Unrelated Blogger Comments August

U

Sometimes you want to say something that is unrelated to the threads. This is a spot for you
.
“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

    ReplyDelete

  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.

    ReplyDelete

    Replies





    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?

    ReplyDelete

  4. Return at higher price.

    Yes I suspect so.

    ReplyDelete

  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

    ReplyDelete

  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!!

    ReplyDelete

  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.

    ReplyDelete

  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.

    ReplyDelete

  9. 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.

    ReplyDelete

  10. 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

  11. 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?

    ReplyDelete

  12. BG12 destroying the market? Why not, you can buy fumaric acid over the counter. It could become a health or food supplement.

    ReplyDelete

  13. Could BG12 be the small molecule DMT that eventually destroys the MS market?

    Unlikely…try iv cladribine..any white knights out there?

    ReplyDelete

    Replies





    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).

      Delete

    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



  14. 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?

    ReplyDelete

  15. 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.

    ReplyDelete

  16. 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.

    ReplyDelete

  17. 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

    ReplyDelete

    Replies





    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




  18. 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??

    ReplyDelete

  19. 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

    ReplyDelete

    Replies





    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!

      Delete

    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



  20. 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.

    ReplyDelete

  21. 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.

    ReplyDelete

    Replies





    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




  22. Good luck & a big thank you to Maria & Beki!
    Both of them will be missed

    ReplyDelete

About the author

MouseDoctor

14 comments

  • I find it rather worrying that some research is being carried out and funded yet seems 'way off the mark', if you see what I mean. Some topics just seem to be common sense (I know, I know…) and I think, why spend that valuable research money on this instead of eg trying to find out how to repair the myelin sheath? I do understand the wisdom of 'blue sky' research but even so, could some of these research ££s be put to better use?

  • You will find that much of this fluffy stuff is not speanding research money, it is done with minimal budget.

    The sums of money for a survey or a abit of stainig is miniscule compaired to the cost of undertaking myelin repair studies.

    Unless you have the facilities and also interest then you cannot undertake this type of work because it costs too much.

  • Hi,

    I saw this announcement recently :

    Cytheris SA announced that the European Commission has granted an orphan designation for Cytheris' CYT017, glycosylated recombinant human interleukin-7 (glycosylated r-h-IL7), for the treatment of Progressive Multifocal Leukoencephalopathy (PML).

    What does orphan designation mean, is this good news for those with PML / re-assurance for those of us at risk of PML or is it too early to tell ?

    Thanks

  • Re: "What does orphan designation mean, is this good news for those with PML / re-assurance for those of us at risk of PML or is it too early to tell ?"

    It means that the bar or level of evidence to get a license is lower than that set for non-orphan indications. Orphan status of a disease has been created to incentivise Pharma to develop drugs for these diseases. The orphan drug acts provide pharma with market exclusivity, patent extensions and trump cards to be used to speed-up the approval process of other drugs. The latter only applies to the US.

  • Does Prof G or anyone have a view on supplementing with Green Tea extract as a potentially neuroprotective/anti-oxidant agent? Trials on Polyphenol E are taking place in Louisiana at present. This has particular relevance in light of the research posted earlier in the month re: low oxygen levels and nerve damage. Whilst not yet proven, would this be a sensible, relatively safe, supplement to take alongside Vit D?

  • Re: "Does Prof G or anyone have a view on supplementing with Green Tea extract as a potentially neuroprotective/anti-oxidant agent?"

    Like all of the claims of anti-oxidants. There is a scientific rationale, but no class 1 or 2 evidence. I suggest we wait for the clinical trial data before taking supplements.

    • http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0025456

      This is really interesting on this topic, showing synergistic 'greater than the sum of it's parts' impact of a combination of ECGC and GA in mice. To the non-mouse science expert, the results look really compelling (and the language of those doing the trial is clearly quite excitable!). Do you have any views on this MouseDoc? Isn't this a good candidate for human trial given safety profile or is it not likely to get a human trial as there's no money in it for anyone?! Would it be such a huge leap to add ECGC to GA (or at least start drinking lots of green tea?!).

    • "To the non-mouse science expert, the results look really compelling Do you have any views on this MouseDoc?"

      As you know we don't report too much on the cure a week EAE studies, as it is science fiction and often science fanasty and I can get an ear bashing from my colleagues.

      However you have asked, maybe it is time to do a job on this one and tease fact from make believe, before every one gets too drunk on green tea.

  • Does anyone (Prof G?) have any word on the Biogen EXPLORE phase II trial of BG12 as a combination therapy with GA/IFN? It is marked as completed as of earlier this year on the Clinical Trials website – has anyone any word on how that went or when the results are likely to be released?

  • Re: "Does anyone (Prof G?) have any word on the Biogen EXPLORE phase II trial of BG12 as a combination therapy with GA/IFN? It is marked as completed as of earlier this year on the Clinical Trials website – has anyone any word on how that went or when the results are likely to be released?"

    This is a phase 2 safety and tolerability study; it will not provide efficacy results. Not sure when the trial will be completed.

  • In terms of induction therapy – is there a problem here of jumping too soon? i.e. Once licensed, an MSers takes Alemtuzumab. Then phase 3 data for Ocrelizumab comes out in a few years and knocks Alem out of the park – but those who have taken Alem presumably can't take Ocr as well (I assume you can't take multiple, different induction therapies?). Or a year or two after that, Daclizumab is shown to be more effective than both in terms of disability and it believed to be the most likely to stop SPMS and those who have taken Alem or Ocr are stuck as they can't take that now… and so on… Where does the balance lie between taking effective action early and waiting to see what the next closest drug to approval might bring?

    • You have to live in the here and now; waiting for something that is 2, 3 or 5 years down the line is not an option!

    • I totally agree with this… but the challenge is persuading PCTs to prescribe, isn't it?
      I would very happily go onto Campath or Tysabri… but I can't get access to such drugs.
      My neuro says I have to fail on Avonex first.
      Is there a way around this?

By MouseDoctor

Translate

Categories

Recent Posts

Recent Comments

Archives