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Solve ME/CFS Initiative: Ramsay Grant program 2019 awards

Discussion in 'BioMedical ME/CFS News' started by Andy, Oct 31, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    2019 is our biggest year yet! We have over 30 researchers working across seven projects. The group represents 12 academic centers and organizations. Three of the studies will be done collaboratively, integrating scientists from different labs.

    “Altered T cells in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    Liisa Selin (PhD) and Anna Gil (PhD)
    University of Massachusetts Medical School


    “Possible class II MHC deficiency in patients with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)”

    Bruno Paiva (PhD)
    University of Navarra, Spain
    Collaborators: Manuel Ruiz Pablos, Rosario Montero Mateo (MD), Aintzane Zabaleta Azpiroz (PhD), Diego Alignani (PhD), Idoya Rodriguez Serrano, Sonia Garate Luzuriaga


    “Defining the postural contributors to post-exertional malaise (PEM) in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”

    Shad Roundy (PhD)
    University of Utah
    Collaborators: Cindy Bateman (MD), Turner Palombo, Andrea Campos


    “Extensive characterization of the ME/CFS blood and CSF microbiome + virome ”

    Nikos Kyripides (PhD), David Paez-Espino (PhD), Kris Fobes
    Berkeley University DOE Joint Genome Institute; GeneSavvy
    Collaborators: Amy Proal (PhD), Jonas Bergquist (MD, PhD), Robert Moir (PhD)


    “Unraveling endothelial function in ME/CFS”

    Francisco Westermeier (PhD)
    FH JOANNEUM University of Applied Sciences, Austria
    Collaborators: Nandu Gowami (MD, PhD), Nuno Sepulveda (PhD), Monika Riederer (PhD), Bernhard Wagner (PhD), Jennifer Blauensteiner (PhD)


    “PARsing post-exertional malaise: does post-exertional autonomic recovery (PAR) impact post-exertional malaise?”

    Kegan Moneghetti (PhD)
    Stanford University
    Collaborators: Lily Chu (MD), Jeffrey Christie (PhD), Donn Gavert (MS), Tullia Lieb


    “Brain perfusion changes in chronic fatigue syndrome before and after exercise challenge”

    Michael Van Elzakker (PhD) and Kenneth Kwong (PhD)
    Massachusetts General Hospital, Harvard Medical School
    Collaborator: Suk-tak (Phoebe) Chan (PhD)

    Visit https://solvecfs.org/smci-ramsay-grant-program/ to learn about each individual project.

    Also, watch out for a video I recorded with Allison Ramiller and Dr Sadie Whittaker from Solve where we briefly discuss each of these projects. I'm still editing it at the moment but hope to be able to release it soon.

    ETA: The video mentioned above is now available here, https://www.s4me.info/threads/video...their-ramsay-grant-program.12004/#post-212816
     
    Last edited: Nov 4, 2019
  2. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    @Simon M @Chris Ponting
    You guys will be interested in this. The team are looking at rare CD4+CD8+ Tcells and quantifying the TCR repertoire of this unique population
    https://solvecfs.org/liisa-selin-and-anna-gil/
     
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  3. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Great.
     
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  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Way to go SMCI!

    This is what can be done, as opposed to government research granting agencies who say they don't receive enough applications for ME; or enough quality applications.

    The Solve ME/CFS Initiative does.

    Of course quality applications are out there!

    Lame excuse by government agencies.

    Hope they move off this mantra.
     
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  5. beverlyhills

    beverlyhills Established Member (Voting Rights)

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    “Possible class II MHC deficiency in patients with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)”

    Bruno Paiva (PhD)
    University of Navarra, Spain
    Collaborators: Manuel Ruiz Pablos, Rosario Montero Mateo (MD), Aintzane Zabaleta Azpiroz (PhD), Diego Alignani (PhD), Idoya Rodriguez Serrano, Sonia Garate Luzuriaga


    Middleton D, Savage DA, Smith DG. No association of HLA class II antigens in
    chronic fatigue syndrome. Dis Markers. 1991 Jan-Feb;9(1):47-9. PubMed PMID:
    1683826.
     
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  6. Simone

    Simone Senior Member (Voting Rights)

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    Great to see some new names in there! Solve is doing a terrific job with these seed grants!
     
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  7. Wilhelmina Jenkins

    Wilhelmina Jenkins Established Member (Voting Rights)

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    There is a difference between the Ramsey Grants and the NIH grants, though. Ramsey Grants are preliminary studies. When they obtain promising data, they can go to NIH for a larger grant. I actually believe NIH when they say that they are receiving grant proposals. All of the information that advocates have obtained confirms that.

    The Ramsey Grants and other pilot studies should lead to larger grants - Dr Younger is a great example. But right now there are things that NIH could be doing to jump start the field. The #NotEnough4ME letter to Dr Koroshetz lays many of them out.
     
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  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Is there any info as to the combined total of funds for these seed studies? They look impressive and it’s nice to see a range and increase in number.
     
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  9. Andy

    Andy Committee Member & Outreach

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    https://solvecfs.org/about-the-ramsay-grant-program/
     
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  10. mariovitali

    mariovitali Senior Member (Voting Rights)

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    Very interesting indeed, i am particurlarly happy that Dr Van Elzakker will have the funds to look more at brain perfusion.
     
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  11. Ravn

    Ravn Senior Member (Voting Rights)

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    Do researchers new to the field get some sort of coaching from Solve ME/CFS?

    One or two of the abstracts seem to indicate a somewhat patchy understanding of ME. That's not to say the projects are of no value or that new researchers aren't welcome - quite the opposite - only that ME is complex and it naturally takes a while to fully get your head around it.

    From Liisa Selin and Anna Gil's project Altered T cells in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”
    Has anything been presented about these early findings? They sound intriguing, in a preliminary sort of way.
     
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  12. lansbergen

    lansbergen Senior Member (Voting Rights)

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    https://www.nature.com/articles/s41598-017-11926-2

    Moreover, we showed that a greater proportion of CD4+CD8+ T lymphocytes have an enhanced capacity to produce cytokines (IFNγ, TNFα, IL-2, IL-4, IL-17A) and lytic enzymes (perforin, granzyme B) compared to CD4+ and/or CD8+ T lymphocytes.
     
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  13. Andy

    Andy Committee Member & Outreach

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    This gets covered in the video that should be released in the next day or so. In order to assist researchers applying to the Ramsay Program, particular those new to the field, they have put together this document which they call a Researcher Toolkit, which includes an overview of what ME is for patients, https://solvecfs.org/wp-content/uploads/2019/04/Toolkit-2019-Final.pdf

    Additionally, all applications go through a peer review process which should pick up any applications that really don't have a proper understanding of ME.

    The only thing published that talks about CFS is this review paper here from 2011, https://www.s4me.info/threads/heter...ring-viral-infections-2011-selin-et-al.11905/

    I haven't asked the question but my guess is that perhaps they have been doing unfunded preliminary work which has given them this data.
     
  14. lansbergen

    lansbergen Senior Member (Voting Rights)

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  15. Andy

    Andy Committee Member & Outreach

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  16. Andy

    Andy Committee Member & Outreach

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  17. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    From: https://solvecfs.org/kegan-moneghetti/
    Unfortunatey, Kegan seems to be unaware that Max Nelson et al. did investigate just that, namely heart rate recovery after 2 day CPET. (and found no meaningful difference)

    There may be ANS differences, but I strongly suspect they are an additional symptom, a consequence (and possibly even positive adaptation) not a cause of the symptoms.
     
  18. Andy

    Andy Committee Member & Outreach

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    Well, that's me told then.... :rofl:
     
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  19. Adrian

    Adrian Administrator

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    I think often government research funding is built on a model where they will improve the state of the art based on a reasonable body of knowledge. Its unfortunate that there isn't this knowledge for ME and that government funding agencies don't have the sense to realize this and look for ways to bootstrap research and get new research going through smaller pilot grants.

    Some things like the GWAS study that is currently being proposed simply don't work with pilot studies as vast numbers of samples are needed to make any statistical sense. Here it is important that large funding agencies have the sense to realize that hypothesis forming studies are very valuable.
     
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