Wednesday, 3 September 2014

Unrelated Blogger Comments September

If you want to say something unrelated to the threads,this is the spot for you


62 comments:

  1. Team G - Have you ever come across hashimoto encephalitis?

    How can you distinguish it from MS?

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    Replies
    1. Re: "Team G - Have you ever come across hashimoto encephalitis?"

      Yes, I have seen a few cases mainly at grand rounds. They present with encephalopathy (drowsiness, confusion and cognitive impairment) and have changes on EEG (electroencephalogram). This is associated with thyroid autoimmunity. The clinical picture is quite distinct from MS; it is not really an MS mimic.

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    2. Prof G - can one tell from the lesion position on cranial MRI if it's MS or Hashimoto encephalitis?

      Both have oligoclonal bands right?

      Delete
  2. Hey Dr G - great blog! My question is; If MS is not autoimmune, then what is the proposed method of action for the results of the BMT clinical trials? i.e. If MS'ers have an issue dealing with EBV, is the assumption that, for BMT patients, it resolves that underlying issue with the immune system, so it can deal with EBV like a non-MS'er again?

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    1. Re: "If MS is not autoimmune, then what is the proposed method of action for the results of the BMT clinical trials?"

      The simple answer is I don't know. It may be that the B cells that are depleted and come back are very different to the B cells that were there before the BMT. In other words the changes that drive autoimmunity were set-up long ago and have nothing to do with latent EBV infection. The other answer is that BMT may lower the EBV viral load and hence work as an anti-EBV agent; i.e. similar to what may be happening with anti-CD20 therapy.

      All this is speculation.

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  3. Final question from me...! Most patients undergoing HSCT have 6 months to a year of prophylaxis including anti-fungals, anti-virals and antibiotics. If MS is caused by a virus (e.g. EBV) is it conceivable that this extended period of anti-virals contributes to the effect of the treatment, and has that ever been tested?

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    1. Re: "Most patients undergoing HSCT have 6 months to a year of prophylaxis including anti-fungals, anti-virals and antibiotics. If MS is caused by a virus (e.g. EBV) is it conceivable that this extended period of anti-virals contributes to the effect of the treatment, and has that ever been tested?"

      Good point. Not tested to my knowledge, but we have been trying to get funding for an anti-EBV viral trial for sometime with no luck. If you know of anyone who has $3M we can do the trial.

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    2. If patients consented, would you be allowed to prescribe anti-EBV drugs to see whether they had any benefit? Presumably that would provide an indication as to whether it warrants a formal trial. Which drug would you pick as the anti-EBV viral?

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    3. Collectively, I suspect worldwide ms patients and families have 3 million. There are 400 thousand of us in the US. If you were to find a way to solicit tiny 5 or 10 dollar/ euro donations specifically for this from those of us with the most at stake,,you might fund your trial. Kickstarter s one model/ web location for this.

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    4. Not a bad idea. I'm a marketing professional who specialises in integrated creative marketing, which includes utilising Kickstarter (not one I'd use as much more 'arts, focussed) type models for charity. I was thinking about this recently and wondering if I could help. There are quite a few micro-donation platforms that might work for this, much depends on harnessing awareness raising and this blog and others is a good place to start with this.

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    5. This is a quite interesting article on crowd funding medical research.http://www.medicalnewstoday.com/articles/272247.php
      I've had some good projects funded this way, though not in the 3mill bracket but I guess this is potentially possible with a good strategy and storylines behind it.

      Delete
  4. Can MS be a Virus driven autoimmunity?
    EBV infect B cells, so B cells becomes malignant and attacks CNS tissues.
    If we reboot immune system, infected B cells dies, and newly produced B cells are not infected and so are not malignant.
    The same could happens with anti-CD20 therapy...
    More than this, anti-CD20 therapy reduces EBV viral load as well, thus reducing chances for newly B cells to be infected by EBV.
    Do we know EBV infected B cells interaction with CNS tissues in vitro?

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  5. I've seen in a couple of posts on your blog you mention that the induction therapies (Alemtuzumab & BMT) may ultimately prove to be a cure for MS. Both of these treatments have been around and in trials for a number of year now. How long until we know - and based on what you know and the studies so far, what is the likelihood?

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    1. We have said 10-20 years to see if people treated early progress.
      Likelihood...just guesses

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    2. Thanks MouseDoctor. 10-20 years from when the first people had it, or 10-20 years from today? I believe there are several post-HSCT MS patients who are now 10-15 out...

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    3. Whilst there has been the twelve year follow up from the Cambridge cohort and most people are doing well, those that are doing less well were people who showed the poorest response to treatment and/or had more disability at start (this is 2-4 people out of about 85-90)....It is a numbers game the more people with a long term follow up the more confident you can be.

      The Cambridge cohort was only about n=85 and if a neuro puts their neck on the block to say this or that on a small sample size which is also the problem with HSCT then their neck will invariably get cut.

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  6. One more from me... I saw a video of your talk at (I think) ECTRIMS where you mentioned that some of your BMT colleagues may disagree with you re whether alemtuzumab was a better option than HSCT. I'm currently planning to undergo HSCT either late this year or early next (diagnosed RRMS in March). My neurologist is pretty conservative, hadn't heard of HSCT, and is definitely not in the NEDA camp... I haven't got the funds to play neurologist roullette until I randomly land on someone who has solid experience & knowledge of the latest research on HSCT, so wondered if you could point me in the right direction of a good neuroligist in England in private practise with strong knowledge in this area (BMT) and who will be able to effectively manage the follow up when I return to the UK? On a related note, what's your waiting list like currently?! :)

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    Replies
    1. ProfG does not currently do private practise

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    2. Thanks - any idea of a good practising neuro in England who has good knowledge/involvement in HSCT studies? Preferably in the Midlands or London,,,?

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    3. Hope you understand that we can't make recommendations,,but if you do your homework you can find places of places with some experience in this.

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  7. Sorry - I'm on a roll now so one final question! Charcot project... When will results be released, and will that definitely answer the question of whether MS is caused by a virus?

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    Replies
    1. Definitely answer...I doubt it..the study is only a small preliminary study

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  8. Perhaps it is just me but I find the use of the term 'MSer' a tad annoying. What the heck does it mean? How about using the term 'person with ms'' or even pwms for brevity, on a grammatical basis alone 'MSer'. Sorry but as an anthropologist with linguistics semantics as my main research area, I could write a very legitimate paper on why it is a dodgy way of referring to other humans but I'll leave it as just damn insulting and, yup, dehumanising.

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    1. Re: "Perhaps it is just me but I find the use of the term 'MSer' a tad annoying."

      Please see the following paper: http://www.sciencedirect.com/science/article/pii/S221103481300076X#

      You guys chose it; the term was invented and popularised by www.shift.ms

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    2. I think it is just you. We did a poll to find out what term people preferred and MSer came out top so we will continue to use it.
      http://multiple-sclerosis-research.blogspot.co.uk/2013/07/how-to-refer-to-someone-with-ms-mser.html

      Delete

    3. “Once you label me, you negate me” - Soren Kierkegaard

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    4. "It ain't what they call you, it's what you answer to"- W.C. Fields.

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    5. “If you label it this, then it can't be that.” -Tom Wolfe.

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    6. MSer is a "marmite" term you like or dislike it

      Sufferer you don't like,
      patient you are ambivalent to yet it is universally used in clinical journals and most science journals

      and "person with MS" is preferred by most.

      I did another survey via the UK society, problem was this too did not get enough responses.

      Problem is....no one likes labels

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    7. I am MSer who thinks the term is just fine, and as my brain continues its long descent into raisin territory, I appreciate not needing to read "noble human beings tragically afflicted with multiple sclerosis" every time one must mention "MSers".

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  9. How do we protect against excitement with the coming headlines that are sure to be screaming at us from ECTRIMS/ACTRIMS this coming week? I blogged on that very subject at http://multiplesclerosis.net/news/headlines-ms-excitement/

    But still now that so many people with get overly excited each time they hear the word 'cure.' I look forward to joining your hangouts via the web and following along on twitter as my day job allows.

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    1. i normally delete links in posts however have a read of Laura's post because it speaks to the problem with the media and cure of the week.....irresponsible reporting.

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    2. thanks for letting that one go - I'll refrain from links to my blog in the future,but I speak to many of the same issues you do here, except in the liberal arts voice, rather than science. :-) Keep up the good work and find us the hidden gems at ECTRIMS

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  10. It really is a personal thing, as I prefer MSer to PwMS; the latter sounding far too pernickety and PC for me.

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  11. Anon said;
    I just heard about this today, but apparently the (depressingly) small sample trial of GNbAC1 has showed continued stability in progressive MSers. They are also apparently presenting at ACTRIMS-ECTRIMS meeting. PS - They seriously couldn't just call it AECTRIMS or something?

    stuff will get reported next week but we prefer not to put links to company websites

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  12. I've been told that to have Alemtuzumab you have to be relapse free for the 8 weeks previous. Can you tell me the reason for this and if it's the general consensus everywhere? Would it be dangerous to have a relapse in the 8 weeks prior to starting treatment?
    Thanks

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    Replies
    1. Re: "'ve been told that to have Alemtuzumab you have to be relapse free for the 8 weeks previous. Can you tell me the reason for this and if it's the general consensus everywhere? Would it be dangerous to have a relapse in the 8 weeks prior to starting treatment?"

      I am not aware of this. Delaying access to alemtuzumab post relapse may be a hangover from the trial entry criteria. I not sure why this should hold in real-life. The only thing should delay access to treatment is an infection; you need to be clear of infections.

      Delete
  13. You mentioned previously that you believe that Alemtuzamab and Natalizumab are as effective as BMT's in stopping progression and potentially a cure (or long term remission)

    Do you have any staticial data or studys to back this up? BMT's papers I have read imply that BMT has a 70/ 80% success rate over 5 years. Are you saying the above drugs have the same results? And if you are can you provide studies that back this up?

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  14. Can you explain from medical perspective what happens when RRMS turns into SPMS? I have heard that in SPMS you see less/no inflammatioon on MRI as you do in RRMS, what fundmentally is the difference (besides the patients symptoms not remitting)
    Do you believe that any DMT actually stops progression to SPMS? Is there any documented evidence of it?
    Thanks

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  15. Are there any lessons so far for MS, JC virus big pharma from the Ebola and zmapp story? Any lessons to be had on speed and timing if trials?

    Does Ebola just happen to be an easy virus to target?

    Thanks as always for all your time and effort.

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    Replies
    1. Ebola is an easy target as they know which virus causes the disease. The only reason a vaccine hasn't been developed up till now is that is an African disease of low incidence up to now, therefore no profit for pharma. Obviously this perception is now changing, particularly with the widespread frequency of air travel so now perceived as a possible threat to the rest of the world.
      We don't know conclusively that viruses are the cause of MS, though hopefully the Charcot project may enlighten us. If it is EBV and a vaccine against this was widely available and widely used, it would still take 30 years or more to determine if MS incidence has gone down as a result.

      Delete
  16. Anyone know if copaxone x3 times per week is likely to be approved in the UK?

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  17. Can you comment on the incidence of GoodPastures in Alemtuzumab teated patients to date?
    What is the cumulative n?
    When does it occur in the treatment course?
    Have all patients needed transplant?
    Would adding Rituximab at 6 months possibly prevent autoimmune problems with Alemtuzumab?

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  18. Hi Prof Mouse,
    http://www.geneuro.com/en/news.php
    I'm pretty sure you saw this already though

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  19. Do MRI lesions for different types of MS (RRMS, PPMS, ...) look the same?
    Can you tell anything about the age of non-enhancing lesions on MRI?

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  20. Profs.
    Am I wrong or no important news are coming from Actrims/Ectrims this year?

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  21. It depends on your world view if you wqnt treatmemts for progressive ms then the earliesrt new news will be next year. Ibelieve the novaris trial will be comming at the end of the year and will be reported probably at AAN meeting or something like that. News of repair studies may surface. If you want new action then you had Progressive MS alliance. It will never be enough without a cure.

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  22. Professor G, What happend with the Laquinimod progressive clinical study you were involved in? Has it been canceled, or will it start recruitment near term?

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    Replies
    1. Re: "What happend with the Laquinimod progressive clinical study you were involved in?"

      I am under an NDA or non-disclosure agreement. You will hear in due course what the plans are for laquinimod.

      Delete
  23. I found an online resource that might be useful information for the MSers looking to better understand the research on this blog. Rice University is currently running the first of a two part online course through the edX platform. It's free, and it covers a lot of the basics of the immune system including the types of T cells, B cells, cytokines, and many useful topics for MS research.

    Part 1: https://www.edx.org/course/ricex/ricex-bioc372-1x-fundamentals-immunology-1846
    Part 2: https://www.edx.org/course/ricex/ricex-bioc372-2x-fundamentals-immunology-1574

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  24. Any comments on this article about turmeric? I've been taking it for years, though not as an injection so obviously it would not have a similar efficacy. I remember reading a while ago that turmeric is or was in trials for MS.http://www.bbc.co.uk/news/health-29361351

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  25. Is there any more info on this please?

    Oral contraceptive and risk of MS
    16 September 2014

    A study of 4,300 women from 2008 to 2011 found that those who used contraceptive pills that included orethindrone or levonorgestrel had a 57% higher risk of being diagnosed with MS or CIS. Reported at the ACTRIMS/ECTRIMS conference.

    http://www.mstrust.org.uk/research/news/article.jsp?id=6503

    I can't seem to find any more information about it online. Thanks

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    1. I believe it is this . Poster 856

      Progestin content of oral contraceptives and the risk of multiple sclerosis
      AM Langer-Gould, K Hellwig, LH Chen, C Schroeder, F Stancyzk

      Background: The types of progestins used in oral contraceptives have different biological effects on androgen, gluco-and mineral corticoid receptors and vary in their anti-and pro-estrogenic effects. In addition, higher doses of estrogen may have differential effects.
      Objectives: To determine whether the risk of MS varies by the type of progestin or amount of ethinyl
      estradiol contained in combined oral contraceptives (COC).

      Methods: We conducted a population-based nested case-control study for the membership of Kaiser Permanente Southern California (KPSC). We identified females ages 14-48 years with incident MS or clinically isolated syndrome (CIS) between 2008 and 2011. Ten controls per case were matched on age, race/ethnicity and membership characteristics. Oral contraceptive use up to ten years prior to symptom onset/index date was obtained from the complete electronic health record. Data were analyzed using conditional logistic regression adjusted for age, smoking, obesity, live births and abortions.
      Results: We identified 400 women with incident MS/CIS and 3992 matched controls. The most common form of hormonal contraceptive was COCs used by 40% of cases and 31.9% of controls. The majority (70.6%) of women who took COCs, used more than one type. The most common progestins in COCs were norethindrone and levonorgestrel . Most COCs used contained between 0.03 and 0.049mg of ethinyl estradiol. Ever having used any COC in the 10 years prior to symptom onset was associated with an increased risk of MS/CIS (OR 1.44, 95%CI 1.14-1.82, p=0.002). This increased risk was found regardless of the type of progestin or estrogen dose used most recently prior to symptom onset/index date.
      Conclusions: We did not detect a difference in the association between OC use and MS/CIS based on the progestin content or estrogen dose in this contemporary cohort. This may be due to the relatively large number of multiple progestin-type users and the restricted range of estrogen content (i.e. few high or low dose users). Larger studies and meta-analyses with more variation in types of COCs used are needed to confirm these findings.

      You can find this on the http://www.abstractstosubmit.com/msboston2014/eposter/

      http://www.abstractstosubmit.com/msboston2014/eposter/getfile.php?d=807&t=f&

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  26. Thanks Mouse Doctor, this is interesting and I have wondered for the last year if there was a link.

    I was on the combined pill for several years. I stopped taking the pill then had my first MS symptom (vertigo) just over five months later. I am diagnosd with RRMS. There was also a previous study I see conducted by Kaiser Permanente that link this too. It would be good if larger studies could be done.

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  27. At what age (roughly) would you cease to prescribe DMD's for MS? Why?

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    Replies
    1. ProfG will need to answer this but I think disease activity rather than age should be the determining factor

      Delete
  28. Thanks very much for the work maintaining and developing this blog. This article discusses how astronauts lose cognitive skills from isolation and physical inactivity. I thought It might be useful for msers to see this. http://www.theguardian.com/science/2014/oct/05/hallucinations-isolation-astronauts-mental-health-space-missions

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  29. Latitude.....Not just incidence rate but also linked to relapse:

    Seasonal variation of relapse rate in multiple sclerosis is latitude-dependent
    http://onlinelibrary.wiley.com/doi/10.1002/ana.24287/abstract?campaign=wolacceptedarticle

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  30. Oh no - is unrelated Comments for October a casualty of your sabbatical? I don't find it so will post this here --- I hope this recent change of view of MS treatment by NICE will mean new hope for improved care for all of you in the UK. This story makes me smile, a lot!!

    http://www.telegraph.co.uk/health/healthnews/11146298/Thousands-of-people-wrongly-diagnosed-with-Multiple-Sclerosis-experts-warn.html

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    Replies
    1. Sort of... Unrelated blogger comments was posted in october....but I can't find how to change this tab, I can see it but can't edit it

      Delete

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