Unrelated Blogger Comments August

Sometimes you want to say something that is unrelated to the threads. This is a spot for you
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"If you are a MSer at the Royal London Hospital please sign-up for our cognition study!"

We may be slow at answering this Month 


35 comments:

  1. Alemtuzumab will no longer be sold in the UK

    http://www.nelm.nhs.uk/en/NeLM-Area/News/2012---August/10/Discontinuation-of-licensed-supplies-of-alemtuzumab-Mabcampath/

    I guess it will return at a much higher price when it is licensed for MS
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  2. I think the new posting format is better because I couldn't read the code numbers sometimes, now it's quicker.

    If people want to spam, they will regardless let's hope they discover some other blog to do so.

    Also, could someone please tell the other researchers from Team G to increase the typing size of their articles? Thanks.
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    1. Maybe time to turn the codes back on?

      There is alot of useless traffic about viagra, penile enlargement and windows operating system spam. It may be it is autoamatically generated on key words. May an experiment is in order.
      Delete
  3. Have increased font size of past recent posts.

    Code numbers?
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  4. Return at higher price.

    Yes I suspect so.
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  5. I have been trying to remotely assess comments from Kindle 3G that is why some of the comment access changed. It was a hopeless case
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  6. Oh MouseDoc:-) No code numbers just the stuff you had to type (letters+numbers) so that your post got through - now, how do you name that?

    Anyway, thanks for increasing the font, very helpful!!
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  7. Another not Campath-related:-) question but perhaps some of the docs has time to answer - can you tell how much a blood test for Aquaporin-4 would cost me if I were to cover for it privately - just roughly need to know if I need to sell my car or something ;-) thanks.
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  8. Can a Zoster or a Herpes encephalitis easily be distinguished from MS?
    Both are rarer than MS. And I wonder if a certain percentage of MSers have a Herpes or Zoster encephalitis.
    Thanks.
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  9. This article will cheer up Prof G:

    http://www.theglobeandmail.com/life/health-and-fitness/massive-study-disputes-zamboni-theory-of-multiple-sclerosis/article590119/
    ReplyDelete
  10. This article will cheer up Prof G

    Not sure why it would cheer us up, we have no real axe to grind with the Zamboni hypothesis except that we want definative proof the CCSVI hypothesis has legs, which is increasingly unlikely. We are saddened by the false hope and resource and human costs that this so called "eccentric and maverick" (by an A from Cambridge) idea has appeared to consume.

    That MS suceptibility genes are largely immune related is not new we have known about this for years...therefore it is not news. The generation of this information has likewise not smelt of roses along its history.

    However if I said I dont think that progressive MS is not anything to do with autoimmunity this could be true and this could still require immune related genes in its trigger. The question is can the vascular protagonists build the fact into their ideas, with something that is not a shaggy dog hypothesis. This has always been a problem with the CCSVI story that it brushes many on the known facts about MS aside.
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  11. This one - in my view - is way more interesting:

    http://www.technologyreview.com/news/428956/new-cells-for-als-patients/
    ReplyDelete
  12. Re: "Can a Zoster or a Herpes encephalitis easily be distinguished from MS?"

    Yes, zoster causes an encephalitis and is sudden in onset. Very different to MS.
    ReplyDelete
  13. From Prof G's twitter feed on 15 November 2010

    -a successful MS prevention strategy will destroy the MS DMT market! Whoopee bring it on

    -A small molecule DMTs coming off patent may do it sooner or maybe not as they are not that effective. A cure is what we want!

    Could BG12 be the small molecule DMT that eventually destroys the MS market?
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  14. BG12 destroying the market? Why not, you can buy fumaric acid over the counter. It could become a health or food supplement.
    ReplyDelete
  15. Could BG12 be the small molecule DMT that eventually destroys the MS market?

    Unlikely...try iv cladribine..any white knights out there?
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    1. What would be required of a white knight in this context? Funding or time (or both?). I'm willing but whether I'm able is a different matter... Surely an IV Cladribine trial would be a prime fund raising opp given it is a generic drug that could be as effective as the many (very expensive) DMTs. Wouldnt the various MS charities consider this?


      As an aside, we're any results ever gathered from the Oracle trial of Clad for CIS or was the plug pulled before they could be obtained? Was there any informal sense of how effective it had been? Prof G?
      Delete
    2. In this context...
      A consultant neurologists with an iron back with the time and energy to co-ordinate a safety trial and organise the funding for the trial (could be MS Charities or Government) and presumably subsequent licencing. (This is not Prof G).
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    3. How can it be that there isn't a neuro interested in taking this on? A drug with comparable effectiveness to the newer induction agents, potentially less side effects and no patent. Surely that's a very significant potential drug just sat gathering dust or being used in the odd off-label use? If its safety could be proved, then the neuro responsible would receive huge plaudits. Back to my earlier question - does anyone know what happened to the Oracle trial for this drug? Were any results gathered?
      Delete
    4. Re: "Oracle" - yes the data is being collected and will be presented. I suspect next year sometime.
      Delete
  16. Interesting that Oracle was CIS. If the results are promising, that's taking early, aggressive to a new level (i.e. induction treatment at CIS stage). Is off label IV clad a reasonable strategy for new CISers to consider with their neuros? If it can be shown to significantly reduce risk of conversion to MS then it could be extremely important.

    Who is responsible for Oracle? Presumably not Merck given they've abandoned oral Clad?
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  17. Oral Cladribine in Early Multiple Sclerosis (MS) (ORACLE MS)NCT00725985 is Merck Serono trial July 2011 (Final data collection date for primary outcome measure Jul 2011) n = 617. Endpoint time to MS conversion

    Oral Cladribine binned by EMS23 June 2011.....What's the interest from EMS in putting resource into study to tell us the result?

    If Movecto was on the agenda still I suspect it would have been all over ECTRIMS this year if it had worked......now I bet it will make as much of a splash as pin dropping in to a big lake.

    IV clad needs safety study to be done, remember it did not get FDA/European approval because of potential cancer signature.
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  18. Do you expect we'll get the results at ECTRIMS? Are we certain this data is being collated? I can't see why EMS would do this given Oral Clad has been binned? Safety aside, it will be interesting to see the results. I'm certainly considering IV Clad off-label - cancer risk or not - now Alem is off the agenda for the time being.
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  19. Do you expect we'll get the results at ECTRIMS? ...No.....Not this year. If you look at the ECTRIMS website you can see titles of most of the presentations

    Are we certain this data is being collated?....No...But I don't know..should be

    I can't see why EMS would do this given Oral Clad has been binned? ...It will not be high on the agenda I'm sure but will come out at some stage..Prof G thought next year
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    1. EMS has not binned it; they are simply not developing it further. I suspect if someone came along with the right price they may sell the oral cladribine portfolio. The buyer would have to do another trial to get safety data; by the time there is sufficient safety data the patent would have expired and there would be no window to may their money back. This is an example why patents and incentives are so important to get pharma to invest and develop drugs for MS.
      Delete
  20. Thanks. On a different topic - what's the most anticipated 'release' at ECTRIMS? Are there any really exciting trial result or developments expected to be revealed for the first time??
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  21. I think there will be the Pharam Jamboree, but you know most of what they are serving up

    Here is the preliminary programme

    http://www.congrex.ch/fileadmin/files/2012/ectrims2012/ebooks/ECTRIMS_2012_Preliminary_Programme/index.html

    Prof G will no doubt we sending updates from Lyon
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    1. I have no doubt that Prof G and his colleagues will be eating out at Michelin starred restaurants in Lyon care of Big Pharma. Disgraceful as most of us are facing benefit cuts!
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    2. This is a rude and unnecessary comment. And you don't even have the guts to put your name to the post.
      I hope Prof G does have a lovely meal in Lyon. Why go to Lyon otherwise?
      But the deeper point is this: Prof G and his team don't have to run this blog. They don't have to be engaged and passionate as they clearly are. So slagging them off on it is not only counter productive (they might just stop posting) but it really is pathetic. Yes, you (I) have a crap disease. Yes, it makes you (me) feel bad. But this isn't Prof G's fault. So lay off the insults.
      Delete
    3. Thanks Iain O. Well said. More sensitive people would see a comment like that and wonder why we bother. Fortunately we aren't. We totally understand MSers frustration but slagging off people who really do care is really not the way to go. Team G actually look forward to the day when MS is cured and we put ourselves out of a job.
      Have no worries, we won't stop posting!
      Delete
    4. I agree entirely. This blog is an invaluable source of info and commentary and the time Prof G and MouseDoctor take to reply to questions and comments is incredible and generous. As a newly diagnosed MSer, I'd be completely lost without this site.
      Delete
  22. Amen Iain. You said it right.

    Anon 11:15 pls (out of respect to us) control your emotions.
    I know its tough with mood swings in MS - but do count to 10 before you post.
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  23. Dear Anon 11.15
    Saw Prof G at lunch time and mentioned your comment, it reminded him to think about food in France as he thinks Lyon will have some nice places to eat..after all it will be french food.
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    1. Prof G - go to one of the city's bouchons if you get the chance. They serve things like donkey nose and lots and lots of offal but the taste is a lot better than the sound.

      Ground fish dumplings at Le Poelon d'Or is a nice place to start. 29 rue des Remparts d'Ainay (+33 (0)4 78 42 43 42).

      Trust me - it's worth it.
      Delete
  24. Good luck & a big thank you to Maria & Beki!
    Both of them will be missed
    ReplyDelete

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