Sunday, 25 October 2015

How Do you Like Your News

A neuro commented that the blog may have a "light touch"  (from the MDs) for a very serious condition.

The question is how you want to get your news?  

The old school, straight lace "Here is the News " (get this everywhere) or a more unconventional style.

We are what we are and we have to do it in a way that allows the person contributing to maintain enthusiasm.  

We can bin the abuse or sometimes post and respond as we are not wet blankets and censor freaks. 

Some people like the light touch some don't so we will never please everyone.

Some stuff you may never understand unless you are told what it means

23 comments:

  1. You are doping a great job.
    Please don't listen to all those grumpy people.
    I have leart such a lot from this blog and I'm very greatfull for its existence.
    I appreciate the time the team puts in every day of the week!
    A big thank you.

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  2. The third option being .. drum-roll .. I like you just the way you are :) cheesy huh

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  3. I like the way he's blog ... If it were any other way do not think I would visit every day since I found out ...

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  4. I would say the Neuro stating that is more in a thought pattern of clinical view. No easy solutions exist to this question. It is based in marketing even though it may not even be construed thereof.

    Global news grapples this daily. How much is too much and how little is too little information and unfortunately in many a case presentation is more important to the information consumer than the information itself. This is what happens when "Pretty" is more important than "person".

    In as far as BARTS MS Blog goes. A good deal of what is presented in content is beyond my knowledge base and I attended nursing school, now microbiology etc. But this does not mean that it is of no value to me as it helps me learn and grow. I am encouraged to learn to understand.

    For some, they will say, "Welp... this is greek to me".

    I think a lighter touch is a good thing personally. A lighter dialog is less exclusive towards those of us choosing to read what is complex. If content were on a completely clinical directed basis then it becomes more frustrating and frankly, that exists already. Reading clinical release information(s) are available in all their glorious complexity via other sites. These the information(s) that this blog looks at, processes and places back out to a public in a far more conducive format.

    I personally applaud Barts MS for even doing this. I am not aware of any other institution that does. I am not aware of any other research blog / entity that works so hard to extend itself out to its target public both in dissemination of research / clinical data but additionally is brave enough to point out deficiencies in systems towards patient outcomes.

    At our web we have tried very hard to maintain a balance. We do not want content to be overwhelming to the readers nor do we want it to be what we see at many MS webs where important information appears far more transient than it in real life is.

    Just look at this page. On the side sits a "Understand your risk of PML with Tysabri" app link. Want show me ANY other research blog that extends itself to the patient or for that matter even MS webs that has this? I've not saw it any place else.

    As I said to Mr. Giovanoni in another post. The compassion for people is ever so evident here as is the science and passion. Seldom, very seldom in fact is this witnessed anyplace more or less a disease.

    Yes, its a serious disease. I have the disease. Quite frankly I find it both noble with a twist of chivalry and remarkably caring set of people operating this web and at BARTS that as a research organization extends itself to more than the care systems. But to me, an individual and millions like me.

    You folks are awesome and dont let anyone ever try convince you otherwise.

    ~Cynthia~

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  5. dear me, if this blog is a "light touch" then what are all the other ms information sources out there - non existent touches? maybe i misunderstand the meaning of light touch?

    anyway, hope this helps lift your spirits lol:

    Bojana Balen http://multiple-sclerosis-research.blogspot.com/.../newss...
    Like · Reply · 23 October at 16:55

    Bojana Balen that blog is sorta unique as it's run by clinical practitioners as well as researchers... don't always agree with them but they do an excellent job of presenting their views and information. sometimes they even make fun of themselves wink emoticon can't thank mstranslate enough for what it does as well
    Like · Reply · 23 October at 16:57

    MStranslate Yeah they do a great job - I have met Gavin Giovannoni before and am hoping to catch up with him in 2016 to discuss their work and how we could potentially collaborate - Brett
    Unlike · Reply · 1 · 11 hrs

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  6. Deliver the news as you see fit. It's a great site.

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  7. Follow the advice of Ricky Nelson in 1985 with his song Garden Party.

    "You see, ya can't please everyone, so ya got to please yourself"

    Do the job as you see fit.

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  8. Yes, keep it as is, please!

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  9. Like touch was i believe meant as too much humour by MD.
    However if you cant have a smile and laugh the news is often bleak or same old same.
    Some of the posts are graphics are there for entertainment my entertainment and are cryptic but if you know an amphiouxus is an animal without a spine then the image makes sense.

    Have you seen the coat of arms of the ABN its on the blog.

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    1. i have to say, maybe i'm just a hermit or maybe it's a cultural thing but often i have no idea what you're talking about lol... like right now ;)

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    2. We are in the same boat sometimes, too. ;-)

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  10. As a "Neuro" commented then the blogosphere must respond with a virtual "what's it to you pal?" The blog as it stands is a very good combination of serious science plus accessible explanation. Clinicspeak and other sorting tags give the reader an idea of audience. So my two pennorth is if you want your news dry like sandpaper then stick to your academic journal and leave the Barts bloggers to lighten things up

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  11. Like touch was i believe meant as too much humour by MD.
    However if you cant have a smile and laugh the news is often bleak or same old same.
    Some of the posts are graphics are there for entertainment my entertainment and are cryptic but if you know an amphiouxus is an animal without a spine then the image makes sense.

    Have you seen the coat of arms of the ABN its on the blog.

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  12. Don't change a thing guys - you and your blog are unique amongst MS resources online.

    I've found that a lot of other resources are somewhat "fluffy" - and apart from acknowledging that MS is currently incurable, they present a lot of things with sugar coatings. Apart from the UK's MS Trust it seems that a lot of the ordinary MS organisations are pretty shallow when it comes to solid current information. But, each to their own - I want a bit more depth in what I read, even if the biochemistry etc is beyond my comprehension. That's what I like so much about Barts's blog - the simplified explanations provided by the Barts crew.

    Agree with Bojana about MSTranslate - it's a good resource, quite different to Barts, but a bit more palatable and digestible for the "ordinary" PwMS. Very short postings on the Facebook page, but a bit more depth on the website. I think it's a good starting point for people to be able to find avenues for further exploration if they want more knowledge. (It's worst aspect is the constant postings from an individual who seems to believe that diet and CCSVI are the only true paths for PwMS to follow)

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  13. When your neurologist friend has a blog with 2 million views, you let us know and we'll all head over there for a more doctorly view of our condition.

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  14. Light touch? Compared to what, the NMSS blog which is non-stop fun runs and "take your vitD and pills and you'll be fine!"

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  15. I like to view the news, especially MS news, through rose-colored glasses. Please refrain from posting negative trials and research data. :-)

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  16. I wouldn't say the blog as a 'light touch', but a personal touch. I like reading both raw data, as well as PR, and BartsMS, they all offer value and information in their own way I think. I like the style of writing, I'd say, keep it up :) .

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  17. First time commenter, long time reader. As an MS patient diagnosed 16 years and a former nurse, ( are we ever a former anything though as it becomes a huge part of who we are and how we view our worlds?) in my opinion, there isn't anything I think you should change. Keep doing what you're doing and please know how much what you do is appreciated.

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    1. Welcome to the comments, Desinie. We'll keep on with what we do, and ignore the stuffed shirts.

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  18. Interpret good, bad and other research news without rose-tinted glasses nor a light-touch. Readers can go elsewhere if that is what they want. The web has changed the way we access information and that is for the better.

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