Wednesday, 16 November 2011

Blog News: Is this the End?

For those of You that Don't See the Comments on the Blog.
Time to Log-On to the main site and have your say, before its too late.

You Wrote:
"This blog was great but now it's becoming same-old, same-old."

Prof G Replied: "We agree and will probably close it down shortly"

Research is a Series of Experiments......Some Succeed, Some Fail, Some Lead to Other Things, Some Don't.

Whilst G is away mulling over his thoughts, this is your oppertunity to say what you like and don't like about this Blog.

Constructive Comments please, as we never want to be your verbal punching bag, so shooting the messenger is off the agenda.

Remember it aims to be a Blog, that digests and regurgitates current research, especially with a focus on our interests. Some aspects will reappear as they do in the literature, it is the nature of the beast. Likewise, we can't promise a quick cure, because things generally don't get delivered quickly.

30 comments:

  1. I would be very disappointed if this blogspot closed. I find it very informative and your comments on research etc., and the ability to interact is great. I wish that those who are negative would stop visiting it if they don't like it. I find the MS soc so behind the times with information as to be prehistoric and the MSRC is great, but only gives the facts.I enjoy the ability to leave comments and get feedback. Please don't end it.

    ReplyDelete
  2. this will sound like cliche, but I really mean it:

    You are in the business of "factual hope". Hope is priceless.

    This blog, and a couple other sources are my positive placebo effect.

    I am told that in clinical trials this is worth 30-35 points of decrease in relapse rate.

    In other words, this blog is as effective to me as Copaxone.

    Suggestions:
    -Kill the reader's comments, they waste your time. My views and other's don't advance science (unless within a survey)
    -Easy on the ethics (Animal rights, pharma social obligations....). There are many good sources discussing these.
    -Summary charts and matrices: lots of info, good to group it and synthesise it in dedicated sections. Example: you are now discussing an update on Campath. I would be interested in seeing on the same page previous posts and publications if I want to dig deeper.
    -Breadth: Forget all the CCSVI non-sense, but if you don't cover LDN VitD..., who will?
    -Guest writers: specialist MS researcher like you.

    I have MS, but my mom says thanks.

    Antoine

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  3. Likes: the summarised comment by Prof G or Dr Mouse ie what's this research saying; Prof G's assessment of when a therapy may be available; when there was one piece of news per day.

    Dislikes: comments. People with MS and particularly progressive MS are desperate and frustrated - not surprising that they vent their frustrations. Too much time given to CCSVI. Research which just states the obvious e.g. Most people with MS have problems with walkingf, fatigue etc.

    On balance, would prefer that Prof G can maximise his time on research. I thank him for research information, but my gratitude would be a million fold more if a therapy comes out of his researcxh.

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  4. I just wanted to let you know that I happened upon this blog by chance in March 2011. I have PPMS and have been told there is very little anyone can do for me. I’m also relatively young which makes the whole affair even more unpalatable.

    The onus is on me to keep abreast of latest information and therapeutic research strategies. Thus far, the only websites I knew of was the MS Society and MS Trust, which are okay but not beneficial enough.

    This blog, however, is a game changer. It provides access to people with a vested interest in MS as well as a chance to hear the thoughts and concerns of fellow sufferers. I always felt like I was the only one my age with PPMS but since coming here I now know that isn’t the case. There are many others, some even younger than me, who have the progressive form of the disease.

    Sure, I’d like less attention given to CCSVI debates and more time devoted to exciting research for restoring lost functions. I’d even like some exposition on how stem cell therapy can aid damage caused by MS. What I most certainly do not want is for the blog to be terminated.

    I know that progressive MS is a frustrating ordeal but chastising researchers will in no way get them to fast track potential medicines. The world doesn’t work that way and therefore it’s better to listen to what they have to say rather than superficially berating the staff at Barts.

    Since coming to this blog I feel I know so much more about my disease. Even my neurologist feels upstaged by my knowledge of current and future trials for progressive MS (though he strongly disagrees with Prof G’s notion of early aggressive interventional treatment). Had this blog not been around then I’d be in the dark on most things to do with MS. It’s so great that I can pose a question about axonal nerve death and have it so brilliantly explained to me. It’s so reassuring and I don’t think you guys know what a difference knowing something like that can mean to us sufferers of MS. This blog is super-important to me and I don’t want to hear any more threats about taking it off the market.

    A life with MS is, at best, a series of disappointments and to close down this blog will be another nail in the coffin.

    Keep hope alive professors’.

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  5. This is the most important blog I read. Please don't stop!

    Whether you do it well or not well is irrelevant because as far as I know you're the only ones doing it. I think you do a really good job, though.

    MSers can be negative and for good reason, but we learn to live with that and deal with it, so should you. Be understanding but don't take it personally.

    Don't be afraid to criticize CCSVI when research warrants it.

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  6. This blog is as useful as you want to make it - if you don't find it useful, it's just as easy to stop visiting! I personally find it informative and I see research items which I would never come across on other websites that I use for MS. I like the fact I can ask questions and have someone who is in-the-know answer them. It would be a real shame if the blog closes down - please keep it open!!

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  7. I often see information on here that I don't have access to or don't see elsewhere, despite being subscribed to Google Alerts.

    I like the fact that I can ask questions and have research "explained" to me, as I'm very much interested in staying on top of the latest happenings but don't always understand everything. I like the variety of topics (I don't agree with people who say it's all about anti-/pro-CCSVI) and many of the blog posts have got me thinking about areas of MS that I hadn't necessarily thought about before, given that my MS is relatively stable and mild at the moment.

    I would be extremely upset if the blog was to end.

    For all those who think it's no longer useful - you don't have to visit it; and to all those who use it as a means of attacking Prof G, his team or other posters - you are ruining things for the rest of us and are in danger of denying us an invaluable resource!!

    ReplyDelete
  8. I’ll be honest with you all. To this day I feel that a diagnosis of MS is essentially a signature on something as good as a death warrant. Even despite being on DMTs, I have developed secondary progressive MS, so I strongly disbelieve that existing medication prevents progressive MS.

    The teams at the MS Society’s research centres have told us that they’ve made a breakthrough, and they now need to raise the funds needed to keep the project on track, yet I haven’t read enough on this blog reporting on this alleged major breakthrough. It’s material like this that I want to see this blog analysing and dissecting. These are big stories that affect all of us involved with MS.

    Walking is a big issue in MS and I believe more scientific deconstruction of what damage happens in MS that affects walking will be welcomed. I also want to know if walking damage in MS is being seriously worked upon other than basic symptomatic relief from Fampridine which isn’t really a proper medical breakthrough.

    I appreciate this blog and don’t want to see it end.

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  9. This blog is invaluable in many ways not least in the way that complex science is distilled and explained simply, informatively and insightfully. I am a big supporter of this blog, it provides an essential and irreplaceable service. I realise that it must take a fair bit of time to keep it going, but I want you to know that there are people who are very grateful that you do it.

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  10. I hope this blog doesn't end. I admit not all posts interest me equally, but I realize that what interests me may not interest another reader. But scales that measure symptoms or disability progression, while important for the nuts or bolts, are not the most interesting to me (and apparently) some of the other readers.

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  11. This blog is great. I would be disappointed if it ceased to exist. I find it a great resource of digested science that is objective with useful opinions at the end of the article. Maybe less articles every week, but higher quality articles about the game changing research out there. What I don't find useful and quite disappointing is all the comments from anonymous people attacking doctors and researchers who's main objective in their career to help people w MS. I find this cruel and counter-productive.
    Keep up the great work Prof G and MouseDoc

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  12. This blog is becoming same-old. I don't think you bother with it. I'm more interested in scientists actually working to fix MS than wasting time talking about things that don't interest most of us. I think if you want to carry on then fewer posts focussing on more groundbraking research will be better.

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  13. Please don't stop the blog.

    Also, Vasilis Vasilopoulos, stop the crusade for CCSVI. I think that your tone is not helpful and you often try and undermine the professors' work. You also try and indimidate casual commentors and that's not cool.

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  14. I think this is a valuable resource and I would urge you to continue. I also know people with MS and their carers who find it very helpful.

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  15. "This blog is becoming same-old. I don't think you bother with it. I'm more interested in scientists actually working to fix MS than wasting time talking about things that don't interest most of us."

    Which is why the main men are considering closing it, though you seem to be in the minority at the moment. Just because something doesn't interest you, doesn't make it uninteresting!

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  16. I have MS (RR) and I think blogs like this are important to the patients. Obviously I think we'd all trade anything for a cure, but I think this is reassuring to some of us, having this look at research that's going on.

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  17. Please don't close this blog! I'm grateful for the info Prof G and the rest of his team gives us, knowing that they are in no way obligated to do so, but genuinely care enough to establish and maintain this blog for pwMS and their caretakers.

    I'm currently auditing an Immunology course at the university where my husband teaches and I know that such resources are not easily available to others. This is a huge reason why this blog is so valuable. Prof G and his team not only keeps us abreast of the latest research but also breaks down the findings and explains their relevance to those of us who don't have a background in Biology (including myself).

    To those individuals against Prof G and his team (especially the ccsvi fanatics), the comments of Anonymous who posted at 1:21:00 PM bear repeating: "For all those who think it's no longer useful - you don't have to visit it; and to all those who use it as a means of attacking Prof G, his team or other posters - you are ruining things for the rest of us and are in danger of denying us an invaluable resource!!" Indeed, if you find the facts too much of an inconvenience, then please unsubscribe from the blog and go away. Censoring researchers isn't going to help any of us!

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  18. This is my first port of call when I get a chance to spend a bit of time on the internet, because I know I will find up to date research and authoritative comment on MS research. Like most of the (more articulate than me) commentators above I am heartily disappointed that you are thinking of terminating it. It is such a good way of communicating directly with scientists who are both knowledgeable about the disease and the science, and are prepared to respond to questions to help distribute that knowledge more widely. If there was some way of electronic way of forbidding the ending of this blog, I would do it!

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  19. I don't have MS, but the company I work for is very interested in studying this disease. I read the blog daily as it has exposed me to a wide array of issues that people with MS deal with, the clinical trials and their results, and additional knowledge that I wouldn't have gotten from reading the primary literature alone. I am not even sure how I stumbled upon the blog. As much as I enjoy reading the blog posts in their succinct form, I enjoy reading the posted comments (and responses) even more. There is a certain urgency that is conveyed, some incredibly sad, and some, inspiring. I wish everyone the very best and thank Dr. G and MouseDoctor for the daily dose of MS knowledge.

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  20. I stumbled on this blog in March or April (can't remember how). I wish I'd found it earlier because it's just the resource I've been searching for in 5 years of dealing with MS. I think it is a great blog and it has been REALLY helpful in many ways. Also, I have become interested in things I would not have bothered about earlier.

    Since you ask about likes & dislikes, here is a minor dislike: The posts about research have become a little mechanical. I don't think you need to always copy-paste the whole abstract into the blog. I prefer the more freeform posts from before you started the current format.

    The blog posts are not 'same old same old' but the comments are. Maybe the same questions and same complaints come up again and again as new readers find the blog. But I think it's often the same old people with the same old complaints. The complainers will always have more to say than the rest of us who like the blog.

    Somebody said "... prefer that Prof G can maximise his time on research": This is a guess but I doubt Prof G would neglect patients or research or teaching for the sake of the blog. I'm afraid he might be neglecting personal stuff and that makes me feel guilty. The graph in the last post shows that the number of visitors keeps going up. Two professors with fulltime jobs cannot spend more and more time responding to blog readers, even if they are all perfectly polite & reasonable.

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  21. Yours is my go-to blog for both keeping abreast of research and also understanding it in layman terms. The Conclusion section is invaluable. Please keep this blog alive.

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  22. I have to ask you what kind of response do you all expect from commentators when, for example, Prof G reports on a potential drug that may promote regenerative functions in PwMS but will take 15 to 20 years to get to market. Often it is Prof G himself who poses the question, ‘what do you MS’ers think about this?) This then incurs a variety of angry responses.

    Yes, I suppose I am one of the ‘same old complainers,’ but you should understand why I get so grumpy when I hear about how slow progress is when it comes to progressive MS. I’m a 26-year old girl (please don’t say 26 is too old to still be called a girl) who is now in a wheelchair. My hands are feeling weaker also. My MS is essentially a ticking-clock. It just gets worse, not better. Once I lose a function it’s gone forever; end of; period. It’s a horrible experience and a pretty hopeless one.

    If there is a potential drug that can make me better, or stop me from getting worse, but will take two decades to be licensed, I have every right to express a degree of vitriol. I complain to Prof G because he’s the person telling me about the research. If it was my mum telling me about it then I’d complain to her but she doesn’t have a vested interest in MS the way Prof G does.

    I don’t mean to get angry Prof G but MS is a deeply frustrating disease. If you don’t want people like me to say that they are very disappointed by the lack of real-term progress regarding progressive MS then I suggest you do not court opinions from us. I can’t complain to anyone else because they won’t understand what I’m complaining about. You do.

    My apologies to all your readers who think that commentators to like me are ruining this blog. I am not one of the people who want this blog to end. I want it to continue.

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  23. I NEVER post comments on websites but feel so strongly about the blog that tonight is a first!

    I love the blog. I think it has unique features that the main MS charities lack: you give it to us straight and stretch us.

    I don't often read the comments that people leave as I find them dispiriting and disrespectful, but this is the case on many websites.

    I admire that you want a two-way dialogue, but think that sometimes you are too responsive to the people that comment. It must be hard not to take it personally, but the comments are misdirected. This is unlikely to ever change whilst you are posting in a clear and frank way about the often frustrating world of MS research.

    My other suggestion is that you could perhaps post less as somethimes I find there's too many posts and the better ones can quickly get replaced. This would also make it a bit less time consuming for you.

    Thank you for your hard work and please keep the blog!

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  24. A couple of suggestions:

    - use the survey function to see if people want the blog to continue.

    - I think most of us find it useful, but when there are posts about treatments which may become available in 15 years time, the relevance to us quickly fades.

    - if you decide to continue, I would limit the posts to 4 a week (MS shouldn't consume your loives a it does for us.

    - bear in mind that we once had fulfilling lives. There are often questions about risk - I'd take any risk to get my old life back. This is very dificult to understand if you don't have MS.

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  25. To the 26-year old girl:
    Anybody can understand if you are depressed about missing treatments for progressive MS. But it is not nice to vent your anger on people who are working hard to help and trying to find shortcuts for speeding up the research. As an adult, you surely don't think it right to blame the person who delivers bad news.
    I'm not sure what you mean by 'vested interest in MS'.
    (From somebody old enough to be your mother and in the habit of sermonising to my own children)

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  26. Dear Stuart (views& News)

    Please contact g on (g.giovannoni@qmul.ac.uk)if you have some suggestion.

    We remove advertising from the site as matter of course..no disrespect for the work you are doing.

    There are many other news sites of which this is one of many

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  27. My selfish vote is for the blog to continue, but not if it's a burden. Why does Prof G. think it's "same old?" I (and clearly many of the other commenters) don't think that. So far as I can tell there is nothing out there comparable for people with MS interested in keeping up with new developments. Most of what you get are either press releases or journal article abstracts with little or no commentary and no opportunity to ask questions of someone who knows what they're talking about. I would like to see the comments continue. I just skip over the unhelpful ones, but for you I'm sure it is difficult to deal with ongoing hostile and combative comments. I don't mind lots of posts, but fewer would make less work.

    Certainly not all topics resonant equally with everyone, including me, but I've also been exposed to things I might not have paid attention to. And unlike some others, I found the discussion on ways to better measure progression in MS to be interesting and worthwhile. Perhaps because I was in a clinical trial and there was a complete disjunction between my perceived experience (continual slow decline) and the numbers the trial got (oscillations with no clear progression). I have less faith in the ability of clinical trials to overcome noise having been in one and if we don't have accurate ways to measure progression holistically (especially with no biomarkers) than we don't have effective clinical trials and we don't get the best meds (at least until we get the med described by George Schumacher in http://content.karger.com/produktedb/produkte.asp?typ=pdf&file=000151525 "When somebody finds an effective treatment for MS, you'll know it without the need for sophisticated statistical calculations.")

    For those who thinking walking is under-covered, I wonder if these new exoskeletons/wearable robots will be of any help (http://www.scientificamerican.com/article.cfm?id=breakthrough-may-help-spinal-cord-patients-experience-tactie-sensations). They managed to get primates to move and feel things with only their thoughts. If the brain is messed up, this won't help, but I have (I think) read that a lot of motor and sensory damage in MS comes from the spinal cord, which could be bypassed in this way. For me, I am not happy that my walking is deteriorating, but losing my vision or use of my hands scares me more. And I went through a period of such bad fatigue and cog fog that I could not even stay focused through an ordinary conversation. I got nothing done and could enjoy nothing. Some things are worse than death.

    We all have our fears and frustrations, but as someone said above, it doesn't help to shoot the messenger.

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  28. If you keep the comments, I would love it if the comment feed worked like the ones where the title is the title of the blog post and you get the whole comment not just a truncated version.

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  29. Not sure how this is can be done with the mechanics of the blog. So you only get details of the poster. But click on the comment and it takes you to the post.

    The comment is limited to 500 characters at the moment some people write a book so in variablly some posts are cut. Maybe G will change this to say 750-1000

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  30. I see now that the comment feeds I have that work like this all come from WordPress so maybe Blogger just works differently.

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