The brain tissue abnormality analysis, 2020, and other proposed studies, Polybio Research Foundation, van Elzakker, Proal, Fobes

Discussion in 'ME/CFS research news' started by Ravn, Feb 18, 2020.

  1. Ravn

    Ravn Senior Member (Voting Rights)

    Aotearoa New Zealand
    Involved: VanElzakker, Proal, Fobes
    Last edited by a moderator: Feb 18, 2020
    Anna H, Mithriel, mango and 24 others like this.
  2. Ravn

    Ravn Senior Member (Voting Rights)

    Aotearoa New Zealand
    More snippets from the different projects described on this site.

    A lot of use of the term cutting-edge but no mention of financing (except for a donate button).

    A hugely ambitious project - can it be real?
    Kitty, MEMarge, Hutan and 8 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    I am afraid this looks very amateur and disorganised.
    Projects of this sort, to be done properly, need big infrastructural funding.
    It sounds like some people crowdfunding for their salaries rather than a serious scientific proposal.
    Jaybee00, Kitty, merylg and 2 others like this.
  4. Milo

    Milo Senior Member (Voting Rights)

    I think also that N=1 or 2 or 3 will be a problem as well. Did they represent the disease? how long were they sick for? Is aging involved in the pathology?
  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Well as a lay person I think that it Looks fantastic. I just hope they can get funding. I think that Michael VanElzakker is one of the compassionate commited and high end, connected, new generation we need. I must admit I was disappointed as I initially thought it was all funded and the age old question of “how” seems to uncertain .

    I note in the imaging project its written that

    Kitty, merylg, MEMarge and 5 others like this.
  6. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    This looks interesting and the kind of work that is needed and I hope it will be properly funded and well executed.
    Kitty, merylg, MEMarge and 6 others like this.
  7. alktipping

    alktipping Senior Member (Voting Rights)

    a nice wishlist I would be pleasantly surprised if they succeed in fulfilling just one . but then I really could do with a pleasant anything
    Kitty, merylg, shak8 and 4 others like this.
  8. Ravn

    Ravn Senior Member (Voting Rights)

    Aotearoa New Zealand
    Community Q&A with Polybio, October 26. Details and registration here:
    Sounds impressive but... funding.
    Why reserve the additional info on study design etc. for those "capable of making larger tax deductible donations"?
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  9. Kitty

    Kitty Senior Member (Voting Rights)

    Indeed – and do you have to make your donation first?
    Jaybee00, Andy, Ravn and 3 others like this.
  10. berban

    berban New Member

    Massachusetts, USA
    Just watched the stream. Was pretty impressed. Also a little confused at the current state of funding, since at times they seemed to indicate that some of the studies were already underway. (Edit: yeah they have no funding as of yet :( )

    You can watch the replay of the stream here:

    Based on what they were saying, I believe what they are getting at here is that they value the transparency of the funding, and want to allow larger donors to be able to fund certain aspects of the work selectively if they would prefer. I'm sure you could request the same thing as a small donor if you would be interested. That was my interpretation at least.

    Also I believe they mentioned that each project would cost in the neighborhood of $500k-$700k USD.

    One unrelated question I had was that Amy mentioned reading "dozens" of studies linking pathogen activity to connective tissue issues. Is this link really as well understood as that statement seems to suggest?
    Last edited: Oct 28, 2020
  11. dreampop

    dreampop Senior Member (Voting Rights)


    That seems like an awful lot. I'm not sure they can get there privately funding. Did MVE mention the PET study he was trying to do, I feel like I read that got funded a few years ago.

    Edit: apparently this was never fully funded via another thread.
    Last edited: Oct 28, 2020
    berban, Andy, Ravn and 1 other person like this.
  12. Andy

    Andy Committee Member

    Hampshire, UK
    Welcome to the forum Berban. :)

    In short, not that we are aware of. I'd also highlight that many studies linking pathogen activity to connective tissue issues doesn't necessarily mean that any link is well understood or actually there - after all there are many studies that 'show' that GET and CBT are useful treatments for ME...
    Mij, Michelle, berban and 2 others like this.

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