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Mainstreaming ME Research: The 8th Invest in ME International ME Conference, 2013

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 3, 2013.

  1. Sasha

    Sasha Fine, thank you

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    As one of those people, it really got to me too! I've ordered the DVD but it was frustrating not to see it live-streamed as we've got used to seeing the FDA etc. do.

    I gather that IiME subsidise the cost of the DVDs so that patients can afford them but would it be cheaper to upload the content to YouTube? And better for IiME in terms of exposure? And for doctors in terms of education? Could livestreaming be a possibility? I've no clue about what's involved or what that costs.
  2. Sasha

    Sasha Fine, thank you

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    I agree. My impression - having heard her on Question Time or something (big UK political debate radio show) was that she's extremely politically astute. I can't read her mind and don't know her motivations but whatever the case, if our researchers and advocates and charities have now got things to the point where the smart thing politically would be to jump on the biomedical bandwagon, then the more she's brought into the fold to see that, the better. She has influence and it would be good if she could see the benefits to herself, as well as to us, of recognising that things are changing and acting accordingly.
  3. Valentijn

    Valentijn Activity Level: 3

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    I agree ... I just think some people are interpreting her presence to mean that she's on our side.

    But practitioners who are strong or long-time believers in psychosomatic theories regarding medically unexplained symptoms have never shown any capability of changing their views that I've ever seen. So I wouldn't read much into her appearance there, and it sounds like she did her best to avoid being contaminated by opposing views with her early departure :alien:
    Dolphin, Tito, ukxmrv and 3 others like this.
  4. Mark

    Mark Acting CEO

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    I wish you were there too Alex! Big time! :)

    Staines' last sentence got a good reaction from the audience of course. :)

    I think you're spot on in focusing on Bansal's suggestion/hypothesis/theory. That was probably the biggest light-bulb moment of the conference, for me (with the possible exception of the exciting embargoed hypothesis of Fluge which takes the whole thing to another level...), and I think Bansal's work in general may be a really key component in taking all this forward. I thought so at the time, but when I came to going through my notes to write up the article and looked up 'avidity', I got even more excited...as you say, that hypothesis could potentially explain sooo much, including why Rituximab works.

    One more detail to add to what you explained above: the idea is that known T-cell deficiencies could cause the failure in the maturation of the B cells, because (if I understand this right) one of their jobs is to manage these 'checkpoints' in the development of those cells, and (reading between the lines) if that fails, you end up with B cells that are missing some of their binding sites (paratopes). So they have lower avidity (less strength of binding to multiple target points) because some of those binding sites are missing or defective.

    At the time, I didn't quite understand why this might cause autoimmune antibodies, but (this may be an amateur's misunderstanding) it may be because the defective binding sites then start binding to the wrong things rather than binding to everything as you suggest (maybe it's both). The other part I wasn't 100% on is that I think he was saying that the dodgy B cells may then be attacking certain T-cells or T-cell components themselves (I think that may be related to the comment about cytokine/cytokine receptor autoimmunity) - so there can then be a vicious cycle whereby the malformed B cells cause problems for the T-cells that are supposed to provide the 'checkpoints' on maturing cells...that undermines the T-cells further leading to more malformed B-cells and the avidity gets lower and lower and becomes more and more ingrained.

    As you know, I'm only pretending to understand any of this :D but I'm certainly fascinated by immunology now!

    And amen to more studies and more funding...:)
  5. Mark

    Mark Acting CEO

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    Indeed, thanks Sasha...the more volunteers we have to write, proof-read, edit, administer etc, the more articles like this we can do...we do work round people's limitations, and many hands make like work...
  6. Mark

    Mark Acting CEO

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    Wow, I must have missed that...did they ever publish on that, or do you have a reference on them saying so?
  7. alex3619

    alex3619 Senior Member

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    Hi Mark, each individual antibody from an immature B cell can be expected to bind only to one or two things, or none, or a few, but the low specificity means they can be our own proteins. However if many such antibody types are being made, then many may bind to a few targets. Many times a few is still many. So each will have some limited specificity, but if this is a generalized problem then there will be so many being made, with so many targets accordingly. Its an intriguing hypothesis, though it needs more evidence.

    I have not read much on B cell maturation in a a long time, nor the current science on T cell involvement. It seems I might have some more reading to do ... like I need more reading but this is welcome information. :)

    Bye, Alex.
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  8. Esther12

    Esther12 Senior Member

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    Thanks Mark.

    re Gerada: So long as increased funding for specialist services is likely to help Chalder/White/Crawly/etc, I'd rather have money go to those patients with conditions that the NHS can really treat. For ME/CFS, give the money to patients imo. They'd make better use of it.

    I'm sure that a lot of the dishonest spin around PACE stems from a recognition that, if they were honest about the impact of their 'treatments', they would not be able to get funding. These cutbacks should be seen as a great opportunity to cut the quackery from the NHS. I think funding was increased too rapidly in the past, and along with some poor research and spun meta-analyses, this led to the NHS spending money on nonsense. Better to have nothing than be 'cared for' by those following the work of Chalder and White.

    Gerada is a good politician.
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  9. Firestormm

    Firestormm Guest

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    I agree with the frustration you express here Sasha. America is setting the bar high for us here in little olde UK to follow. I think though that IiME depend on this revenue stream - I might be wrong - but yes when you hear about things being 'embargoed' or said only to the audience and not expressed outside of the conference: it does rather add to the frustration when waiting for a DVD to be produced. Rather an olde school approach to modernity.

    Dolphin made a point on Facebook that some of the Rituximab comments might have been restricted or something - in relation to Dr Weir's comments above. I don't believe they were - but clearly something was. Presumably when the DVD is published such comments will be more widely circulated - so I'm not sure how things can be embargoed?

    Sorry if that doesn't make sense. I am rather shattered.
  10. Mark

    Mark Acting CEO

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    Thanks...and sure, there's a lot there, and it's going to take a while to digest!

    I think that 'potential novel candidate' were the exact words...that's what I typed anyway but it may have been slight shorthand. When I came back and went through it all, I found myself wondering if it might have been more like 'potential candidate novel phenomenon', in other words referring to the different associative cytokine network rather than a novel entity. At the time, I thought she was referring to a possible novel entity, but on reflection I'm not certain of that. In any case, this is all preliminary and has yet to be confirmed.

    But to be honest, it wouldn't surprise me at all if they find novel strains/species along the way...I'm hoping for something like the suttarrella they found in autism, but the caution here is that even if they do find such things, it'll still be possible they are side-shows, like opportunistic infections or things which just happen to have never been found before. There's such an unimaginably vast complexity to the biome in particular, that there must be masses of stuff out there to be discovered and some of it may turn out to be rather incidental. There will also be a big question mark over chicken-and-egg issues with such things: are they just taking advantage of an autoimmune condition, or are they the pathogen that triggered it? Or both...

    We'll have to wait and see, but for me, a breakthrough from those studies that explains the whole thing is only in my wildest dreams: the main thing for me is to see ME/CFS being studied by such a heavyweight team with such mainstream respect: I feel confident that they will find something because I'm sure there is plenty there to be found, and I feel hopeful that when they do so it will really draw attention and respect from other researchers and cause new people to really look more closely at ME/CFS and start researching it.



    Good point: the fellowships and studentships are really important. I also think the focus on gut bacteria is very forward-looking, because I think that's a frontier area of research that will become more and more important in the coming years. I have this suspicion that as the autoimmunity work proceeds there may come a point where the focus starts to shift towards studying the interactions with gut bacteria...it seems like it might be the next logical step in the hunt. I also have it in my mind that the University of East Anglia is something of a center of excellence in gut bacteria, though not sure if I've misremembered that...anyway it's great to have ME being studied in such contexts.



    It certainly has been a pretty epic undertaking! I've got a week's holiday ahead and expecting to spent most of it horizontal. :) I feel I should note at this point that I've had a lot of help from Simon along the way. Anyway, I really, really enjoyed it and I wanted to do it for my own enjoyment as much as anything; it was a bit of self-indulgence really so if people appreciate it, that's a bonus.
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  11. Mark

    Mark Acting CEO

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    More than welcome Gabby - and by the way, some of the things you did in your recent work on the FDA articles were a significant inspiration to me while I was writing this; you really made me think about some issues of writing style and I incorporated a lot of those things here.
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  12. Sasha

    Sasha Fine, thank you

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    I thought that too but I think I remember reading on their site that they subsidise the cost. I did a quick search on their site and could only find that in relation to their 2011 DVD:


    Another important factor is, of course, that IiME subsidise the cost of the DVD production in order to make it accessible to as many people as possible.

    Here's something from that same page:

    This year as well we have the new research from the Haukeland University Hospital, Norway. Before the conference the Norwegian presenters, Professor Olav Mella and Dr Øystein Fluge, discussed with us the amount of data that they could present regarding their exciting new research. They wished to present as much as possible but did not wish to compromise the publication of their imminent paper. IiME promised that we would not distribute the DVD (including their presentation) until the Norwegian researchers gave the go-ahead due to the magnitude and implications of their research. In return Professor Mella and Dr Fluge were very open in their presentation and gave as much information as they could.​

    We do not wish to jeopardise their research publication so we are now awaiting news of their imminent publication before beginning the distribution of the DVD. ​


    If they were livestreaming they could surely just stop for a bit; and if they were putting the conference up on Youtube they could just not upload the embargoed lecture until later.
  13. Mark

    Mark Acting CEO

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    Honestly don't know about this one...I don't think anything was mentioned and they seemed very much focused on B cell maturation specifically, but they don't seem to know very much about precisely what's causing the problems with B cell maturation or what's getting the problem started - I guess that's one of the frontiers and it sounds quite feasible to me that it might turn out that there are problems with the maturation of other cells as well. Hopefully somebody else on here can answer that - who's our immunology expert? :D
  14. Mark

    Mark Acting CEO

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    Thanks Alex, that makes good sense.

    While you're looking into the involvement of T cells in B cell maturation, you might want to have particular reference to IL 21,12, and 27 which were mentioned in Bansal's talk - and also anything else observed to be low in ME/CFS which is involved in B cell maturation.
    snowathlete and alex3619 like this.
  15. alex3619

    alex3619 Senior Member

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    It came up somwehere in all that discussion of XMRV, particularly when they were looking at immune markers. I don't know that it was ever published in a paper, and I dimly recall it might have been Mikovits who discussed it during a presentation. At the time they did not know what it might mean, it was only an observation. Now we realize it may be the smoke from the crime, and pointing us toward the gun.

    We could probably find out by contacting Mikovits or the WPI.
  16. alex3619

    alex3619 Senior Member

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    One thing I was going to blog on but is now delayed for some months is gamma delta T cells. They are an innate form of T cell similar to a Treg, and it was again the WPI who got me to looking at them by a comment that we appear to have too many with signs of polyclonal expansion. This ties into other work by Maes on LPS, which is why I was going to blog on it. Now perhaps I need to expand my parameters. I am not an immunologist, there is so much I do not know.

    Essentially what I was working on was alternate enteroviral life cycles and gut function. It now appears they increase translocation of gut bacterial products to the blood stream. In various paths that might or might not be relevant this can be shown to induce some of our problems ... if the path is significant. There are multiple ways to get to many things in the way the body works.

    In case anybody is not aware, lipopolysaccharide or LPS is a family of bacterial product, part of the bacteria's outer defence, and it can massively induce an immune response ... a generalized immune response. Its called a superantigen. Some gamma delta T cells are hard wired to detect LPS in the blood, and it sends them nuts so they alert the rest of the immune system.
  17. Mark

    Mark Acting CEO

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    This is the really sharp question for us I think. We're in a bind because we're all afraid to campaign for what we need most, fearing that "specialist treatment centres" will get translated into "more psychotherapy". The problem is how to campaign for the services we need without ending up producing more services that are harmful to ME patients. It's a real problem, but I think the answer lies in multi-disciplinary teams. That's what we need: teams of immunologists, neurologists, dieticians, specialists in sleep and exercise, and yes, the odd psychologist or psychotherapist as part of the mix, all in one centre so that patients can see the range of specialists they need for their own particular problems. One thought I have on this is that maybe such centres may be more achievable if we think about what other conditions need the same kind of range of specialists as us, and combine a couple of other conditions in what we're campaigning for. This kind of model does seem the obvious way forward in dealing with chronic illness though. And I do think, for sure, that if we're going to ask for something we need to be pretty specific in exactly what it is we want; a definite case of 'be careful what you ask for...'
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  18. Mark

    Mark Acting CEO

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    The point here is that conference-goers often get a sneak peek of results that are shortly going to be published. If too much of that news leaks out, the researchers may have more difficulty in getting it published at all. Nobody wants to publish old news. It's good for conference-goers to get some little teasers and bits of advance news, it makes the conference more attractive, and it's bad for all of us if the news leaks out. This is pretty much the norm in research rather than 'olde school' I think...I'd love to see a different model but until the entire research publishing system is dismantled, it's just the reality.
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  19. alex3619

    alex3619 Senior Member

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    Combining with other similar groups to achieve limited goals is something I am big on. I think this can be done.
    snowathlete likes this.
  20. Sasha

    Sasha Fine, thank you

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    I wonder if they'd at least consider putting the conference up on Youtube as individual presentations when each presenter gives them the OK - or livestream the keynote speeches or something.

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