Saturday, 19 May 2018

2018 List of Best MS Blogs

We have made the Healthline 2018 list of "Best MS Blogs". We have changed the blog in the last 6 months; fewer posts, more guests and less science. Do you think this has improved the blog? We would welcome suggestions going forward. For example, we are thinking of migrating the blog from Blogger onto a better and more responsive platform. 




ProfG    


16 comments:

  1. Congraluations. As for changing the format. Given a lot of researchers read this blog. Do You really want to dumb it down? End of the day the aim of the blog should be to stir debate amongst researchers about the pathogen of MS. Subsequently leading to a cure. I prefer more science content. Why not have a vote before trying to become more popular at the expense of content?

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    1. No. I disagree. The best responses to this blog have always been the human interest posts. The BBC Radio 4 drama on assisted dying, and Edith's video on BBC News, all received big attention because casual MSers connected to them.

      The science posts are too impersonal and speculative in comparison. Researchers are not affected by the disease the way we PwMS are. Also, Blogger is too Noughties now; you need to upgrade to newer formats.

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    2. Hi. Human interest posts. As MS Patient please understand and forgive me for what I'm about to say. SO WHAT?? This is unimaginably scary disease threatening to take your very soul. There are 2.5 million at least. Probably more like 7 million and growing. Disease is not nice.

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  2. I think the improvements have worked to streamline content and be more focused. Blogger is tried and tested but it is quite clunky and does not lend its self to design clarity. Need to be clear benefits of change as the fantastic archive that blogger offers for a long running blog tend to out weigh gains. Congrats on the award . You are always my go to for Information (capital I)

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  3. The advantage of this blog over the rest is valid science, so more science (please!) -not on smoking and old DMTs.
    Could see a possible format update for practical reasons.

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  4. "Interpreting good, bad and other research news". How does this fit in with less science?
    Then what is the point? There needs to be more content on "where do we go from here". Are we content with the state of MS treatments from the past 25 years? If so then it is mission accomplished.

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  5. This is the best neuroinflammatory website for MS in the world by far.

    I am not really sure why there is congratulations for a best website for MS? There is so much of the puzzle of MS that is severely lacking and many people are worsening because of it.

    There has been no cause established. There is no remyelination therapies, no neurodegeneration prevention and no neurorestoration products. There is no meaningful treatment for any progressive form of MS. This website, sadly despite your fantastic efforts which I very much appreciate, severely lacks as does the rest of the MS research world.

    I have stopped reading almost all basic research and phase I trials as they are almost always fruitless. Hope is fading fast with this disease after 20+ years of the same failing approach to this miserable disease.

    The current state of research into mainly the downstream neuroinflammatory aspect only of MS has failed the majority of MS patients. I guess there "may" be some hope if you have been recently diagnosed with MS or are early in your disease course, although this has not been fully established either.

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  6. "We have made thbeste Healthline 2018 list of "Best MS Blogs".

    Well if this is Best MS Blogs..can only imagine how bad the others must be. It's O.k. though as you guys are still learning.

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    1. Damned with faint praise or praised with faint damns?
      Thanks anyway ;-)

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  7. I'd hope this Blog is able to continue to straddle the two: science and living with MS.
    After all, the two aim for the same results: mitigation of disease impact/symptoms and knowledge of DMTs and self-care.

    Stating the obvious:-
    The ultimate aim is, of course, a cure, and also remyelination so sharing info between researchers is vital. But,in the meantime there's a whole heap of us having to respond to a diagnosis and subsequently live with this vile condition.

    It's through this site I've learned the most: everything from B and T cells to Advance Directives, so please allow for continued benefit to all those who access the site.

    Congratulations on the well deserved recognition.

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  8. I now just follow Prof G's Twitter feed which highlights key research papers etc. In reality, MS research is in the duldrums. Last big MS story was Ocrezilumab. We are at a stage where there are some excellent anti-inflammatory / anti-relapse treatments, but very little for advanced / progressive MS. The recent AAN conference threw up very little. The efforts to preserve arm function is laudable, but I want to retain my leg function (would MS researchers be happy to be slumped in wheelchairs?). I still have no idea what Team G are up to - always the promise of some exciting papers but nothing ever materialises. Anti-EBV trials never seem to get off the ground / deliver anything. What's happening wth the anti-spasticity trial. Time for Team G to walk the talk. Even Mouse D has gone quiet.

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  9. I have progressive MS and I find this site a valuable heads up on some of the research which is going on, but I have to say I'm extremely disappointed by and more than a little suspicious of the constant insistence upon focussing on current anti-inflammatory drugs for progressive MS. I don't see these drugs as being any solution for me personally at any rate. And new potential drugs like ibudilast are sort of ignored.

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  10. More science, less human interest, please.

    For those who want human interest stories, forums (fora?) abound. Research blogs do not.

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  11. I am a relative, not a researcher or pwms. I read the blog every day. The science is vital but I learn too from the exchange of views, debates, frustrations and much more. I am so grateful to all contributors for their honesty, humanity and for their time. Any changes to the blog that make it easier to maintain regular posts and opportunities to comment are fine with me. Thank you.

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  12. It's not our aim to write fewer scientific posts, so do not fear for the ones who like them! Nor is it our aim to 'dumb down' the information. What we're trying to do (and it's always a work in progress) is to make the posts as accessible as they can possibly be. That means using a plain English word when a plain English word will describe just as well what's going on as a scientific term. And it means educating our readers so that they'll be able to access the more technical posts in time, instead of shutting out completely people who are new to this kind of language and content. As always we'd love your comments and tips on how to do this.

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  13. Please keep all the science! While I enjoy the human interest posts I can find them elsewhere but its very hard to find good information on the research. Please don't focus on this as a popularity contest. It's one of the big problems with today's internet. Stick to your core goal of providing up to date information on the science and making it accessible. I would love to read many of the research papers myself but can't get access without spending a fortune that I don't have. This blog provides me the best window I've found into ongoing research.

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