Saturday, 26 March 2016

FeedbackSpeak: Are we losing our mojo?

Comments and suggestions needed to improve the blog? #MSBlog #MSReasearch #FeedbackSpeak



"I started this blog in September 2009 in response to CCSVI, which seems to be less of an issue 6+ years later. The blog is now into its 7th year. In that time we have expanded and added many different things. We now have many more contributors to the blog and get the occasional guest bloggers involved. We have become political taking on government policy, pharma, NICE, the NHS, other researchers and even neurologists, to name a few. We have expanded from simply being a site to interpret research findings into providing clinical advice, albeit generic advice, education, news, personal stories and anecdotes, and even the occasional fundraising initiative. The blog is truly a 2-way vehicle and several of our current research initiatives have been driven by you. We have been approached by third parties to monetise the blog, i.e allow sponsored posts (advertorials). Google keeps harassing us to activate Adwords so that we offer you deals, etc. You have said no to advertising. I feel the current format is getting quite jaded and needs to be rejuvenated. To do this we need an administrator to help with editing and increasing the number of guest bloggers. Having a site administrator would also help with the NeuroSpeak case studies, which some of you found helpful. Before embarking on a major overhaul of the site any ideas and suggestions from you would be much appreciated. Thank you."

78 comments:

  1. Firstly, I would like to say thank you for running this site. It is truly unique. I am not aware of another resource out there like this. You need much more recognition for your activities. It has become my go to site for information on MS and I urge you not to stop. Have you considered taking donations from the public to support the site? Similar to what Wikipedia does? How about getting a volunteer to help run the site? I am sure there many people with MS who would be willing to help.

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    1. The crowdfunding of the website is a good idea. I would give money or would be willing to help in any other way. Please stay ad-free! I moved back to France and this blog is still and will remain a reference to me. Thank you!

      Delete
  2. We have to accept that many things run their course. I am grateful for the efforts which have been made by all. There are two areas which have, in my opinion, reduced the value of this blog. Firstly, all the political posts i.e. the junior doctors strike. I have political views, but I visit this site because I want to find out about MS research breakthroughs / news. I'm a person with MS so want to draw some hope from the information posted. The key reason the blog has lost its mojo is that there hasn't really been any earth-shattering research news over the last six years. Alemtuzumab approved = great. Ocrelezumab may become available in the next 2 years. What about treatments for progression or repair? Does EBV cause MS? Is MS an inflammatory disease which causes neuro-degeneration or vice versa? What has Team G achieved over the past six years (genuine question)? I mean achieved something which MSers benefit from now. Six years equates to c25 conferences (6 ectrims, 6 actrims....). Again, i have to question the value of this gravy train of international jollies. What we have is a pyramid where we are stuck at the bottom level and a call for brain health / early highly effective treatment (which I fully support). The message for those with PPMS / SPMS is nothing for you / watch yourself disintegrate. It would be a shame to close it down fully - I love the EDSS tracker. What about just a first day of the month post - summarising any really important research published over the previous month and the occasional post following a big conference (AAN, ECTRIMS etc.)? This would let you guys get on with your real job.

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    1. Argh this old chestnut ...w"hat had you achieved and what have you done for MSers"....frankly read the blog you will see some of the things ProfG has been involved with and one day we may tell you other things.

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  3. An idea might be to involve external people who have something to say as well do something for people who suffer from MS. Some of the articles are very very medical and others relate to the everyday person so maybe run two separate streams.

    What ever happens do not allow it to die, it is too important but maybe less is more.

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  4. I agree fully with the first Anonymous (Firstly, I would like...) and much less so with the second (We have to accept that many things...). The only part of the second I might agree with is the comment about "political," though I suspect your motive is simply to improve health care delivery. Thank you for doing what you do, and I hope you find an effective cost and admistrative way to continue doing it. You enhance the life of this MSer tremendously.

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  5. First up, in my view, this blog is far and away the best resource for patients on the net - bar none. So a massive thanks and well done for that - and for the hours and hours you must put into it, often in return (broadly) for becoming the target of everyone's frustration! :)

    A few ideas though on how to "get your mojo" back:

    1) The views of the neurology profession, pharma, and academia/research are brilliantly represented in your blog posts - but it strikes me that what is missing is the patient perspective. Yes, you get this in the comments, but I'd love to see occasional guest posts (moderated by yourselves of course) from patients. It's an important perspective that is missing currently.

    2) It would be good to have some mechanism to upvote comments. Less bothered about down-voting (which just leads to trolling), but sometimes commentators ask important questions which don't get answered. Fully appreciate this must be a massive drain on your time, but maybe enabling such a mechanism would help to weed out the most important questions to focus on?

    3) I know this is a difficult position for you guys to be in (in terms of giving advice), but it would be great if there was a bit more openness around things to try that could help. If we take neuroprotection as an example; There are obviously a raft of agents that have shown promise here. You would say "if I tell you which have shown the best results so far, you'll go and try it so I won't do it". I get that position fully. However, on the flipside, if you've got progressive MS, trying nothing seems like a worse option than trying something that has *some* chance of success. Would be good to relax the rules on openness (carefully positioned of course) to enable those in the most dire of situations to hedge their bets.

    4) Lastly, in the vein of your crowd-funding efforts, would be great to allow the community to buy in to get access to early info (e.g. Charcot results, neuroprotection results. etc.) ahead of published trials.

    That's my tuppence worth anyway. Appreciate the latter two pose some challenges, but just ideas.

    Cheers,
    Matt

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  6. I am very grateful for this blog. I don't expect to see my comments posted the same day as I press publish and not at all over the weekend.
    I had such a rapid, severe and traumatic introduction to MS and this blog has really helped me understand MS, Thank you.

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  7. The blog is a crap vanity project. Close it down.

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    Replies
    1. Another way to restore mojo could be to not even bother posting trolling comments like the above. Waste of everybody's time!

      If they've got nothing useful/ms related to say or are playing the man instead of the ball, stick them in the bin.

      Delete
    2. Dude - begs the question of what you're doing here if you feel that way??

      "I hate your blog so much that I actively choose to visit it every single day, and comment on it!"

      Idiot.

      Delete
    3. Re: "The blog is a crap vanity project."

      Thanks for taking time to visit our blog and assess it. We will take your view into account when deciding what to do with the blog long-term.

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    4. The blog is a tremendous resource but I will be happy when the day comes to take it down. Maybe Alemtuzumab has already accomplished this. Time will tell.

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    5. I don't understand people who watch rubbish on TV then complain to Points of View, or people who bother to visit and comment on a website they clearly do not respect at all and which holds no interest for them.

      But neither do I understand why it is worth replying to these people. Come to think of it - why am I writing this? I've got an excellent novel to read...!

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    6. Can I just point out that when someone comes along and tells you that the blog is really helping them or ask a good question, the reply is often crickets? But say something negative, and Team G lines up to reply. You're a rock star around here. VV? Dr. Dre? Y'all couldn't get enough of them. Everyone else seems to be riff raff. You don't need an administrator to get your mojo back. You need more detractors.

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    7. Thanks for your kind words. As long as its on topic and not abusive, we'll post it.

      Delete
  8. I completely agree with Matt on patient participation. I was disappointed last week when I inquired about MS patients attending xxTRIMS and was told that they are not designed for us. It seems like the whole MS landscape is being run by reasearchers, patient advocacy groups, and of course, pharma. Afterall, MS is a lifelong disease, and it can be a little frustrating to not have any say in development of new ideas or access to research that's been going on.

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    1. Maybe you can be join the research network that the MS Society runs then you can get involved.

      Not to have a say in research.....The Canadian MS Society spent many millions of dollars researching CCSVI because of patient imput, tons of money is being spent on stem cells because of your interest. We are doing tirals before we are reall ready beecause of responding to your imput...not sure why we have not investigated LDN.

      Delete
    2. I haven't had MS for so long to know the history of CCSVI. And both CCSVI and stem cells are big and sometimes controversial topics. What I meant was ability for patients to participate in a constructive dialogue with researchers about their studies. You guys are the experts, and this blog definitely a good at answering questions from patients, but if we can do something so this becomes more of a trend.

      Delete
  9. As a PPMSer, I would like to see a special section dedicated to what's going on in the world of progressive MS research, anything hopeful, anything worth trying, worth asking one's neurologist about. What puts me off visiting this blog is all the drug-pushing for RRMS, which is no use for people like me. Hearing the repeated, hammered home message about treating early does nothing for me but make me turn away from the computer, gaze out the window and sigh.

    ReplyDelete
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    1. "What puts me off visiting this blog is all the drug-pushing for RRMS"

      Really that's all this blog is about. Show casing the latest product pharma has to offer.

      Any real insight into what is being done to cure or repair the damaged caused by MS is not going to come from Team G. Those people are at work investigating these avenues. Team G are nothing more than sideline commentators.

      Delete
    2. Re: "Team G are nothing more than sideline commentators."

      Yes, exactly - that is why I started the blog to be a sideline commentator. I realised that I wasting 50% of face-to-face clinic time discussing issues such as CCSVI, LDN, etc. The idea was to start a blog for our patients so that they could read about our opinions on these issues in their own time.

      Delete
  10. The infinite complexity of the human immune system is hurting my MS brain. More repair coverage using stem cells, novel genetic engineering approaches to modify MSers genome (i.e. snip out latent EBV from B-cells), repair of black holes with neuroprogenitor cells, I agree with anon 2:47:00 regarding the relentless "drug-pushing for RRMS", enough already.

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  11. I really appreciate the info here and all the hard work you do every day. It's a great resource to keep up with the literature and have it explained for regular people. Whatever you decide to do with this thing is OK with me.

    As far as the progressive MS people's frustrations goes, I understand. I decided to participate in an SPMS rituximab trial, partially from info here. I'm taking simvastatin off-label, using info presented here to convince my neurologist to prescribe. You have presented a good argument that cladribine may have value for progressive MS. I'm trying to get that going with my MD.

    In short, I get info and hope. Thank you.

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  12. I love this blog. I don't think any mojo has been lost. I agree somewhat with Matt above except for giving medical advice on using unproven drugs... better left to personal care team. The political views are also great entries, where I may not agree (very rarely though), but I always learn something. The only very, very small criticism i would make is that sometimes an entry might be made in haste - understandable - and so the grammer and spelling might not be the best. A point may be lost or difficult to interpret. However, if that is the small price to pay for this resource just ignore it! Thank you so very much. You guys rock!

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  13. This website is extremely educational and much appreciated. I think it is more than fair to be financially reimbursed through donations or advertisements to support your time and efforts. If we do not like an advertisement, we will not click on it.

    MS research seems to have a heavy bias towards the inflammatory component of MS, which is great for future MS. However, it offers very little towards neurodegeneration, remyelination and neurorestoration, which does not help any MS patient that has any disability today. One suggestion would be to divide your reviews into the 4 components of Dr. G's MS treatment pyramid to see really how far away from the finish line we are.

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    1. We havent really started with neurorestoration yet

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    2. MD, you may look beyond MS - for example, in the "unrelated blogger comments" section today

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    3. Yes I could do that ta., I'll have a read but dealing with spinal cord injury is going to be easier than dealing with MS and is a level of complexity less than dealing with MS, where the disease is ongoing

      Delete
  14. Love the blog, it has patients much more informed and willing to ask more helpful topics to their health professionals, rather than the esteemed academics always trying to say 'it's over our heads'. Please keep it going - it's a valuable resource of information and very loved. Some ideas to help people navigate the depth of the site could be content tags at the bottom of articles so you can be taken to all articles on a certain topic eg Vitamin D, Progressive MS, DMDs, etc. Those 'you might also like' suggestions at bottoms of articles could work well here too, readers don't always view things in such a chronological way, so good to provide an alternative. Although it is great to scroll down the left hand side and make sure you haven't missed anything you're interested in.

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  15. There is not much I'd want to change. The blog remains the best source of information available and I wouldn't want to lose that. Guest MSer posts would be fab - perhaps an MSer perspective on a specific subject, recent developments in DMT's / policies etc. There is little platform for MSers to voice their views elsewhere - even amongst the charity organisations set up to do just that.

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    1. Guest posts but I'm afraid you can lead a horse to water but yiy cant make them do anything

      Delete
  16. I was very disappointed that this blog misrepresented Stephen Hauser's claims about the long-term effects of rituximab:

    "Stephen Hauser dropped a bomb on the stage at ECTRIMS when he mentioned that many of their patients with active RRMS treated on rituximab for many years have gone onto to develop secondary progressive MS."
    (Quote taken from here: http://multiple-sclerosis-research.blogspot.com/2016/02/thinkspeak-do-we-really-need-wrecking.html)

    Hauser said no such thing. Here is the link to his remarks: http://onlinelibrary.ectrims-congress.eu/ectrims/2015/31st/116934/jerry.wolinsky.panel.discussion.and.audience.q26a.evolving.treatment.options.html?f=p6m1e891

    His remarks start at 12:00 in the video. Here is what he actually says:
    "There was a poster presented by Dr. Cree, who may be in the audience today, of our San Francisco 10 year observational cohort data. This is in an actively treated cohort followed prospectively for 10 years with over 90% follow-up. Even with treatment, over half of our patients are still getting worse."

    He says *absolutely nothing* about patients treated with rituximab for many years developing SPMS. Just to be certain that I'm not misinterpreting him, I looked at the UCSF poster which he referenced. No patients in the cohort who were treated with rituximab for 10 years, and only 23/365 patients were treated with high potency drugs (which also includes natalizumab, and possibly other drugs) for 6-8 years.

    These data do not support any conclusions about the long-term efficacy of rituximab. Hauser made no claims during the ECTRIMS panel session about the long-term efficacy of rituximab. Why did you misrepresent what he said?

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    1. You dont work for Roche do you? :-)

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    2. My claims above are easily verifiable; you can determine that they're true (or false) independent of my identity.

      For what it's worth, I work at a university and I'm a patient who is contemplating switching to rituximab or ocrelizumab in the next few years. The claims about Hauser's ECTRIMS remarks had me freaked out for a while -- and for absolutely no reason, since they were a misrepresentation of what Hauser said.

      These were not some throwaway comments by Dr. Giovannoni. They were central to a line of reasoning that he was putting forward, that CSF plasma cells are driving progression. If this is true, it has serious consequences for RRMS patients trying to plan their futures. It means that they should be trying to get onto therapies which target CSF plasma cells, such as small-molecule chemotherapy agents.

      This is why Dr. Giovannoni's misrepresentation of Hauser is so egregious. My life will take on a very different trajectory, depending on whether anti-CD20s are effective at preventing SPMS.

      Delete
    3. "Who is contemplating switching to rituximab or ocrelizumab in the next few years". Once ocrelizumab arrives I suspect the descision may get made for you, but I cannot comment on what Dr Hauser did or did not say and even if people did convert to SPMS, without knowing when people started treatment then it is not possible to call.

      Importantly I am not sure if ProfG said when he believed it was said,

      The data will be out, maybe ProfGs comments will hasten this publication there are plenty of people e.g. in scandernavia that are being given rituximab.

      Anyway there is not point in me responding further.

      Delete
    4. If over half their patients are getting worse despite being treated with rituximab answers your question. If I am not mistaken from Prof G's recent post not even ocrelizumab stops PPMS getting worse; it appears people with PPMS still get worse only slower. Clearly anti-CD20 is not the panacea we are looking for. Any thoughts?

      Delete
    5. "If over half their patients are getting worse despite being treated with rituximab answers your question."

      If you watch the panel session (which Dr. Giovannoni chaired), Hauser's comments are totally unambiguous: half of patients treated with any drug (e.g. interferons, copaxone, etc.) had disability progression. Hauser simply made no claim about patients at UCSF treated with rituximab.

      "I cannot comment on what Dr Hauser did or did not say"

      You could just watch the video. I get it, you want to defend your colleague, but this was sloppy.

      "Anyway there is not point in me responding further."

      You could issue a correction to the post. If I can't trust the factual claims made in this blog, why should I continue reading it?

      Delete
    6. Re: "I suspect not. Stephen Hauser dropped a bomb on the stage at ECTRIMS when he mentioned that many of their patients with active RRMS treated on rituximab for many years have gone onto to develop secondary progressive MS."

      Prof. Hauser is trying to manage expectations. The story is the same with all the DMTs, including the high efficacy ones. We have seen this with alemtuzumab, natalizumab and HSCT. I suspect if you wait too long there is too much damage and clinically apparent SPMS emerges. This is the reason why the phase 3 alemtuzumab programme was in very early active MS. The message is loud a clear; if you want to prevent, or have a chance of preventing, SPMS you need to treat MS early and effectively. On the other hand we may have things wrong and the processes that drive progressive MS have nothing to do with autoimmunity and hence these therapies won't work long-term. This is an experiment that is currently running and we will get an answer in the next 10-15 years.

      Delete
    7. With the open label alemtuzumab highly-active RRMS population ~5% have developed SPMS with a median follow-up of 7 years.

      Delete
    8. Re: 9:51 and 9:52

      This is fine, I realize that there is uncertainty about the long-term prognosis for patients treated with effective drugs from onset. It is perfectly reasonable to discuss this uncertainty, and the various questions about the disease which remain open.

      This was *not* what you were doing in your post, however. You claimed that there was evidence, discussed by Hauser, showing that patients with long-term rituximab treatment progressed. This was simply false. Hauser made no such claim.

      There is a major difference between saying that we don't have evidence that rituximab prevents SPMS, and saying that we have evidence that it doesn't. If I can't rely on this site to make this coarse-grained of a distinction, then I can't keep reading it.

      Delete
    9. Sounds promising. What would you expect the SPMS rate to be at 7 years (natural history)?

      Also, do you know (ballpark) median EDSS/disease duration at the point of commencing treatment please?

      Thx
      Matt

      Delete
    10. Re: "Stephen Hauser ..."

      Thanks for pointing out my misquote. I have corrected the post that now states the following: "Stephen Hauser mentioned to me at ECTRIMS that many of his patients with active RRMS treated on rituximab for many years have gone onto to develop secondary progressive MS."

      Delete
    11. "For the record":
      It was not only MD Stephen Hauser who tried to cool down the hype around this immunosupressive agent ocrelizumab. Several other MD´s have been catious about this ms agent. In my Point of view, there have been to many get carried away views on this agent. It will only up in disapointments for those patients who are willing to take the risk with this Ocrelizumab (CD 20) agent.

      And as for criticizing prof G earlier statement about the fatc, that many RRMS patients who were on Rituximab progressed to SPMS, all according to MD Stephen Hauser, I think, no offence ment, you really splitting hairs.

      The essence of the content remains: obviously, at least the well respected MD Stephen Hauser have some doubts about Rituximab abilities to prevent RRMS patients to progress into SPMS. And since Ocrelizumab and Rituximab have the same Mode of action (CD20), it raises really some serious questions about Ocrelizumabs abilities to prevent CDP/EDSS in this RRMS patients

      The only "error" or "mistake" prof G made, was that you, and maybe others, were given the impression that MD Hauser made this statement publicly on stage. But it was mentioned to Prof G directly off stage in dialogue with MD Stephen Hauser:

      So the fact that many of MD Stephen Hauser patients treated with rituximab have developed SPMS remains. So essentially prof G was correct in his original statement with regard to that fact.


      Lastly, on balance, I think this signature Wheelchair Kamikaze contributed with a good post on the subject last month.

      http://www.wheelchairkamikaze.com/2016/03/ocrelizumab-ppms-trial-data-released.html



      Delete
  17. The first thing I do in the morning is make a cup of coffee. The second is read the blog. When I was first diagnosed I was lost. Family and friends simply did not know what to say. I am a scientist and driven by data. The blog is a blessing. I learn something most days and have taken many new questions from the blog to my doctor.

    As for changes: guest blogs would be great. More questionnaires with responses from patients with the ability to see the results. Since pwMS cannot and often do not travel to meetings, your insights and synopsis from these meetings is very helpful.

    I do not think a fee should be mandatory, but believe many of us would be willing to donate.

    I also think that everyday is a huge task on top of your everyday responsibilities. Maybe once a week would ease your burden and still provide much needed information for us.

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  18. This blog is unique in providing views of highly competent researchers. Is it always unbiased? No, but it should not be - there are real people running the blog, with their own opinions. Your efforts to make research a bit more accessible to people with MS are greatly appreciated. After regularly reading your comments, I feel better equipped to go back to primary publications, and evaluate the validity of the authors' claims.
    The most helpful posts, in my opinion are the ones providing some context for specific published work (e.g. this was tried 10 years ago and failed; better yet, explaining different, sometimes conflicting opinions on the subject).

    In addition to regular quick posts on individual publications, I would really like to see occasional broader summaries of selected topics. I know that these mini-reviews, adapted to our level of (in)competency, would take a long time to write - but they will give a better appreciation of the progress of science.

    Thank you for everything you are doing.

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  19. Dear MD,

    Am sorry that you feel that you have lost your mojo. We all know that there is a sea of BS related to MS and that this site is the dyke. It was very generous of you to let the readers make the decision about advertising, but we are not the people that need to keep the site running. I think that you should consider making the site a not for profit so that it can support a team of professionals to manage the content.
    What about picking some goals? E.g. Cladribine then let’s start raising the approx. $40m together to fund the trial.

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    Replies
    1. ProfG wrote the post not me.

      Once a site has money then someone will be after it. The content will still be an issue even with an administrator, unless they are creating content rather than curating it.

      Cladribine will be arriving in EU again by 2017 I guess, but in the form of movectro I suspect. Whehther we can get any study funded against this backdrop remains to be seen.

      Delete
  20. This blog is the best resource ANYWHERE. I may not want to read all of the posts, I may only partially understand some of them, and others I have absolutely no hope of ever comprehending. Regardless - I have learnt so much from this site, and feel much less alone in my fight with MS. Because of this site I have some hope of holding a partially reasonable conversation with my neuro (well - as much as can be fitted into a rushed 15 minute appointment every six months). This site has made more difference to my life with MS than anything else has, and helped me make my own decisions - some of which my neuro has probably not agreed with, but at least because of this blog he can't push the "Me Doctor, you patient" arguments at me and expect me to swallow them without question - you guys HAVE empowered me.

    Understandably with the Barts crew all being UK based there can sometimes be a bit of a focus on UK and NHS issues but the number of regular site visitors from outside the UK will have increased very significantly over the time since the site was established. Perhaps one way to tidy this up would be to put UK and NHS specific posts under a "UK NHS Speak" label, and save the "Political Speak" label for issues which affect PwMS more widely.

    Perhaps an option for raising ongoing funding for a site administrator could be to run an ongoing crowd-funding page. Yes - the incoming dosh would be somewhat unreliable, but I know I'd be happy to chip in a little bit every so often. And lots of little donations from people around the world may well add up to enough to help fund an administrator.

    I don't know how the "Comment as:" bit works technically, but it would be good if that could be utilised for some "names" which help readers understand the perspective the commenter is coming from - e.g. Anonymous Patient, Anonymous Neuro, Anonymous Carer etc (hmmm - thought bubble arises - could include Troll as well maybe...).

    Would it be feasible to have a companion Barts MS Blog Facebook page? Not one that has every single article put up there, but keep it just for the ClinicSpeak articles which are of interest to MS patients. The headliner article would have to be the "Education: What's an MRI?" post. I posted links to that article on several other sites and the positive feedback about the article was amazing.

    Finally, regardless of what you decide to make in the way of changes, please keep this blog going. I have seen it expand and grow even in the two years since I found it, and it will have made a positive difference to so many PwMS.

    PS - don't ever let MouseDoctor be silenced - he does shoot off the occasional comment or response with perhaps a bit too much haste, but his acerbic style is always worth a read (once you have managed to translate the typos!).

    ReplyDelete
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    1. ACERBIC =

      sharp, sarcastic, sardonic, satirical, scathing, cutting, razor-edged, incisive, penetrating, piercing, biting, stinging, searing, keen, caustic, trenchant, bitter, acrimonious, astringent, harsh, severe, devastating, abrasive, wounding, hurtful, unkind, cruel, vitriolic, virulent, mordant, venomous, waspish, poisonous, spiteful, vicious, malicious

      That is from the dictionary wonder which word you would pick

      Delete
  21. Thank you, I read the blog every day and am very thankful for it. I have RRMS and have a scientific background and although I don't understand everything that is published by any means this blog has really improved my knowledge of MS research and clinical practice.
    I prefer the more clinically based topics but that is because they are easier to understand and I can relate to them more.
    How many neurologists read this blog? Does it influence their practice? Is it mostly PwMS who read this blog? Producing a blog for medics and for PwMS is a difficult balance.
    I think if you think you are losing your mojo it is because you are tired and maintaining the blog is onerous and trolls with their spite, cowardice and venom can wear down morale however strong one is.
    What is expected of the blog? Is it for education, updating and discussion or is it for a more passionately held belief in improving the lives of PwMS and influencing other neurologists, pharma, the NHS and government. That is a wearisome battle.
    Please keep with it but hopefully with more support (do MS charities make grants for blogs like this with a good track record)? Is crowdfunding possible, or not so good for on-going projects?
    I feel this blog does create some change. The research side if things will always be too painfully slow for PwMS but that is a worldwide problem. The changes are in the expectations for treatment for PwMS (we are better informed) and hopefully the move to more proactive MS management and treatment by neurologists, though I have to say that is also painfully slow but I do think it is happening. I think this blog pays a part in that but only the Barts team can know if their effort is mirrored in proportionate change.
    thank you and best wishes.

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    1. How many neurologists read this blog? Quite a few we think

      Does it influence their practice? No idea

      Is it mostly PwMS who read this blog? A mix we guess but as we dont know who reads unless people tell us..e.g. we have had a few irate calls from pharma

      Producing a blog for medics and for PwMS is a difficult balance.

      Delete
  22. This is a brilliant, brilliant site. I check it every day that I go on the internet at all and have taken several decisions about treatment because of things that I have read on here. I don't believe the site has lost its mojo at all but I can understand that it must get tiring for those running the site, doing it for more than six years. Please don't change the fundamentals of what you are doing - this site is so important for many people with MS, who would not be able to get the information that you provide any other way.

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  23. Thanks, this site is a great resource run by professionals that know their stuff. The only mojo that is lost is the dissention that exists on the use of stem cell therapies. There is no arguing that different types of stem cells (hematopoietic, mesenchymal, neural progenitor) will be a big part of neurodegenerative disease.

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    1. Proof is in the pudding.At the movement there is too much hype and not enough solid data.
      There is lots of promise but the deliverables so far produced in animals and humans are at best modest

      Delete
    2. ".....but the deliverables so far produced in animals and humans are at best modest" sounds familiar. At least stem cells take Pharma out of the equation, for the most part.

      Delete
    3. http://www.nature.com/nm/journal/vaop/ncurrent/full/nm.4066.html#affil-auth
      Isn't it time we got serious about repair?

      Delete
    4. Phew! I misread MouseDoctor's comment as "Prof is in the pudding" - I was going to ask why no one was pulling him out, rescuing him.

      Delete
    5. My apologies. It took a yer to get published in Nature Medicine.

      Delete
    6. Stem cells takes pharma out of the loop....I would think again on this one as there will be a commercial angle behind all of them

      Delete
  24. I frankly like the way he's Blog!!
    I don't now nothing like this Blog in the field of Health!!

    The idea of ​​an administrator is very interesting; monetizing the blog would be a great bored, why Big Pharma would certainly want to put sponsored links and then the blog lose the essence to demonstrate and discuss all science / research on MS, shamelessly...

    ReplyDelete
  25. Have a small gardening section on the blog - MSers and blog team who like to do gardening. Then only allow gardening related advertising, nothing pharma, MS or medical related.

    ReplyDelete
  26. I think the responses so far say it all - please don't stop doing what you do very well, but if there is a way to lighten your load, that would be good. Your blog is essential reading for anyone who wants intelligent comment on MS related matters.

    Unlike others I welcome your political comment as it is essential to understand what is having an effect on our healthcare system and try to influence it for the good of all. What is the point of developing new treatments, or having existing treatments, which are not accessible to those who would benefit? One case in point is Fampridine. I don't think people realise how at risk systems are, ie the NHS - and therefore that understanding the Junior Doctors' dispute is of vital importance to anyone who does not have the resources to buy private healthcare one day in the future, if it becomes necessary because of the demise of the NHS.

    You must be fairly thick skinned to ignore all the negative comments but please continue to do so! Thank you to all your team for the work you do.

    ReplyDelete
  27. Have you lost your mojo? Simple answer. No.
    I have learnt more about MS in the 2 years I've been reading this site than I did in the 20 plus years I've had the disease.
    Some people are moaning that there is too much about the various DM drugs for RRMS. Those articles aren't relevant to me because I have SPMS - so I simply don't read them. But they are obviously really important to many individuals. Not every single article needs to be relevant to your own particular situation for this to be a really important site.
    I could only think of one improvement - the search function could be more sophisticated.
    I'm really grateful to the people who contribute to the site. Please don't stop doing it.

    ReplyDelete
    Replies
    1. Some people are moaning that there is too much about the various DM drugs for RRMS.

      - This is a viewpoint for some people such as I, who believe that pharma largely hold MS research by the short and curlies. It's not moaning.

      Delete
  28. One of my favourite features of the site is that you put up slides / talks from the big events you speak at - patients are never going to be able to physically attend all of these so great to see what you are discussing and see the slides etc. Love youtube talks as well if they're ever filmed and you can share them here would love that! Thank you so much for making us more informed and allowing us to make the 10-15mins consultation more worthwhile.

    ReplyDelete
    Replies
    1. Anon1111 - you've reminded me of something I meant to include in a comment I made above but forgot to (bloody MS!)

      I would love to be able to easily access the videos you do record during the annual MS days that Barts runs. I know they are lurking somewhere in amongst all other posts, but have not yet succeeded in finding them. Could you look at setting up a YouTube channel for these video recordings? (put a permanent link to it at the top of the blog page)

      Delete
    2. Barts Ms Blog have a Youtube channel we can subscribe to. With videos of MS Research Days and MS Question Time webinars at ACTRIMS-ECTRIMS.
      Yes good idea to have a link on the Barts Blog.
      Here's the link:

      https://www.youtube.com/channel/UCyTAs55E__NlUmDeWs66Jeg/videos?sort=dd&shelf_id=0&view=0


      Delete
    3. If you look at the top of the blog there are a series of buttons the research videos are all there no need to hunt. There may be a few that need the links put in

      Delete
  29. It's by far the best research for people w/ MS, and particularly for those with PPMS. How about a semi-regular feature detailing research/theories that pharma has no incentive to put into a trial? If it has a "label" these could be collected in one area of the site and maybe create a dialogue. It could involve interviews with academic researchers. You could collect ideas from your blog contributors. It might create a dialogue about priorities that could influence the NIH, US MS Society etc. Another idea might be to do a similar "series" with a label (so they can be collected in one search) about "self-help" that MSers could try, focusing on research on exercise, meditation, diet, etc. I know you worry about patients taking supplements and other things based on little evidence, but this section could simply collect research and advice about best practices for healthy living with MS. The kinds of things you wish all your patients would do, plus some new ideas coming out in newly published research.

    ReplyDelete
  30. This is the first blog-post I strongly disagree with and I don't think you have lost your mojo. This blog is a unique source of information for all of us who fight with MS. We are confident that your posts and comments are reliable and definitely based on the latest research. I kindly urge you then not to stop writing.

    The search function would need improvement and each post could have tags so that we can read other relevant posts. This is my only comment on what could be done better.

    If having a blog is too much for you, and I presume it may often be the case, I am sure that an MSer (myself including) can volunteer to be an admin.

    ReplyDelete
  31. You got your mojo working and it's working fine.

    Would be helpful to have tags to sort posts as has been mentioned. You could then de clutter your landing page however as you use the generic blogger I also like the home spun charm which says low budget more interested in content than style.


    Stay as sweet as you are <3

    ReplyDelete
  32. Hey even if you do not need a new mojo!
    https://youtu.be/xY84trzgyI8

    ReplyDelete

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