Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 14, 2016.

  1. Sushi

    Sushi Senior Member Albuquerque

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    That is more or less the diagnosis he gave me a few years ago. I was also high in LPS.
     
  2. Mark

    Mark Former CEO

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    Ah yes, I remember that now! I rather liked that paper at the time, and it still looks good to me now. They seemed very preliminary findings, but interesting; this is a new and very fashionable field (independently of ME/CFS) that's moving forward rapidly just now, it seems. I don't know how solid the methodology is, perhaps @Simon could comment?

    The paper does mention ruminococcus, but mentions lots of other things as well in those results; one would have to look at all the detail to determine to what extent the rest of his findings are consistent with what Hanson found.

    It's been observed a few times before that it's a shame that KDM doesn't seem to publish papers regarding a lot of the things he talks about. If he did, that would be the way to get more people following up on what he says. But no doubt funding is a major issue there.

    It certainly will! At IiME it did seem like they were very interested in LPS; if one of these candidates could be shown to be correlated with severity or specific symptoms or subsets, I think that would be very significant.

    A reference for that study would be helpful too.

    Another reference you might like to track down... :D

    Hindsight is a wonderful thing. There have been so many promising leads and so many dead ends; so much that should have been properly followed up, and would have been followed up if the proper funding had been there. I've felt for a long time that when the answers finally come, we will look back and see that some of the key features were actually found 20 years ago or more and not followed up. Further on from that, when it's all well understood, we'll be able to see a simple test or piece of research that could have resolved things decades ago if only we'd known exactly what to do. But I think that's all hindsight really. It's always easier to work out the answer when you already know what the answer is! The problem is sifting through all the findings and figuring out which ones are true, which aren't, and which are significant and why. Having weak evidence of something is one thing; having proof is quite another - and all the necessary studies cost money. And a lot of what has been published will turn out to be flat out wrong - likely that will be the case for much or most of the published biomedical research on ME/CFS too - perhaps also for much or most of what KDM himself has published or claimed. Still, I do agree that all these things should have been properly followed up.

    Yes, that's very similar, but that aspect isn't surprising. I think this model of causality is fairly well established now in a number of diseases; perhaps a quarter or half of the IiME presenters over the last few years have been talking along similar lines, and talking about that as an established model for other diseases as they've done so...at least, if I've understood things correctly...

    As I say. :rolleyes: Another confounder is the mechanisms mentioned (by Scheibenbogen) whereby different pairs of antibodies (that either up-regulate or down-regulate their targets) could cause opposite symptoms in individuals who have one or the other, or both opposing sets of symptoms in patients that have both! There are lots of bits and pieces here, but it's fairly likely the picture will get even more complex in the next few years...
     
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  3. msf

    msf Senior Member

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    Sorry , there are no endnotes in a video!

    This is the recent KDM meeting abstract: http://forums.phoenixrising.me/index.php?threads/dr-de-meirlier-april-and-baff-iga-study.44919/

    I think the surprising thing is that the video is six years old - I am not aware of anyone else describing the disease in those terms in 2010 (except perhaps Maes). I agree that it would have been better if KDM had published more, but like you said, money was probably a limiting factor.

    http://forums.phoenixrising.me/index.php?threads/dr-de-meirlier-april-and-baff-iga-study.44919/

    I do not believe that ´much of what KDM has claimed may turn out to be false´, but it may not be the whole picture. In my view the disease is at least partially driven by the gut issues, but it may also be driven by autoimmunity in some patients - or perhaps there is some autoimmunity going on that affects the gut? I think the key to it all is working out why Ritux works for some, but I guess that isn´t all that easy to do...
     
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  4. Sasha

    Sasha Fine, thank you

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    This is an excellent artice, @Mark! Thanks so much to you and @Kina to attending the conference on behalf of all of us who can't go. I know what an immense amount of work it must have been to have produced something this comprehensive in so short a space of time and it's hugely appreciated - the suspense is terrible for those of us waiting for the DVD!

    Especially exciting to hear in some detail about Ron Davis's work. If you're planning more detailed versions of each presentation, I hope you might start with his! :)

    Really terrific job. :thumbsup::thumbsup::thumbsup:
     
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  5. Mark

    Mark Former CEO

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    Thanks Sasha. :) Yes it's a lot of work, but I do enjoy it and it helps me get a lot more out of the conference and understand it better.

    MEAction did a great article about Ron Davis' talk, and I wrote an extended section on that presentation including everything in my notes that wasn't covered in their piece. So I'm not planning on adding anything further about that one - sorry. I'll have another look but I think it's pretty much been covered now.
     
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  6. M Paine

    M Paine Senior Member

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    Thank you for your write up. I was wondering if there is any way to purchase a downloadable version of the DVD's?
     
  7. Bob

    Bob

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    Invest in ME make the videos available on DVDs only, so there's no way to download them, or watch them online.
     
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  8. msf

    msf Senior Member

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    Yeah, they need to watch out or it will be all over Pirate Bay and YouTube.
     
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  9. Simon

    Simon

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    Hi Mark, great job! I'm still working my way through as I've not been too well and have lots of questions, but as you tagged me, here's a response for now:
    This study only had 43 mecfs patients and 36 heathy controls, which is very small. But that'st the total sample, the nationality groups are even smaller. I don't think you can read anything into this, especially as the biggest difference they found was between healthy Norwegians and equally healthy Belgians, which could be down to diet and mean nothing (though it's likely to be an unreliable finding given such a small sample).

    Maybe one day there will be enough data for someone to do a meta-analysis, combinging data from many small studies to look for an overall effect. Though of course nationality (and diet) will confound that, making it harder to do.
     
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  10. Simon

    Simon

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    Great to see Vicky Whittemore shares patients views of the dire levels of NIH funding in the past.
    Think all patients would share that hope, nice to hear it coming from the NIH

    Euro collaboration
    Dull, dull, dull - but also so important: it's great to see stuff like this happen.
    I suspect I'm not the only one a bit confused by this - it seems odd for one group to establish a European research agenda that the other is presumably expected to buy in to. Hopefully stuff like this will work itself out in time

    UCL: Jo Cambridge and Fane Mensah
    Cool! That seem to be upping the game in the sophistication of looking at immune cell function. (I think the NIH intramural study will do this too, one of those study leader Nath mentions is an expert at studying immune cell interactions, eg the B/T cell interaction that Mensah is studying)

    Also, this seems a good place to park the official IiME abstract ofJo Cambridge's talk, where she gives what I thought was a really helpful explanation of how and why rituximab works in general.

    Dr Jo Cambridge (UCL, London) and Fane Mensah (PhD student) discussed B cell biology and rituximab treatment in patients with ME/CFS.

    … B cells are produced in the bone marrow, pass into the tissues, recognise antigens, following which they can interact with T cells, develop into plasma cells which then secrete antibodies.

    B cells are killed by rituximab, which binds the CD20 molecule on B cells. It is used immunotherapeutically in rheumatoid arthritis, lupus and lymphoma, all of which are affected by B cell function. Rituximab does not affect pre-B cells or plasma cells.

    In the clinic, rituximab (2 x 1 gm) is given intravenously 1-2 weeks apart. B cells are quickly killed in the blood, but decline slowly in the tissues. A blood test is performed at one month to see if the B cells are decreased, but there may be residual memory cells left in the lymphoid organs. B cells start to resume exit from the bone marrow at approximately 6 months.

    Rituximab works best in autoimmune diseases where auto-antibodies are part of the disease process. It removes the “parent” B cells of the rapidly turning over (short-lived) plasmablasts which make the auto-antibodies, and therefore stops the supply of auto-antibodies to tissues or from making part of pro-inflammatory immune complexes (such as in lupus and rheumatoid arthritis).

    Because of some positive outcomes in ME/CFS, does this imply that auto-antibodies are part of the disease process?

    The clinical response to rituximab can take months, and the time varies between diseases and patients. Tests need to be done at baseline, depletion stage, repopulation stage and during relapse. The B cells return once the rituximab is cleared from the bone marrow. Relapse is not always associated with B cell return. In rheumatoid arthritis, 70% respond to rituximab and, B cells are back in approximately 6 months. Some B cells can trigger a relapse when they come back but this is not always the case.

    In ME/CFS, rituximab may therefore stop the B cells differentiating into plasma cells, and stops the B cells interacting with other cells (such as T cells). Treatment protocols should thus be fitted to how the B cells are involved, by looking at the changes in the B cells. Interventions should be modelled specifically in the immune system changes in ME/CFS in order to target the patients most likely to respond.
    ...
     
    Last edited: Jun 20, 2016
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  11. msf

    msf Senior Member

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    Yes, it´s a small study, but then so are almost all of the studies done on ME so far. I don´t understand statistics, but doesn´t the fact that the same differences/trends were found between patients and controls in both the Belgian and Norwegian groups count for something? I think statisticians and medical types sometimes overlook what I would call circumstantial evidence.

    Also, going back to my original point, surely if it´s worth mentioning the findngs of the small Hanson study then its worth mentioning that it replicates the findings of an earlier small study?
     
    Last edited: Jun 20, 2016
  12. M Paine

    M Paine Senior Member

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    I guess I'll be buying a DVD player then. I'm not sure how being on DVD prevents people from redistributing them. DVD's can easily be trans-coded into any format you wish. If the aim is to distribute the conference material to as many stakeholders as possible, at the lowest cost, then online hosting or streaming is not a bad option. Paying for four DVD's and international postage is costly.

     
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  13. BurnA

    BurnA Senior Member

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    Could they monetize streaming ? I presume one of their aims is not to loose money either.
     
  14. Bob

    Bob

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    DVDs play in personal computers if you have access to one.
     
    Last edited: Jun 20, 2016
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  15. Bob

    Bob

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    I think it might simply be a case of being a bit old fashioned, and trusting what you know.
     
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  16. BurnA

    BurnA Senior Member

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    and playstations too ?
     
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  17. M Paine

    M Paine Senior Member

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    Oddly enough, I have several computers, none of which have a DVD drive. These days you can get by without one.
     
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  18. Bob

    Bob

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    Yes, DVDs are a bit old fashioned these days. I wish they'd place the videos on Vimeo, or similar. The production costs would be cheaper too. But it's just a minor grumble. The DVDs are an amazing resource. I've watched every conference since they began.
     
    Last edited: Jun 22, 2016
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  19. Bob

    Bob

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    I think so? But I've never owned one, so I'm not certain.
     
  20. AndyPR

    AndyPR Senior Member

    I've emailed them to ask the question, I'll let people know the answer when I get it.
     
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