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Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

Discussion in 'General ME/CFS News' started by AndyPR, Aug 18, 2017.

  1. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    If it has not been flagged up before it is worth noting that the ME Biobank has the second largest collection of samples within the UCL Biobank facility. The largest is a general Biobank on an NIHR grant. The ME Biobank is unusual in being NIH funded. But what is clear is that this is no tin pot collection to be gazumped by other people who feel they are more of the in crowd. Our ME Biobank is a seriously impressive resource and we desperately need researchers to tap into it. This is exactly the situation where it should be useful. Someone suggests an important finding and what do you know we have 200 samples sitting waiting ready to confirm it, all properly documented with controls - with the samples having been gathered for reasons completely unrelated to the specific question. The latter is crucial because it makes it impossible for there to be selection bias on samples.
     
  2. Sasha

    Sasha Fine, thank you

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    What would be needed to bring it into play now to attempt to replicate/extend the Mark Davis work?
     
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  3. aimossy

    aimossy Senior Member

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    @Jonathan Edwards I always follow Jo Cambridge's talks on their work with B cells at UCL because their work is obviously crucial and importantly working with/alongside Fluge and Mella. I can't remember where they access their cohorts for study that aren't directly with the Norwegian team. Are they accessing some cohort for studies through the biobank too?
     
    Last edited: Aug 22, 2017
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    We need a UK research group with expertise in CD8 clonality to take an interest in ME, and some grant funding. CD8 clonality should be a fairly popular field these days but I don't know of anyone immediately relevant.
     
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  5. Sasha

    Sasha Fine, thank you

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    Could a crowdfund help, given that getting MRC or funding from other non-ME organisations is likely to be slow/impossible? Or a call for researchers from one of our charities, who might be willing to front the money from their existing funds? Or does this sort of thing cost millions?

    I think it's for patients and our allies to try to move things along any promising line as quickly as we can.
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    One needs to have the right T cell people interested. Then they think about what funding would work for them. There is little point trying to raise money in advance of that.
     
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  7. Sasha

    Sasha Fine, thank you

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    How can we (or Mark Davis) get them interested? What steps need to be taken to get this underway?

    It would be great to have a new UK or European team doing some proper biomedical research on ME here - not only do we need a replication of this work, but we need to be attracting good new people to the field and gaining attention for it.
     
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The word needs to be passed around in as many places as come up. No doubt it will be a talking point at the next IiME meeting and maybe something for EUROMENE. There are good immunologists at LSHTM itself but there have been some moves recently. Charles will no doubt be keeping an eye out too. I have emailed a few people who might be in the grapevine.
     
  9. BurnA

    BurnA Senior Member

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    I would guess Ron Davis or the OMF will look to replicate any findings of interest in separate studies too.

    That's what they are doing with the Naviaux metabolomics study.

    Obviously the more groups involved the better but I am sure when a paper is published we will hear more from Ron / OMF.
     
  10. MEMum

    MEMum Senior Member

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    Hi @Sasha, good to hear from you again
     
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  11. aimossy

    aimossy Senior Member

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    I'd like to say thank you. I sincerely appreciate that Jonathan has taken the time to share about this so that it comes across the path of some researchers radar as something of interest.
     
    Last edited: Aug 25, 2017
  12. Sasha

    Sasha Fine, thank you

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    Thank you very much for doing this. We need to push to get important work replicated as quickly as possible, and it would be a win all round to get a replication attempt in UK/Europe, both for the Mark Davis team and for us.
     
  13. perrier

    perrier Senior Member

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    There are not enough doctors and researchers working on this illness. Can't help but be thrilled by Dr Ron Davis and team, but there aren't enough hands on deck. Shameful.
     
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  14. Sasha

    Sasha Fine, thank you

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    Yes, we've got to be active in pulling people in.
     
  15. paolo

    paolo Senior Member

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  16. *GG*

    *GG* Moderator

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  17. Janice Hargreaves

    Janice Hargreaves

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    Paolo....... all I can think to say is Wow. Many thanks for posting this.

    What an excellent post. Lots of info and lots of hope.

    So since I'm in UK.......begs the questions;

    1) Will anybody be testing the ME Biobank samples like this to see if this work can be replicated?
    2) Does the ME Biobank get any funding from UK government to help keep it going?

    If the answers to the above are "no" then......

    3) Why not?
    4) What can be done to improve on that?
     
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  18. paolo

    paolo Senior Member

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    The second step (TCR clustering) and third step (epitopes finding) of what I have named the universal immune test, are based on a technology (a combination of bioinformatics and some laboratory techniques) that are available only at Stanford, at present, as far as I know. So, there should be a joint effort. The main problem is lack of money. I think that the entire process, from TCRs sequencing to epitopes discovery for a single patient is quite expensive.
     
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  19. Frenchguy

    Frenchguy

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    paolo likes this.
  20. Frenchguy

    Frenchguy

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    @Jonathan Edwards
     

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