Friday, 31 August 2012

Unrelated Blogger Comments August

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:

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

14 comments:

  1. 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?

    ReplyDelete
  2. 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.

    ReplyDelete
  3. Aha, thanks for that.

    ReplyDelete
  4. 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

    ReplyDelete
  5. 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.

    ReplyDelete
  6. 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?

    ReplyDelete
  7. 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.

    ReplyDelete
    Replies
    1. 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?!).

      Delete
    2. "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.

      Delete
  8. 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?

    ReplyDelete
  9. 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.

    ReplyDelete
  10. 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?

    ReplyDelete
    Replies
    1. 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!

      Delete
    2. 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?

      Delete

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