Unrelated Blogger Comments 2 – October

Sometimes you what to say something that is unrelated to the threads. This is a spot for You. Previous comments can be got at on the posts on the right of the main page.

Prof G has changed the comments posts so they do not pop-up but allows replies. Let us know what you prefer

P.S. Check out MouseDoc & The Not so Great North Run

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  • Having read recent commnts I feel like this blog started to attract some loose canons again aka trolls. you people are wasting my time.. you disrespect not only the owners of this blog but also me a fellow MSer…. get your own blog if you do ot like this one.
    /Swedish Sara

  • Totally agreeSara. It may be time for pre-moderation of comments to be reintroduced so the site doesn't get clogged up.
    Best wishes

  • Yes the trolls have put me off this blog for a week now! Its getting annoying even with my patience for sad losers this trolling is insane. Perhaps it's a wave that will ebb as happened in the past.

  • I've followed this blog since its birth. I'm interested in MS research from the mainstream researchers. CCSVI is of no interest to me. I saw it destroy another website I used to follow (thisisms). Eventually, those not interested in CCSVI lost interest. I'm beginning to loose interest in this website. Why can' we be CCSVI free – there are plenty of other websites which cover it. We can be honest and say upfront that we will not cover issues relating to CCSVI – and direct those to other site. If I was an Arsenal fan I woudln't expect Spurs fans to be psoted on an Arsenal blog. By continuing to cover CCSVI you will see thsoe interested in mainstream science turning away. If CCSVI is effective than this will be seen in the coming years. I don't see why we need to cvoer it on this site.

    • Lets see what G has to say. The CCSVI survey has been intersting and indicates that the readers who are bothered to participate are probaly like minded with you I'll save this for last saturday of the month.

  • Is there a relationship between cholesterol in the diet or blood levels of cholesterol and the potential for remyelination?

  • Mouse,

    There have been quite a few responses where it has been noted that neuroprotective trials are underway. Can you say any more on this. Are these human trials? Are they Team G trials or those of other research groups.
    I think I recall a current trial which is being tested on the optic nerve. If this is successful, cn the jump be made to saying that "it is effective on the optic nerve so will be effective on other parts of the CNS?


    PS I saw on Dr Coles website that they are looking to start a trial:

    Progressive multiple sclerosis – We are committed to research on people with multiple sclerosis. We are very keen to start a trial of a new drug, following the exciting experimental work of Prof Robin Franklin in Cambridge. See here. This trial has the support of the MS Society.We are currently having difficulty accessing the necessary drugs. We hope to overcome this hurdle and will post details of trial here when we can

    • Can you say any more on this. NOT REALLY..UNTIL THEY GO PUBLIC
      Are these human trials? YES
      Are they Team G trials YES
      or those of other research groups YES
      I think I recall a current trial on the optic nerve THERE'S MORE THAN 1 If this is successful can we jump. THAT,S THE HOPE BUT WE HAVE TO FIND A WAY OF FINDING ACTIVE DRUGS QUICKER


    • Mouse,

      Thanks for the response. I had assumed that treatments promoting re-myelination would also be regarded as neuro-protective (but I might be wrong).

      PS I don't refer to you as Mousedoctor, as you don't actually get the mice better!

    • Remyelination is indeed a way of neuroprotecting but it is a repair where as many neuroprotectants are not repair.

      You obviously have not seen the mices, we have a lot more success than Prof G and can probabbly cure them of their disease if we start early enough. As to neuroprotectants we have them coming out of our ears, some better than others.

  • Mouse,

    Where's Prof G? You did all the work during ECTRIMS and are still bearing the load. I see that the AAN have a conference this week in Vegas. Hoping Prof G isn't adding gambling to his champagne vice!

    • Yesterday & Today should have been in Switizerland but spent all day in London being fogged in and tomorrow in Norway, his GPS must be failing

  • An Italian court found some scientists guilty of manslaughter for failing to predict an earthquake in 2009. Reminded me of the people who rail against doctors for their inability to cure MS.
    I wonder what will happen first – MS cure or earthquake prediction. Both seem very far-fetched

  • Do you guys have anything to do with the International Progressive MS Collaborative? Is this an action plan that will work?

  • MouseDoctor – do you have any thoughts on the work of Professor Franklin and the forthcoming trial (which presumably, from the info online, is a therapy targetted at RXR-Gamma). The MS society puts their positive spin on it here: http://www.mssociety.org.uk/ms-news/2010/12/myelin-repair-reality-says-ms-society-research but wondered what your views were – is this really such a ground-breaking therapeutic avenue or are there flaws in the work so far?

  • Lets hope that in they go ahead that drug promoted remyelination, but not sure what the trial. As with any drug there could be potential side effect. RXR is expressed in other cells beside oligodendrocytes. we will have to hear till we hear tiral design. will it be on top of immunosuppressive?

  • "Lets hope that in they go ahead that drug promoted remyelination, but not sure what the trial."

    Sorry MD but I don't understand that sentence? Typos or is my brain just not working well this morning?

    • Sorry sentance not finished. I am not sure what the intended trial design would be be. Therefore it is hard to make any comment.

  • Prof G – You recently listed one of the highlights of ECTRIMS as being an interesting study on Lipoic Acid (presmably alpha?) as a neuroprotective possibility. Can you tell us more? All I can find online is an old 2005 trial from Oregon which showed APA might help MS via reducing MMP-9. I can also see Oregan have a trial underway with SPMS. I assume, however, to make the news at ECTRIMS there must have been a more recent study shared? Can you give us some more info?

  • Prof G has changed the comments posts so they do not pop-up but allows replies.

    That the posts allow replies is much nicer!!

  • Thank you for this blog!

    As a newly-diagnosed ‘MSer’ (February 2012) I’ve moved through the denial stage (still feeling some anger!) but am now in the acceptance phase, so I just want to find somewhere calm and genuinely informed to be able to quietly read and inwardly digest details about MS, in order that I can begin to understand a little about the ‘thing’ I will spend the rest of my life with. With the knowledge that the internet allows pretty much anything to be posted by anyone, I have gingerly had a peek at a few websites (including the MS Society’s forum) and have pretty swiftly escaped, vowing to never return!

    I spotted this blog last week and whilst there is a heck of a lot of information waaaaaaaaay over my head, I really hoped it would be somewhere I could visit and allow my loved-ones to visit for genuine information, not hyperbole and wild ranting, specifically some of the single-interest spam-type comments. Whilst in any academic discipline one should encourage the exchange of opinions, my thoughts are that this blog’s owners / administrators do need to moderate comments because otherwise the value of what they post might be lost. I fully appreciate that an awful lot of people have spent a great many years being subjected to the whims of MS, and that will obviously breed fear, anger and desperation, but as a newbie, too much ranting is very scary and off-putting when I am desperately seeking calmness and understanding.

    Once again, thanks for this blog and the annual research day (which my boyfriend, parents and I will be attending), which go some way to making a big and scary thing a bit more accessible to someone who is not looking forward to having to become a ‘keen amateur’ in neurology, when she’d much rather be spending her time reading about things that really interest her!

    • Welcome to the blog Posy and don't be put off by a few rogue posters.
      If you have any questions, please post and we'll try to answer as best and as soon as we can.
      This blog is for people like you who want to learn more about MS and are trying to make sense of things.
      Looking forward to meeting you at the research day.
      Best wishes

  • Could you please do another posting about PML and Tysabri and current data…it's much easier to access.from this blog.
    Also if you are JC-virus negative and then convert to positive…where do you start counting? From when you started on natalizumab or from when you converted? Because it would make a difference making a decision weather to continue or not a least for me..
    /Swedish Sara

  • Hi all , sry 4 my bad spelling but i am not from us or eng so plz can u tell me or give me link where i can c wich drugs r the best for ms in long time coz i saw that 1st line drugs dont reduce distability progress in a long run compared with other msers . Can u tell me something about it , thnx ! Ps u have best blog ever thnx 4 that

  • Dear Sasha
    Don't worry about spelling, mine is awful. I believe I understand what you are asking which is the main thing.

    I find programmes like Google translate can get me close to what I think I want to say when I translate into lagnuages I know a little.

    If you look through the blog there are debates about whether the first lines drugs offer benefit in the long term. There may be some. Search on beta interferon. As to the other drugs there is not really sufficient history on most of them to make this judgement. There was some 5 year data on alemtuzumab and some nice anecdote. Tysabri there are some MSers who have been on it for many years, I don't know what happens if you stay on it there are a few reports of what can happen if you stop….maybe Prof G will comment on this.

    As to Aubagio, and Gilenya we do not think that we have the data I am afraid.

  • Posy, I found the Dummies guide pretty helpful, although obviously it can't be current with new research knowledge. Also, I'd say give the MS Society Forum esp Everyday Living, another go – there are several wise and calm posters on there, who hav elived with MS for decades. Best wishes…

    • Thanks for that post Anonymous: I may well have another look in the future. I think the thing is, I feel well now the episode has ended, aside tiredness (which in hindsight I’d had for around 18 months, but put it down to work-stress and running around like a blue-ars*d fly!) and a bit of clumsiness and forgetfulness (but I’ve always been a bit clumsy and forgetful!) so I don’t feel that MS is affecting my every day life and (to be honest) I don’t want to play mind-games with myself by reading too much about what living with MS is like for those who are really affected by it.

      I have a friend at work who has MS and suspected I had it when I was moaning in the office that I had numbness in my hands, so she has given me a bit of advice. Additionally, we had a close family friend when I was growing up who had MS: we think she had RRMS initially, then everything seemed to go downhill quite quickly and she did die early. Oddly enough, that knowledge hasn’t caused me any great distress in relation to my diagnosis, because I’m quite a fatalistic person, so in some ways I’m struggling with how I’m meant to feel about having MS, given I’m not really a planner and have always been prepared for a big red bus to hit me! I actually described how I feel about having MS by comparing it to Inspector Clouseau knowing that Cato would attack him sometime, somewhere, but he never knew where, when or how! I just want to crack on with life, following the same dreams, till maybe something happens to slow me down.

      I just feel that I want to be informed and really know what my options are, and I mean that free from any restrictions of NHS funding and NICE: I’m not naturally a pill-popper, but if taking a pill now when I am basically symptom-free would mean that the speed of progression of the MS would be slowed, I’d like those pills now. Equally, I know that in the US pills are handed out for pretty much anything and everything because there is a financial incentive for prescriptions rather than a clinical reason. I am prepared for pretty much anything, but what I don’t want is to suddenly find out at 60 (I’m 38) that had I had access to a pill now I might not be suffering walking problems, for example.

      I have great sympathy for Prof G, his team and all the medical geniuses around the world banging their heads against the MS wall because the weight of expectation must be immense: all of us desperate people pleading with them for answers and cures because we know that EVENTUALLY science will give an answer; it’s just that we don’t have very much time to give them. I’ve moved home since my diagnosis so will be attending my first appointment at St Barts in November and have already decided to offer myself for research, if I meet any of the criteria for the studies. Whilst I cannot help myself, I can help the people hoping to help me and all of us, so being someone who dislikes just sitting around and waiting for things to happen to me, I want to get involved however I can.

  • I see that at ECTRIMS it was suggested that MS is less common in those people with cytomegalovirus exposure. This would suggest that it in some it may prevent the development of MS. Is it a concern in the Charcot project that by preventing the action of a virus linked to MS, it might have knock on effects in other diseases.

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