Tuesday, 24 May 2016

We're redefining our Mojo

Anyone for a Mojito cocktail? That was one recommendation. #MSBlog #MSResearch #Mojo



We’re back! Following one week of painful – albeit self-inflicted – soul searching we’ve now discussed the positioning of the blog. Thank you for all the feedback (positive and not-so positive) whilst the blog was suspended. We reviewed ALL of your comments, and felt very much encouraged to resume blogging. There are things we can improve, and below are some of our action points moving forward:

  • Posting Schedule: We drafted a posting schedule that will hopefully free up some time for the contributors. This is obviously not set in stone and won't stop us responding to current events, TV programmes, News articles in relation to MS as they come out.
  • New faces and guest posts: We will continue to invite researchers and clinicians to write guest posts, however will also offer the opportunity to people with MS, their family members, friends, and people involved in charity work. Please get in touch if you would like to contribute, however note this is a platform for MS research not for advertising.
  • Barts MS Charity: We will set up the ‘BartsMS Charity’ to support our research, maintaining the blog, and off-label prescribing initiatives, particularly in resource-poor health care environments. More information about this coming soon.
  • Better social media coverage: 
  • New ideas
    • Legibility: The blog home page will now show 5 posts at a time. What do you think? 
    • We plan to update the “Trials and Studies” section of the blog. 
    • We’re planning to extract all the clinical advice and information from previous and future posts to create an information resource that is easily searchable. 
    • Prof G promised to be more diligent with producing the case studies and hopes to get some back-room help. 
    • What about podcasting and vlogging? Do you think we need to go multimedia? 
As always, we are interested to hear your thoughts on the above and beyond. It seems as if a lot of you don't like the use of anonymous comments. It would be nice to know if many of you are repeat commentators; who knows you may take on Dr Dre at his/her own game! Can we suggest you take on a pseudonym if you don't want to let the world know who you are?

Photo credit: Dolly Clew

64 comments:

  1. Fantastic. Glad to see you're back. I'm typing this while I'm hooked up to my second round of Lemtrada. No new lesions, no loss of brain volume. No disability. I would not be where I am now if it wasn't for this blog. Thank you.

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  2. So glad and relieved that you're back and staying back! Lots of good, interesting ideas proposed. For my part, no more Anon posts, I'll only post as me.

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  3. Couldn't agree more! I'm writing this while on my first infusion of espresso for the day, having breakfasted on fingolimod. Well done you guys, you can't keep a good mojo down.......

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  4. I am very happy that you won't stop the blog! YAY \o/

    As I was already happy with the old format here are some tips if you want to go to vlogging:

    Good audio equipment!!! You can get good dynamic microphones for around EUR 30-60 and low range condenser microphones as low as EUR 70.

    BUT: use a compressor (https://en.wikipedia.org/wiki/Dynamic_range_compression)A lot of people miss this. Especially if you record only speech it will increase your audibilty by a lot.

    Most Audio software out there have a compressor availible. You just have to turn it on and play with it a little bit.

    I am really happy that you are back! <3

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  5. So happy you have decided to do this and come back blazing full of good ideas.

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  6. Thank you so much - it is so brilliant that the Blogspot is going to continue.

    It made me cry when I thought the Blogspot was going and now it makes me want to cry again, knowing that it is going to continue. Is this MS emotional lability? I don't think so - I've never had this reaction to anything else in my life. It is just that this is an unbelievably good resource. You are changing the lives of people with MS with the information that you post here.

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  7. W00t!!

    Very happy to read this. VERY. *does little MS dance*

    A searchable clinical advice function is a fab idea & will be very useful for newbies.

    Setting up the Barts MS Charity (<--stroke of genius!) will be a substantial amount of work in itself, but please don't overburden yourselves - podcasting & Vlogging has its place, but I don't think it would provide any 'added value' for the blog followers .

    Reflection is great practice, but please don't scare us so much with your next bout of navel gazing!

    Keep up the good work.

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  8. Bredrin’, it seems the last few weeks of existential soul searching and pleas for obsequies worked a wonder: business resumes as was. The toxic and useless DMT campaign that favours Big Pharma shareholders over patients has won the day. Vox populi, vox Dei: the MSers want what you’re giving and demand loads more of it, even though there is no evidential proof they can cure a syndrome of which there is no known cause.

    Look, I’m on your side here, bruvs. Who cares that your site looks archaic as sin and out dated as Napster. Who gives a fig none of those in Team G has anything new to say, peddling the same old jack we’ve heard timelessly.

    That photograph says it all, mate. It looks like an uncool geek convention for nerds who ain’t dench and got beat up at school for liking sci-fi stuff. It’s 2016 fellas. Contemporise!

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    Replies
    1. Dre does it again.

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    2. I sort of agree with Dre. The blog does need a revamp. Make it more multimedia and interactive.

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    3. Dear Dre
      In our continuing efforts to revamp the blog, perhaps you might aid the cause and consider contributing a guest post? We may of course have to translate some of your hipsterese for a lay audience though.

      Delete
    4. I would love a Dre column. But I would like it to be more on the social politics of MS rather than his anti DMT tirade.

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    5. More Dre is okay by me.

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    6. Asking full-time researches to re-invent themselves as Web & Graphic Designers is a bit much. Those are entirely different career paths. I thought the plan was to lighten the burden?

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    7. Surprisingly, Dre, most of us don't care that the site looks "archaic" as you put it. It looks perfectly fine and it's the research news we care about, not the latest summer redesign update.

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    8. Maybe Dr Dre would be so good as to go and set up his own blog where we can consider his views in detail and apply the scientific method to them. And no this blog does not need multimedia and interactive it needs concentrated data and opinion.

      Delete
    9. I don't know what some of you are reading when it comes to Dre's posts..."useless Dmts, no proof that they can cure MS without a cause, team G has nothing new to say, just peddling the same old jack." It is not a ringing endorsement for the state of MS research and team G. Unless of course you are Pharma bloggers raking in the cash. I think he is right, the dmt story has run it's course, it is 2016 time to re-evaluate the state of MS. Induction therapies and repair need to move to the center stage.

      Delete
    10. Welcome back Dr Dre. Have you ever considered what harm you can do if you are wrong about your own theories and hypotheses about MS, but someone takes them seriously? What you need to do is propose and experiment that either proves or disproves your hypothesis; this is the way science works. We would prefer it if the discourse on the blog was scientific.

      Re: "useless DMT..."; can you please propose an experiment that proves that DMTs are useless?

      Re: "cure a syndrome of which there is no known cause...."; I have stated many times that EBV is the probable cause of MS. Can you please propose and experiment that demonstrates that there is no cause underlying MS? In other words what is your premise that MS is a syndrome and not a disease?

      If you respond can you please stick to the science. Thank you.

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    11. Prof G I am not sure you should enter to any discourse with Dr Dre. In fact, he is simply and eloquent troll and I am surprised you give him air time on this site. I think this blog would be better off without Dr Dre's smugness.

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    12. I agree completely, there are peoples lives at stake and/or aspects thereof.

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    13. I think it's worse than that Anon 10:44. I think the blog encourages trolls by consistently responding to negative comments, at a much higher frequency than they respond to any others.

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    14. Please don't waste time responding to comments from Dr. Dre and other readers like him. It only gives these guys more fodder and diverts from the purpose of the blog. I think ignoring them is the best way to keep them away.

      Thank you very much for reinstating the blog. It is one of my DMTs!

      Delete
    15. Blog is back! How wonderful!!!! o//

      PS: I wonder what Dr. Dre is about research and clinical field to MS, and what the "theories" of it for this "mysterious disease"...
      I can only say that I had Mononucleosis and then I had my first outbreak, and according to all patients using highly effective DMTs more vitamin D3 are much more stable than those who use nothing.
      Think about it, "Dr. Dre" ...

      Delete
    16. Yo, Don Giovannoni, you raise some interesting points, but I’m in no position to pull out my Argos’ chemistry set from 1994 and put the paraffin fuelled Bunsen burner to work in order to dispel your grievances.

      Oh, mate, your EBV theory has been laughed out of medical court. The Charcot thing was a failure, and an expensive one at that. It was a scientific liability. Hey, at least you tried.

      In order to rationally distil my position on neo-DMTs’ non-efficacy, I beseech you to just look at the MSers in your care that underwent alamtuzamab treatment yet still succumbed to progressive MS. I know that you know you’ve had that happen, brother. That’s all the scientific proof one needs, though, you’ll no doubt retort by saying such cases are outnumbered by successful examples, even with the myriad of attached secondary diseases that come with these DMTs.

      MS has a cause, Don Giovannoni, but you ain’t any closer to figuring it out. I will honestly make the case that current MSers live in an overly musicalised world, desperate to be on anything rather than nowt, even when it’s non conducive. We live in an entitled culture and that is wrong, mate. That is where Big Pharma laughs all the way to the bank. The system is a business, not a charity. Big Pharma wants MSers on its DMTs because the money is in the medicine, not in the cure. I’d argue MSers should eschew any drug made by businesses that prioritises profits to its shareholders over ill folks’ welfare. You cannot trust such a system, Don Giovannoni, can you?

      I sense that this bog is trying to undermine my perceived lack of a PhD, and making me look a fool because one is not in possession of a Barts’ approved diploma. Mate, we’re all scientists in the Lord’s eyes.

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    17. Just remember folks that the good Dr Dre does not have MS.

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    18. That was actually a pretty impactful response, Dre. At least you responded and didn't stay silent like usual.

      This is healthy debating, to me.

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    19. Re: "We're all scientists in the Lord's eyes."

      Hilarious. Dre is pure entertainment. Loving the banter.

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    20. Dre's comment has no academic viability and should be deleted, bruv!

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    21. I don't mean to laugh but Dre's way of putting words together and funny images cracks me up.

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    22. His therapeutic nihilism does the opposite for me but each to their own, I guess.
      BTW everyone try coming up with a name when you post(pseudonym is fine), it not only makes responding easier but makes it more likely to make it past moderation.

      Thank you for your co-operation everyone.

      Delete
    23. Dre is a class clown. You kind of need that around here or else it gets too boring.

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    24. Yep, that's how I view him too. I suspect his heart's in the right place.

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    25. I meant to say politically, certainly not concerning his opinions on DMTs.

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    26. Dr. Dre is really funny, "Blog silly."

      Not answered my question: what about the MSers that are DMTs and while Vitamin D3 ?! 03, 04, 05, 06 years without disease progression and outbreaks ?! Interferons And MSers of the alemtuzumab.
      Just come here in Brazil, ask for a license to the Ministry of Health, Ministry of Science and Technology and Anvisa to collect the data, or create a partnership with local Universities.
      The missing data aren't, you have already given the track that is a scientist, researcher...

      Another: is clear that those who made the transition to SPMS yet has no way to benefit fully from DMTs as alemtuzumab, as there is an inflammatory component there, but neurodegeneration is there much stronger, screaming due to successive injuries ongoing, continuous previous inflammatory condition untreated. You're looking at maybe 02 more Complex Systems of the Human Body: Nervous and Immune. I don't expect it to be easy to find the answer to everything that involves. See what's happening now in the field of Alzheimer's Disease: successive infections cause the body to produce beta amyloid, but for some reason the body can not get rid of that beta amyloid! Dre are clues. What are their for MS ?! Cleaning the Central Nervous System of plasma cells Dre.?! Cladribine is there, and you do. What do you have to say?!

      Charcot 1 may not have worked as Raltegravir would not be the most suitable antiviral to combat EBV, I even think that does not exist right antiviral to treat it, there vistya what he can do in the Non-Hodikgins Lymphoma.
      Damn I am neither the biological area and I've been through this Dre., One needs Neuroprotection! And "Dom Giovannoni", "MD's and other Barts is already beating granddaughter button for at least 01 years and a half that I follow this blog ...
      What are your chances for cause, development and treatment of MS?! Come on...

      Definitely you're a joke ...

      Delete
    27. Yeah Cinara! 'a joke' is exactly the right description for Dre

      Delete
  9. Replies
    1. Oh yes, i too am so glad you're back and sharing news, comments and insights. It really does help me to find a way through the mire, and it's clear that others, fellow msers and medics, also benefit from this stimulation.

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  10. Am very glad to see such a handsome bunch.

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  11. I consume podcasts an hour a day on my walks, mostly around my condition or general Paleo and well being, so for me it is a great media to add.

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  12. Part I

    Good afternoon :-)
    It is wonderful to know that you are back.
    I'll try to provide you with some useful feedback where I am able to do so...

    + Posting Schedule: We drafted a posting schedule that will hopefully free up some time for the contributors. This is obviously not set in stone and won't stop us responding to current events, TV programmes, News articles in relation to MS as they come out.
    // It sounds really feasible and efficient. You'll be able to take a breath and do your greatest and brightest science while keeping up to date.

    + New faces and guest posts: We will continue to invite researchers and clinicians to write guest posts, however will also offer the opportunity to people with MS, their family members, friends, and people involved in charity work. Please get in touch if you would like to contribute, however note this is a platform for MS research not for advertising.
    // This idea looks superb as you already know from your experience that the intelligent coordination of efforts of scientists and people can produce wonderful results which go beyond imagination.

    + Barts MS Charity: We will set up the ‘BartsMS Charity’ to support our research, maintaining the blog, and off-label prescribing initiatives, particularly in resource-poor health care environments. More information about this coming soon.
    // People are able to create unique things together...

    + Better social media coverage:
    - Do you know that we're on twitter as Barts MS Blog but also members of our team are on it individually: Prof G, Mouse Dr, Alison, M&M, Dr Ruth, DrK, Sharmilee, student Steph, Database Christo also collaborators Rachel Farrell, Dr Niall, Hugh Kearney, Katie Lidster...all worth a follow.
    // Following, watching and interacting with the great minds at work, sounds inspiring :-)

    - We put all of the MS Research Day talks and our MS Question Time videos and hangouts on our YouTube page.
    // Thank you for this better access.

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  13. Part II

    - Our project Digesting Science (teaching kids about MS) is also on twitter and facebook.
    // It significantly is the hard topic to start with especially in the case of children, so that the proper attitude is a must.

    - SlideShare sites (Prof G, DrK, BartsMS Blog).
    Our ClinicSpeak suite of web apps.
    // Your presentations are hyper-helpful as they organise such a huge amount of information in such a neat and transparent way. Personally, these presentations helped me to such an extent that it is even difficult to say. You definitely do remember the ones about optic nerve atrophy, JCV & PML, the EDSS measurement, not mentioning the one about the most appropriate time for switching DMTs. All that speaks for itself.

    + New ideas:
    - Legibility: The blog home page will now show 5 posts at a time. What do you think?
    // Well, it probably depends on the length of these posts because I can say as a frequent reader that you analyse and present subject matters in a detailed way, which is profoundly scientific. Perhaps, we'll see the results in practice...

    - We plan to update the “Trials and Studies” section of the blog.
    // This is just brilliant as it is the heart and soul of your thirst for innovation and staying on the cutting edge. I might be incorrect in what I say, but your being so innovative and groundbreaking stems from your "always being a step further in your research and ingenuity".

    - We’re planning to extract all the clinical advice and information from previous and future posts to create an information resource that is easily searchable.
    // ...and most probably accessible. Who of you doesn't own a mobile device? I need to say "Wow!" after I've read this idea I just imagine myself siting and feel like keeping a mobile device in my palms and swishing through a kind of a mobile app by BartsMS where I can save/ bookmark such pieces of clinical advice and sync them with the "information resource" that you've got in mind? You know you have already created the EDSS assessment tool and it is you right now speaking about the further steps towards the "information resource"...

    - Prof G promised to be more diligent with producing the case studies and hopes to get some back-room help.
    // Take your time Professor ;-)

    - What about podcasting and vlogging? Do you think we need to go multimedia?
    // Presumably, you need to assess your workload in order to avoid the situation that pushes you away from your research. However, if you feel and know that it wouldn't consume your precious time and energy and add some valuable ways of expression, then you are on the right track...

    Thank You for being back...

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  14. Wonderful that you are back! Thank you!

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  15. You're back! Yay!! And your latest post about the new imaging technique confirms the positive value of what you do.

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  16. YIPEE! I cannot tell you how happy I am to see your blog back! I literally jumped for joy :-) As I said before, MANKIND benefits from all of your hard work and efforts. Thank you so much for returning!!!

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  17. Great to see you will continue.. the ino you have is often used as a great educational tool for our MS community ty all

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  18. I'm having my own Mojito cocktail to celebrate.

    The new ways of working / changes all sound good. I particularly like the plan to create a searchable resource for the clinical advice and information.

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  19. This blog is like a second DMT for me. Glad to hear that I'll soon be able to take my medication again! THANK YOU!!

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  20. Hurrah! Thank you for resuming this. I have found it so valuable for my decision making and it's helped me cascade information to others. I like your ideas for change. I'm not overly worried about social media and I don't think the blog looks outdated. I'd enjoy a podcast though!

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  21. Fantastic! So pleased for all the reasons other people have expressed... I love th ephoto, too :-)

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  22. What a relief! Thank you for returning!!!

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  23. Very good news indeed! I am a regular visitor and like the format of the blog, but if refreshment is needed I'll take that too if the core information remains

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  24. I am just so glad and relieved that you guys are back. Shake-up is good, rethinking the posting schedule etc. excellent. But the overall concept, of infomation dissemination and communication, of treating pwMS et al as real people, as partners, thank you.

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  25. I missed you. Like everyone before me said.... "I'm glad.."

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  26. New, fresh beginnings - very positive. "Can we suggest you take on a pseudonym..." I pledge to always bother to sign in with my call sign in future, or not post at all.

    One problem - where are the gardening bits? Gardening therapy is the best thing for my PPMS. And loads of my Himalayan blue poppies have germinated, so I am on cloud 9.

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    Replies
    1. Mine have germinated too, though past experience tells me this is just the first step on a tortuous road to potential nirvana (much like research into MS I guess).
      One hepatica seedling has just appeared and I'm having to restratify my Welsh poppy seeds by sticking 'em in the fridge.
      Will keep you updated.

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    2. Congratulations on the hepatica! Yes, I hope my tiny blue poppies are not visited by the damp off demon - giving them plenty of ventilation and good vibes! Good luck with the Welsh ones!

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  27. So great to see all your faces - you are welcomed back with open arms! Thought something really bad had happened.... glad to see a new focus and perspective - you can only do so much so yes please prioritise.

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  28. Good to have you back. You have been missed.

    Jusy one thing. Ban Anonymous, make people use a pseudonym if they do not want to use their own name. A wall of anomymous comments is soooo boring

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    Replies
    1. I agree with you Patrick re using Anonymous and it looks like many more commenters are taking the advice and using a name/pseudonym. As I said upthread, it makes answering queries that much easier and makes it much more likely it gets past moderation.

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