Friday, 20 July 2012

Unrelated Blogger Comments July

Unrelated BLOGGER Comments

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

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Tony Fonda said...
How about that ! An immunosuppressant with a surprising side effect:

Has it been tested on MSers yet?
Gavin Giovannoni said...
Re: "How about that ! An immunosuppressant with a surprising side effect:"


Not sure of the results; I assume they were not very positive otherwise we would have heard by now.
Tony Fonda said...
I left a message to Dr. Khoury and will come back to you if/when she reaches out.
Iain O said...
People keep on saying that eating cheese is bad for those of us with MS.
Yet we keep on testing on mice.
Mice like cheese.
Just saying....
These things keep me up at night.
MouseDoctor2 said...
Actually, mice don't really like cheese, they only eat it because they're too polite to refuse.
Anonymous said...
What do you think about this new perspective of the phisiopathology of the MS disease?

(i cannot access to the entire article)
MouseDoctor said...
What do you think about this new perspective of the phisiopathology of the MS disease?

The study from 2010 I'll have a look
Anonymous said...
In Nov there was a discussion here about a paralysed hand-cyclist who had a sudden miraculous recovery
(in the comments after )

Now there are doubts about whether she was paralysed at all when she won the Paralympic medals

if something is too good to be true ...
MouseDoctor said...
I can not comment on the case in point

but lets hope there are not too many cheats in the 2012 olympic and paralympic games....we are the Olympic Hospital.
Gavin Giovannoni said...
Re: "if something is too good to be true ..."

She may not have been a cheat. There is a condition called a somatization disorder; you truly believe you have a problem when you don't.
Frà said...
Good morning,
I couldn't find much in the blog about this issue(maybe I'm not so good in searching), but I would like to know how happens that someone JC virus seropositive, become seronegative during Natalizumab therapy (see 22 May 2012 post,"Research: JC Virus seropositivity in MSers"). I suppose it's not related to Natalizumab specifically, can you give me some information about that, and if possible some research link?
Thank You
Gavin Giovannoni said...
Re: "I would like to know how happens that someone JC virus seropositive, become seronegative during Natalizumab therapy."

The most common reason is analytical, i.e. the first test is a false positive and the second test is correct. Or the first test is correct and the second test is a false negative. These issues relate to the so called positive and negative predictive value of the assay and are related to the sensitivity and specificity of the assay. These flip-flop results typically occur at the lower end of the assay, but can occur is some assays when the titres or levels of antibody are very high.

Biologically, a positive titre can disappear with immune senescence. As the immune system ages it loses its memory and the antibodies to a virus disappear. This is unlikely to occur with JCV as we believe that the virus persists in the body and therefore it continues to stimulate the immune system which overcomes this failing memory problem. I say believe as we don't know if JCV persistence occurs in everyone; it is feasible that some people clear the virus.
Francesco said...
I see. As a matter of fact, I couldn't find any statistic about numbers of people getting virus clear. Hope here in Italy hospital get this new STRATIFY DxSelect by Biogen, just to be sure of the test.
Thanks for the prompt reply.


  1. Directed to this item by another person with interests - I think the byline shameful is appropriate.

  2. in another publication on the blog, we talk about a study that people with low vitamin D is more likely to have veb. therefore, because msers always have lower vitamin D are more susceptible to EBV. This could go? I would also like to explain the epidemics of multiple sclerosis with ebv, if ebv is spread throughout the world for a long time. thank you very much, alvaro

  3. what do you think about this?

  4. Don't know if anyone on Team G has seen this paper yet: If so, I'd be interested in knowing what you think about it. Thanks!

  5. what do you think about this?

    Prof Amor is a member of team G so we obviously think it's a great piece of work which should spark a fundamental reassessment of what is going on in MS. Hopefully our American fundamnetalist immunological cousins will read and take note! MouseDoctor will be posting more on this tonight.

  6. Don't know if anyone on Team G has seen this paper yet: If so, I'd be interested in knowing what you think about it. Thanks!

    Thanks Maria, we will be going to town on this one too!

  7. Re: "people with low vitamin D are more likely to have EBV."

    This is not established and is unlikely; the question we are asking is are you more likely to get infectious mono of glandular fever if you are vD deficient? If yes, that would be very interesting.

  8. Could please someone from Team G interpret/comment on the Prof Pender thesis "CD8+ T-Cell Deficiency, Epstein-Barr Virus Infection, Vitamin D Deficiency, and Steps to Autoimmunity: A Unifying Hypothesis"?

    Am I right to assume that Prof Pender sees EBV at the core of all autoimmune diseases while the genes determine which organ EBV attacks?


  9. Maybe you could give us some information on Glycyrrhizin and its effect on EBV?

    I use licorice (the really strong and pure!) after cortison infusions to reduce the cortison levels gradually (instead of taking cortison pills).

    I know that you should be carefull with licorice. So everyone here: don't try this at home! xD

    But I read some interesting things about Glycyrrhizin and its effects on Viruses like EBV, VZV and some others.


  10. Re: "Maybe you could give us some information on Glycyrrhizin and its effect on EBV?"

    There are two publications showing that Glycyrrhizin interferes with EBV biology. Whether this works in the body is unknown. Please be careful too much licorice is not good for you; it contains substances that mimic a class of steroids called the mineralocorticoids and results in salt retention and wasting of potassium.

    1: Lin et al. Inhibitory effects of some derivatives of glycyrrhizic acid against Epstein-Barr virus infection: structure-activity relationships. Antiviral Res. 2008 Jul;79(1):6-11.

    2: Lin JC. Mechanism of action of glycyrrhizic acid in inhibition of Epstein-Barr virus replication in vitro. Antiviral Res. 2003 Jun;59(1):41-7.

  11. Prof G,

    Moving on from licorice to curcumin...

    What are your thoughts on this? Do you think a daily supplement of Curcumin can help?

    1. It seems to have some impact on EBV

    2. It seems to have some impact on EBV transformed B cells

    3. It inhibits EAE

    4. Curcumin inhibits Th1 cytokine profile in CD4+ T cells

    5. It is claimed it inhibits neuroinflammation through multiple mechanisms in MS

  12. Re: "Moving on from licorice to curcumin... What are your thoughts on this? Do you think a daily supplement of Curcumin can help?"

    What we need is a an oral curcumin analogue, that is novel, that can then be tested in humans with the aim of taking it into MSers. This is a drug discovery programme; something that may interest Pharma. I am not convinced of the science yet; it is a bit thin and needs to be replicated and expanded upon.

  13. Anonymous said...

    Alvaro said
    If cd8 tcell defficiency is important in ms, the LDN therapy could be interesting?
    thank you very much, alvaro

  14. I do not understand the link between low dose Naltrexone and CD8 deficiency.

    There is no evidence of CD8 deficiency indeed lesions have more CD8s than CD4s

  15. the author Pender M have a lot of studies about cd8 defficiency in ms. other authors have the same conclusion. naltrexone in low dosage have the function of increse cd8 (regulation cd4/cd8). it would be interesting to speak in your blog. a lot of people use LDN with excellent results.thank you very much.

  16. OK now I see where you are coming from. There are some studies by the Pender group reporting a small reduction in CD8 cells in the blood.

    Other people have looked some report a difference others don't
    but is the reduction in the blood because there are more in the brain?

    The Pender story suggests there may be a deficit in CD8 cells to kill EBV infected cells.

    Now to LDN. There are some reports of anti-symptomatic effects, which are unlikely to be related to immune effects and more likely to due to nervous effects. The evidence that LDN has disease modyfying effects ,where it would perhaps impact on immunology is scant because of the lack of trial data. So we are more driven by anecdote rather than hard evidence.

    What does LDN do to T cell responses? Well this depends on which report you read and for how long the treatment is. From a quick scan of literature of which most is in animals it would imply an increase in the short term and with chronic use a decrease.

    Therefore I could build a story in many different ways, which is not going to be that productive.

    It would be great if there was more hard evidence on what value LDN really has as I know it is of interest to MSers.

  17. thank you very much for your reply, you are very kind. regarding LDN, I have asked this because I know several patients in my country that their neurologists have been told to continue to consume LDN because of its improvement and no new lesions on MRI after several years. these neurologists say, "I can not fight against the evidence." obviously off-label. I understand that scientifically is irrelevant, but when a patient does not respond to medication and the disease progresses, we have to make decisions. a silent movement is occurring among patients on the Internet about LDN, and neurologists should consider it. regards, Alvaro.

  18. info and conferences:

    article about crohn:

  19. Dear Anon 21
    Just because a drug works in Crohns disease does not mean it will work in MS (e.g anti-TNF does not follow, tysabri does)

    Why not lobby your MS Societies to do a real study and get solid data that can advise one way or another.

    Maybe get rmforall to do this so that there is an alternative passtime to plugging the downside of aspartate:-)

  20. thank you very much mouse doctor, but i dont understand the phrase:

    Maybe get rm for all to do this so that there is an alternative passtime to plugging the downside of aspartate.

    which occurs with aspartate?

    i know that crhon is different to ms, i wanted him to know LDN work in autoinmune diseases.

    I wish it was easy to convince the associations of multiple sclerosis, for them only big pharma studies are valid.

    other effects of ldn:

    thank you doctor, alvaro

  21. Sorry. This was a light hearted comment related to rmforall i.e. Rich

    We have been having words see the comments on post

    rmforall is a lobbyist who has been endlessly posting on a book the evils on aspartame (artifical sweetner), methanol and formaldehyde I have asked him repeatedly to stop

    Check out the Aspartame_controversy

    MS socities do sometimes fund studies

  22. Re: "silent movement is occurring among patients on the Internet about LDN, and neurologists should consider it."

    Without class 1 & 2 evidence (i.e. randomised controlled trials) we can't consider it. We have to practice evidence-based medicine. If we don't we would be liable to the charge of quackery.

  23. thank very much for your time. dr gavin i understand you perfectly. mouse doctor please i am not as rmforall!!!!I only ask the ms experts to give me your opinion.regards

  24. Dear Anon 2.14
    I was not suggesting that you are like rm forall.

    My comments were directed to rm for all.

  25. Hi ProfG and MouseDoctor,

    is it possible to publish a small article about MRI presentation of different MS variants and some other diseases?
    E.g. PPMS, SPMS, PML, Neuroborreliosis....

    Or can you provide a good source for such MRI pics?


  26. MouseDoctor, good to see you with all your family in that convention photo...

  27. "Is it possible publish a small article about MRI of PPMS, SPMS, PML".

    Please remember that progressive MS is based on clinical profiling not MRI. You can't look at MRI and say this person has this course, that course, although there may be clues of clinical problems.

    There are pictures of PML on this blog site and others can be found on the web.

  28. rmforral wrote

    "High time indeed for the blog moderators to invite [RM's favourite spam fact the only thing that RM prattles on about] to present referenced up-to-date review of his [RM's favourite and only subject] for the initial major co-factor for multiple sclerosis, in the true tradition of civil, unfettered scientific debate based on reason and shared public evidence: search [RM's ONLY REASON FOR POSTING PLUG]"

    We are not interested in your lobbying but if your HERO was to write a research paper in the peer reviewed press and not produce a "for-profit book" then we may make a comment on it.

    We seldom comment of reviews because this is the lazy type of armchair sceince that I am not a big fan of.

    I understand your hero is retired so could spend this spare time doing some this to support his theory rather than selling books.

    Prof G likes a debate but I am afraid the blog is not about providing soap boxes. If your mate wants to come to London there is a place on Hyde Park corner on Sunday mornings where he can spout as much as he likes. However that place in not here.

    I have however written to your mate to ask him to ask you stop.

    Maybe we should ask VV for an opinion on thee work?

  29. WC Monte says he has never met Rmforall and has no control on what he a loose cannon.

    Time he was fired! :-)

  30. Prof G and MouseDoctor

    I hope I can explain the topic right as english isn't my mother tongue.

    Is MS a primary or a secondary disease? I haven't found anthing about this yet.
    E.g. maybe some parasite is crawling inside you keeping the immunesystem busy and causing MS as a "sideeffect".

    I strongly belief in a viral cause but haven't found anything about parsites and MS(if you consider a virus not to be a parasite xD).

    Mabe something like Schistosomiasis (bilharziosis) or something similar.


  31. about parasites you can read about Sarcocystis and Protomyxozoa in ms. also you can read about malaria and ms, for example Sardinia epidemic or quinine effects in ms. only hipothesys. regards, alvaro

  32. Not sure that Malaria and MS is a good link as the epidemeology of malaria is very different to MS. In area were you get MS is not where you get MS or fluke worm infections

    so schistosomiasis has a differnt epidemeology. However there are trials on hookworms and whipworms as a way of deviating the immune response and so protecting against MS.

    Over the years chlamydia has been suggests as a link and there are many ways that a parasite =bacteria and virus could trigger autoimmuntiy etc.

  33. B cell research on the NMSS website - interesting?

  34. endemic distribution of malaria is inverse to multiple sclerosis epidemiology. malaria protects against ms. papers of Sotgiu and Kissler are interesting. because of this, it would be interesting to study the influence of plasmodia protozoals in ms. regards, alvaro.

  35. B cell research on the NMSS website - interesting?

    Naive B cells from RR MSers make a toxic factor for oligodendrocytes that does not appear to be antibodies. would be if they told us what the toxic factor is.

    Is this why rituximab works?

  36. Kissler and Sotigui published in medical hypothesis.....which means lazy armchair scientists that should get off their bums to try and disprove (the Popper way) their ideas.

    You are basing these ideas around Sardinia perhaps.

    Sardinians have a different genetic risk factor to Northern Europeans. I think infecting people with worms is one thing infecting them with Malaria is another perhaps a step too far.

    There must be MSers going on holidays that get infected?

  37. Good morning,
    I couldn't find much in the blog about this issue(maybe I'm not so good in searching), but I would like to know how happens that someone JC virus seropositive, become seronegative during Natalizumab therapy (see 22 May 2012 post,"Research: JC Virus seropositivity in MSers"). I suppose it's not related to Natalizumab specifically, can you give me some information about that, and if possible some research link?
    Thank You

  38. Would you be able to comment on, that interferon does not help long term progression?

  39. @Francesco

    I guess it's a false negative / false positive issue, as the test isn't sensitive enough.

  40. Anonymous said...
    the most important thing is contact with malaria in childhood to prevent multiple sclerosis. probably similar to malaria organisms may be involved in multiple sclerosis because of these facts. obviously infect yourself with malaria is a bad idea. Recent studies discuss protomyxozoa in multiple sclerosis, and I think it's an interesting investigation. only hypothesis.
    other research interest is the relationship of multiple sclerosis with Sarcocystis. These studies have been conducted in Colombia for over 20 years. Furthermore, the scientist was in the hospital Reading in England in 1994, but his research was not heard because he explained things still unknown in multiple sclerosis. In 2000 also he was in Spain with the same result.
    Recently his laboratory has made a website with data from studies in multiple sclerosis patients and treatments.


    I think if we do not know the cause of multiple sclerosis, any organism must be undervalued.

    Wednesday, July 18, 2012 6:13:00 PM

  41. "Would you be able to comment on the link.."

    Prof G will do this but looks like you have got the conclusions of the study

  42. Hello mouse doctor, no problem with delete my link, sorry for attaching a link here.
    would be interesting if you could read about it and tell me your conclusions.
    thank you very much.

  43. mouse doctor! with google translate the language is not a problem!!if you prefer i can translate the information and send you more links about this studies. would be important to know your opinion. regards, alvaro

  44. Yes I did use google translate before removing the link and it seemed that people were being offered tests and trials.

    I decided not to read further as I am not going to be endorsing this or assisting in recruitment, even if it is well intentioned and good stuff.

  45. I meant you ought to read the summary of "work done" on the web. not having any recruitment. and studies are made for more than 10 years.

  46. Whay does a "Medical student gets top marks for MS study"

    I thought that giving 100% for a paper with what appears to be flawed logic was a bit surprising.
    Just because people with MS have EBV doesn’t prove much. The real question is does everyone with EBV have MS? If not then perhaps EBV causes a response to an underlying disorder rather than being the cause?

    Someone has forgotten to check the “allow comments” box on the Medical student gets top marks for MS study post so I couldn't post this there..


  48. "Why was a medical student given top marks for their project".

    This is because they did amazingly well.

    Generally student projects give enough information for them to be able to write a report.

    Undertaking a project is an exercise to prepare them for writing papers.

    Seldom is the work of a good enough standard to warrant even one publication.

    As you can see this student in the time undertook the work and published four papers.

    Therefore full credit to both Julia the student and Ram the supervisor for helping her pick a project that would give her information to write about.

    Her write-up was considered great and I understand is to recieve a special prize from Oxford University.

    If you set the grade at the level of Is this work of a publishable quality, which what they do and this is where the top marks are set. Then the output speaks to the answer.

    There are some people who have missed the point, because they think it is the results found in the work that is the important thing. It is not.

    The project is a excerise in thinking, asking and answering questions and then importantly writing them up as a report.

    The report is what dictates the mark, becuase you have to realise that some student can do an experiment and it can fail through no fault of the student, but if the write up is good they can still do well.

    We do not forget to check the allow comments box, sometimes we forget to turn this function off. We go this for posts such as CCSVI posts and generally things to do with Team G

    This is because we have learned that some people sometimes do not get the signficance of the posts and post what are generally hurtful abuse or unhelpful comments

    You are knocking someone who has done exceptionally well.

    It is all well and Dandy for Prof G to take abuse (constructive) for things we write because we are making the post and we can come back at you, but it is not alright for you to abuse our work colleagues (often for misconceptons) on whom we have posted about.

    This blog is about research it is also about education. It is also about who we are so we post on our successes and failures.

    Some of you are not interested in this fluffy stuff, some of you like the human side. If you don't like it don't read it

    As to the answer to your questions please read the blog there are lots of posts that will help answer this part of the

  49. Well said MouseDoc. I, for one, like the mixture of science plus more personal stuff & I believe we all do. I don't think people wanted to offend Julia or the team - sometimes people are just fed up with the situation but not Team G - we bloggers like you all a lot.

  50. Unfortunately we do not always provide enough information such that you can see where we are coming from.

    Likewise the context of what is written and what is perceived is not always apparent.

    I was once (ho ho) really livid about a comment made but my continental colleague from Northern Europe could neither see or feel the insult aimed directly at them

    is not

  51. Re: I was once (ho ho) really livid about a comment made but my continental colleague from Northern Europe could neither see or feel the insult aimed directly at them

    Oh, livid only once:-))

    It's actually a very interesting subject in the area of socio linguistics - how your background influences your speech behaviour and understanding.

  52. Best not ask what you think my background influences are.......but as you can see by background influences make me into toilet mouth:-)

  53. This is so OT but fun:-) I meant nationality rather than social background (Northern Euros vs Southern and their different speech behaviour)MD.

    How I would judge a Yorkshire man :-) ? Feisty, fist would fly in an argument but very good at making up, holds no grudges, forthright.

    Again so OT but thread reminded me of my earlier interests when MS was not the main subject of my life....

  54. I'd like to ask a question to Prof G: do you think there's anything in BCG treatment for MS? I've read an old report that suggests in a small cohort it reduced lesions... Would it be something worth getting inoculated for?

  55. "How I would judge a Yorkshire man"

    With this description I woud have to put Joan back on my Christmas card list.....Not going to happen:-)

    Just goes to show you can't judge a book by its cover.

  56. BCG is worth getting incoulated to reduce your risk of catching tuberculosis and other mycobacteria not MS

    However this is not usually given to adults and there are some countries such as US that do not usually do this.

    The level of efficacy against tuberculosis may also vary in UK it is 60-80% effective but in other countries it may be less successful.

    I'll let Prof G comment on the rest of your question

  57. Re: "BCG"

    Yes, there was some activity in this field, that was based on the phase 2a results of an Italian study. We actually wrote a paper on this:

    Rook GA, Ristori G, Salvetti M, Giovannoni G, Thompson EJ, Stanford JL. Bacterial vaccines for the treatment of multiple sclerosis and other autoimmune disorders. Immunol Today. 2000 Oct;21(10):503-8.

    As there has been no further studies, we could not recommend BCG!

  58. A lot of us here in India have latent TB but people still get MS.
    My daughter was tested for various infections before starting rituximab for MS. The TB tests were positive and she was treated with 6 months of antibiotics.


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