Tuesday, 28 July 2015

Evolution of the blog

Is it time to change the blog? To let it evolve? #MSBlog #MSResearch

"First the internet, and then the web, has transformed society and how we interact with each other. I would argue that the greatest benefit to mankind has been its effect on the democratisation of knowledge and the easy access to knowledge via efficient search engines. Gone are the paternalistic days when neurologists knew it all and the patient (yes, the patient rather than the MSer, or person with MS) knew very little."

"One thing I have learnt from this blog is that there are no real boundaries between people with MS, their families, healthcare professionals, researchers, politicians and other people with an interest in MS, when it comes to access to knowledge. I frequently learn things I don't know from comments made by you the reader. Therefore, we are proposing changing our byline to the following:


A blog for people interested in multiple sclerosis
"Interpreting good, bad and other MS news"

Why the proposed change? We run a MS Preceptorship, or teaching course, for trainee healthcare professionals (HCPs) with an interest in MS. As part of this course we want to extend the teaching online. We could do this via a separate website requiring online registration, but feel this would be wrong. You have already expressed a desire to be able to learn about MS in existing teaching portals that are restricted to HCPs only. We want to challenge the status quo. We also feel that you would benefit greatly from reading the case studies and learning about the thought processes and complexities behind clinical decision making and management. Hopefully, the case studies will generate lively debates, to illustrate that medicine remains an art and is not a science."
"In short this site is evolving into a multi-dimensional site for HCPs as well. In reality, this has happened already. I rarely attend a meeting without hearing from HCPs how useful they find some aspects of the blog and how they use it as a resource for information. In fact we are proud of this. We also don't want to force change that you don't want. Therefore we are asking you to vote on the proposed change."

36 comments:

  1. ProfG is correct about HCP viewing the site...maybe to get knowledge or to check what we are up to:-)
    .
    When ECTRIMS is on, the country where the meeting is being held tends to become number 3 country viewing the blog after the the USA and the UK.

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  2. I always hated having a HCP site... it seems to imply that us MSers are too stupid to understand what our benevolent overlord's are talking about. It's especially insulting because most of the HCP's sites I've visited are way less complex than the research you guys post about, so I appreciate how open you all are.

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    1. Totally agree. That said, I love when an MS expert presents a case study, complete with MRIs, and challenges viewers to pick appropriate next steps/treatment. It really helps me understand my neuro's perspective.

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  3. Honestly, the one thing I would change about your blog more than anything else is that these awful blogspot comments do not work in Safari. This dramatically reduces how much I comment because I need to load up Chrome, navigate to the same page, post my comment, and then close it all down. Can't someone fix this?

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    1. Are using a Mac? If so Safari can be notoriously difficult on loading blogger but it works fine with my macbookpro. Also on iPhone 5s. However I prefer chrome as I mainly use my google nexus tablet. I think blogger has difficulties with iPads. Otherwise you could look at your settings and doing a few hard refreshes. And checking to see if this is an ISP problem.

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  4. Why does the byline need to change? HPC are welkom to read the blog. But this blog is for people with MS.

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  5. HCP's should start to listen as well as read!

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  6. A blog for people AFFECTED BY multiple sclerosis: interpreting good, bad and other MS RESEARCH news".

    this different title proposed by me is very important otherwise newly diagnosed MSers will dismiss it as another self-help blog run by............ whoever.

    when I first vistited the byline 'research' was exactly what convinced me - it's more than just a blog of opinions - yours is run by scientists.

    also, don't play to every guy in the gallery in a quest of popularity - this blog is foremost for people who need it most i.e. MSers!!!!

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  7. The best bit about this blog are the clinic speak pieces and the expert comments on research papers / trial results. The worse bits are the political posts / grumbling about the future of the NHS. As MSers were are only interested in research as it may lead to treatments which improve our lives. I do like Prof G's graphics. I also like the comments that poke fun at the research establishments - too many international conferences, need to clean out the mice cages, EAE papers which are as useful as a broken wristwatch. It's also a great opportunity to compare the research view of progress (we really making progress) with the patient experience (no treatment for progressive MS). Thanks for all your efforts.

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    1. Are you serious? The political/ NHS posts are the best thing on this blog. I love Dre's confrontational rumblings. I want more of that, please.

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    2. Exactly. I'm amazed that people don't realise the importance of politics as it impacts on the NHS and influences the treatment of MS today and in the future. If you're not interested, you should be.

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    3. As an American, reading posts about the realities of the NHS helps me in debates about our own changing health system.

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    4. MD2, fellow Zizek reader;). I agree that it is absolutely vital that all the interrelationships between politics and the NHS are understood, but everyone is different in how they perceive life and 'what matters'.

      Illness sometimes makes people draw in their focus, I don't mean this pejoratively, when you are ill with something like MS, it can be hard sometimes to look at the bigger picture, as much of your energy is needed for your health, so it is understandable that some people will want to focus just on treatments as this may offer hope. And not much of that around with politics and the NHS these days.

      However, I do disagree where this individual says 'MSers are only interested in research that might lead to treatments ...' Yes, I very much doubt anyone with MS would not be interested in this, but it's not an 'only' thing that interests me. I have more than a passing interest in the overall problems the NHS faces (and has done for most of my life) and the overarching role of politics/government. So everyone please look at how 'politics' is impacting on the NHS, and if you can get involved in campaigning (Keep our NHS Public is just one of many campaigns) before it is too late.

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    5. I am serious about the political posts. Its the same old leftish comments trying to get people worried about the future of the NHS. The key problem is demand - the population of the UK grew by 250,000 last year mainly due to immigration + we have an ageing population. Consultants in the NHS earn large salaries 5-10 times the average UK salary. Many earn a lot more with private work. Researchers and consultants often get. Paid bt the pharma companies to do work on drug trials - and then moan about the cost of the drugs. I think the focus should be on research and the need for better treatments - we all agree on that. Politics posts don't add anything, just an opportunity for certain Team G members to play the PC / Labour luvvie role. If you feel so strongly, contribute some more tax or take a pay cut.

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    6. Dear Mr Farage
      Can't be bothered to respond to your nonsense :-)

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    7. OK I take it all back, sometimes it's not illness that narrows someone's focus, sometimes it's just plain old ignorance and bigotry.

      The Daily Mail is that way, luv ...>

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    8. "Politics posts don't add anything, just an opportunity for certain Team G members to play the PC / Labour luvvie role. If you feel so strongly, contribute some more tax or take a pay cut."
      Politics impacts on every aspect of daily life, including MS. Seeking to shut down debate (with scattergun whataboutery) usually indicates that the (usually rightist) proponent is uncomfortable about the pertaining situation.
      If it's PC/Labour luvvie to have the best interests of pwMS front and centre in our list of priorities, then guilty as charged. Other bogs are available if you don't like it.

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    9. As MD2 is penickety and seldom spells wrong watch where you head is going for a powerflush..:-) or doez MD2 mean blog:-)

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    10. Ha ha. I made a good Freudian slip there ;-)

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    11. Dear Mr Farage if we got rid of our hard working immegrants there would be no teamG or profG. There have only been three Engrish in the lab and they are imports from outside London. We have teamg members from Australia New Zealand, China Ceylon India Iran Lebanon Oman South Africa Zimbabwe Ethiopia Nigeria Argentina Colombia russia china belarus portugal spain greece italy germany belgium netherlands sweden switzerland wales ireland and scotland and the others i have forgotten about.
      MS reasearch is a united nations and our culture benefits from our diversity

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    12. I'm the veritable epitome of a left-wing luvvie. Live in Islington, I'm a writer, ra national left-green publication and was guardian as litem for two unaccompanied child refugees for a number of years. First and post grad degrees from Russell Group universities. And I'm not English (whatever that means) but proudly Scottish, Italian and Persian. I could go on but I might give you a heart attack.

      PS: I'm not even a labour supporter as such but a disappointed and resigned Marxist. Anyway enough of this before it turns into an SWP -type forum (shudder). And my spelling is now worryingly crap :(

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    13. Used to live in Islington (a fine place which defies the lazy stereotypes thrown at it by the rightists) myself, you sound like my kinda person. ;-)

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    14. Thank you MD2 without turning this in to a "mutual appreciation fest", anyone whose struggled with Zizek is my kinda person too ;)

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    15. Thank you too though if we're not careful there will be comments to "get a room"!
      BTW I usually have to have a lie down after reading Zizek ;-)

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    16. Haha, I'm blushing;). Perhaps we will get to meet one day, I recently met with MD1 at Barts to discuss a project, I'd like to help with, while I still have a few brain cells left.

      Zizek is a good cure for insomnia, I should have read the Sublime Object of Ideology last night, then I would not have been awake at 3am.

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    17. Well if you're meeting MD1 again tell him to give me a shout, it'd be good to meet you. Also Islington's only up the road from us.
      I usually use Joseph Conrad's Nostromo to put me to sleep, it's so dense a couple of pages and I'm gone. Never managed to get more than a third of the way through it and I'm a glutton for punishment.

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  8. Whilst I strongly feel that the writing of the blog should primarily be targeted towards people with MS, retaining the current level of scientific/medical/intellectual content, I certainly have no problem with attempts to broaden the readership with a more inclusive byline, for example. As a person with PPMS, the ignorance of others (including some GPs) as to the effects of MS can be a major boulder in my way.

    Perhaps a minor caveat. In terms of wider readership, I don't really think the occasional, slightly sensationalist diagrams - such as that of a brain running through an hourglass - are all that helpful in that I don't really want to explain to someone that my brain is not liquifying and threatening to start running out of my nose and ears.

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    1. "I don't really want to explain to someone that my brain is not liquifying and threatening to start running out of my nose and ears."

      Oh, thank you Sterntaucher for a very funny and vivid image. Personally I don't particularly like the shrivelled walnut images (it has put me off walnuts for life) but as you say these are quite minor issues (and possibly helpful for the decision makers in the NHS and politics who may read this blog, as a picture can often illustrate much more immediately than words).

      I too have no problem with changing the strapline, if this helps generate more interest in doing something to help people with MS, then bring it on.

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  9. The number of people who have responded to the questionnaire with MS far exceeds the total of all the other descriptions of readers.

    So change the strap line but do not alter the contents. Some articles are a bit dry and boring but overall you provide a fair and honest opinion of the state of play within the MS world. Please don't change it

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  10. "A blog for people interested in multiple sclerosis
    "Interpreting good, bad and other MS news"

    Being a pinnikity writer, I have to tell you this is a strapline not a byline!

    Essentially it's got to mean something to 1)the readers and 2)reflect in a a succint way what this blog is about.

    So for me, it's got to include the word "research" and appeal to the core readership, while allowing for audience expansion/inclusiveness. The above doesn't do this at all, it just waters down the strapline and makes it a bit insipid.

    Back to the drawing board:).

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  11. "Being a pinnikity writer, I have to tell you this is a strapline not a byline!"
    Being a pedant, I have to say we call it pernickety round these parts ;-)

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    1. For shame, I spelt it incorrectly. My excuse is having MS and it sure is affecting my spelling these days, especially 3 in the morning; but perhaps it's because I occasionally write for The Grauniad. A world-renowned newspaper for its good grammar and spelling;).

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    2. Sorry, was just being mischievous. Having just posted Bog for Blog I'm in no position to criticise. I think I may have read some of your work at the esteemed Grauniad.

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    3. That's ok, mischievous comments are fine, I've heard worse over the years; I'm more concerned about my rubbish spelling :(

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    4. Rubbish spellin some times youve just got to live with it.... I do:-)

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