you offend in such matters.
      Probably higher ups never liked the blog and now trying to use this….

  • We all have brains, albeit those of us with MS: damaged brains and can use them to make decisions =
    Don’t like it, don’t access it.

    I like the others would be devastated if the Blog were to disappear.
    MS takes from us constantly and repeatedly, and our medical teams change, whilst the Blog is the exact opposite in providing and sustaining and being reliable – in accessing it daily I know there’s something here to benefit me = PLEASE DO NOT TAKE THIS AWAY FROM US TOO!

    It is surely easy enough to make consistent use of the disclaimer at the beginning or end of each post and to evidence the huge value of the Blog to all naysayers and ‘industry ‘lawmakers’

    I’ve no doubt some of those who’ve provided these excellent replies would be prepared to meet with any relevant persons to explain in person what this Blog represents to scientists, clinicians and most especially to those of us somewhat at the bottom of the pile – PwMS.

  • There is no other blog like this one. Losing it would be a massive loss to the MS community globally.

  • PLEASE – I urge you to continue with this invaluable blog. I have not had an appointment with a neurologist for nearly two years and feel so alone at times trying to make sense of this bewildering disease. I have learnt so much from the posts on your blog, I cannot thank you enough and all your contributors. Let’s all aim to show far more kindness and understanding towards each other with far fewer complaints!

  • In the first year after my diagnosis I’ve read thousands of ‘articles’ about MS on the internet (9 years ago).
    Then I discovered this blog and stopped that. The amount of ‘breakthroughs’ mentioned is staggering.
    Something about feeling being taken serious by been giving good info.
    thank you

  • My advice would be to make the blog no brand as the complaints seem to be addressed to BartsMS, but most importantly keep the blog alive in any suitable form.

    Please note that several blog exist in the internet. Many of them are ridden by posts saying “trust your neurologists they know the best for you” and then people are given hope & CRABs only to get one or more relapses few months later switching between low efficacy treatment until they switch to high efficacy and wonder why they didn’t do that before. The answer is simple: they are not properly informed and they are probably scared by exaggeration of side effects and risks. A friend of mine was scared by the fact that the high efficacy drugs have an impact on immune system after a relapse that made him walk not far than few hundred meters.
    Here, this blog stands out. It provides clear info, context, history, the real picture about several drugs, perspective and it allows to make a sound evaluation of advantages and disadvantages. This may be considered as given but it is not. Also, providing insight on near future trials and studies allows also some planning of therapies and switching between drugs. Another important point is that this blog, a channel of information held by very skilled people, shows that research is actually moving on and things are not left just to money and pharma timelines and interests.
    So keep going!!

  • This blog is brilliant. It is well informed, prepared to take on difficult subjects and to take an independent line. It is a home of free thought . As a professional journalist who has written for the Guardian, and worked as a producer of disability programmes for BBC2 and ITV I would defend all free thinkers and those who communicate openly and freely like yourself . Keep the blog going, don’t give up. We need you.

  • This blog got me through covid. Sounds dramatic, but I literally depended daily on the information you provided. It led me to make my own mind up about my risks and treatment and make some pretty big decisions that I am SO grateful I made due to the information you provided.

    Sounds dramatic, but it’s true.

    You can’t say anything these days without offending someone.

    I will genuinely miss MD and his posts if you guys go. Please don’t go!!

  • As a patient I’m a daily reader since 2017. Didn’t miss a day. Whatever news it is, it is always reassuring to read about a bunch of clever and fine people with bright minds working on curing MS. Keeps the hope alive. Keep up the good work!

  • There’s a bank (think red). That currently gives £50 to one of thousands of charities, of your choice, from a list when you open an account. The Bart’s Charity is one of them. May be if we opened an account this could go to Bart’s MS Research?

    • Thanks for thinking about supporting our research. There used to be an easy way of supporting our research with small donations: https://www.qmul.ac.uk/alumni/supportingqm/projects/

      However, don’t try this just now since you’ll end up donating to the QM Emergency COVID-19 Fund. Although this is certainly also a worthy cause, if you wish to support *BartsMS*, we won’t see the money. I’ve requested urgent clarification when the system will be mended such that people will be able to donate though this mechanism again.

      • Thanks I hope they fix it soon. Queen Mary University of London Foundation, is also on the choice of charities list.

  • This blog is an incredible resource and does a great job of helping pwMS understand not just what the established dogma is, but also the questions. It helps to teach us to be critical and evaluate what we read in publications properly. The value of this blog is evident every single day. It gives us a sense of control, and helps to demystify this disease that we have to live with. When weighed against the supposed damage done (some hurt feelings among the research community?) it just beggars belief that anyone would consider that it needs to be shuttered or corporatised. These discussions need to be had, and we shouldn’t be excluded from them. Apologise and make good if you get it wrong, and move onwards.

    This is clearly just a blog (and a rather rough around the edges one at that). It does what it says on the tin and it is very obviously not an official University publication. To make it so would destroy it, and to what end?

  • Moderating the content of the blog would take away the whole point of it. This is the only place I feel like I can get the unvarnished truth (not that I agree with everything that is posted here). My doctors won’t or can’t tell me what they really think about any new research–not that they would even probably know about it. Journal articles (as I understand now thanks to the blog) are mostly full of crap. I could do MS without the blog, but I would prefer not to have to. I always felt so lucky (haha) to have a site like this devoted to my chronic disease. Don’t take it away! And PLEASE don’t install a board of editors.

  • Success and Acclaim breed a tiny minority of contemptuous, envious souls.

    These meager beings are attempting to Cancel You. As you can see, We Stand United in our Opposition to their nefarious behavior.

    Please hear that we stand with you. We support your efforts. You have GREATLY Improved our Lives. You provide us with Hope, with information Vital to our very Well Being. You are the Harbor in the Storm of MS.

    Threats and vitriol hurled at you to threaten your position may seem to carry the force of a Tsunami- Know that We who Stand With You are ever so much stronger than any single sniveling sourpuss.

    Allow us a venue to sign our names to support the content and analysis you consistently, selflessly provide, our names will fill pages- standing in strong opposition to those few bitter detractors.

    Please allow us to help you Overcome these vile attacks.

  • Please, please don’t stop the blog. This will be a huge loss for pwMS, researchers and HCPs. As a pwMS, I rely so much on this blog and it has helped me tremendously make informed decisions about my DMT, lifestyle choices and discussions with HCPs. I am doing very well so far and I firmly believe that this blog has played a pivotal role.

    You can’t write online and be likeable to everyone. You will always find people who will complain against you. But this mustn’t stop you. And if someone wrote something so wrong, they can apologize and you can move on.

    It will be unfair to you and your readers to censor this invaluable blog.

  • Anything I could say has already been said, but I’d still like to register my support for the blog as someone with MS. This is my only source of intelligent leading edge information so please keep it going and do not constrain it so that it becomes simply another web site on MS with the standard information.

  • +1 to everything that has been said – this blog is my no.1 source of MS information – there are no other resources that come close to being so useful. If you need to rebrand or add a big disclaimer that’s fine but please, please don’t stop writing. I am so, so grateful for what you do. After being told to go away & hope for the best at diagnosis, I only re-engaged with a more enlightened neurologist & got on a high-efficacy DMT (albeit with a delay of several years) because I discovered this blog.

  • Hi Prof G, I would just like to add that I agree with all the comments from the blog that it would be very sad to see the blog close. It has been so beneficial to me over the pandemic lock-down and just to read (not always comment) all the information, that would not be available to me otherwise. Knowledge and educating myself with the disease, its ups regarding trials, potential new thoughts of how the disease is affecting most pw the disease in its glory. The conversations you all have clinically can be over and above my remit – but I’m learning lots and can now understand a lot of what you all discuss 🙂 I was diagnosed in 2016 – and I really enjoy reading the posts and feel if you were to change the format – it could start to become too popular, which may make the posts become mainstream and lose their uniqueness for the likes of little ol’ me to be able to gain access and read. Just being able to sometimes answer some of the questions about MS, that would take what is now even more so, a lengthy and stressful wait to see a Neurologist. It took over 1 year for me to actually see a Neuro – after navigating my way to speak to a secretary, who decided to help find the referral (which was sitting on a desk in an office) – to act upon, I could have been waiting well over the year. Its scary, not acceptable when you’re suffering and has left its mark too! Please try as you may – not to close the access.

    All the best and thank you and your team too for all the information and support.

  • 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!!

  • 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

      • 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)

      • 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.

  • 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:-)

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