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USA: JAX ME/CFS Center and Derya Unutmaz news

Discussion in 'News from organisations' started by Andy, Nov 15, 2017.

  1. Andy

    Andy Committee Member

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    Read more here https://batemanhornecenter.org/dr-derya-unutmaz-explains-collaborative-research-center-crc-bhc/
     
    ahimsa, Cohen, Sean and 15 others like this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This is a welcome development:

    "We have also engaged a range of community stakeholders, including ME/CFS patients, physicians, educators, and community activists, including #MEaction advocate Jen Brea, to participate in our Community Impact Steering Committee. Linda Avey, who is the CEO of the tracking platform Precise.ly, will help in patient clinical data tracking using online apps. Together, they will provide advice and guidance on study design, patient recruitment, and, importantly, interpretation of research results from a patient-oriented perspective, and will ensure that the JAX ME/CFS CRC remains connected to the needs of patients and physicians."
     
    MEMarge, Inara, NelliePledge and 7 others like this.
  3. Helen

    Helen Senior Member (Voting Rights)

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    Really good news!
    I´ve been following Derya on twitter https://twitter.com/Derya_.
    I like that he, beside the focus of his research, tells that he carefully listens to ME-patients. Maybe we should invite him to the forum? I don´t mean we should take his precious time, but he might be willing to comment on some issues.
     
    Last edited: Nov 15, 2017
    MEMarge, Inara, ahimsa and 6 others like this.
  4. Cheshire

    Cheshire Moderator Staff Member

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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    I couldn't read the piece on that page because it's quite faint grey type on a white background, so I hope that Dr Unumatz won't mind me reproducing it in full here (broken up also for readability), especially since it includes a call for study participants:

    Derya Unatmaz of Jackson Laboratories explains the partnership between Bateman Horne Center, Jackson Laboratory, and many other collaborators as part of our exciting new research.

    Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating illness that afflicts up to two million individuals in the US and lacks both widely accepted therapies for its management as well as meaningful understanding of its biological underpinnings.

    Mounting evidence in ME/CFS patients suggests a significant role for immunological abnormalities that are thought to contribute to disease progression
    . More recently, the microbiome also emerged as an important potential contributor to immune perturbations.

    The overarching goal of our CRC is that immune cells in ME/CFS patients are programmed to respond aberrantly to environmental stimuli, or that the microbes they harbor in their gut perturb healthy immune response or metabolic activity.

    To achieve our goals for advancing the mechanistic understanding of ME/CFS and identifying new strategies for patient diagnosis, prognosis, and stratification, we assembled a team of researchers and clinicians and formed an integrative center structure with highly synergistic projects. This center structure has a Clinical Core, which will be located and managed by the Bateman Horne Center (BHC), one of the premier ME/CFS clinics in the country.

    The Clinical Core will then recruit and follow a cohort of early-onset ME/CFS patients for the duration of the project. Blood and fecal samples obtained at the Clinical Core will be sent to Jackson Laboratory for processing and analysis.

    At Jackson Laboratory we will extract, interpret, and integrate meaningful data from a highly detailed profiling of the immune system, metabolomics of the blood, and high-resolution gut microbiome profiling.

    These rich datasets will first be analyzed statistically to identify associations, then computationally to create a map of interactions among these biological and clinical/phenotypic components. With these analyses, we aim to create the first integrated clinical ontology to aid ME/CFS patient stratification.

    An important aspect of this data generation and correlative analysis is to generate novel hypotheses that could provide clues to the disease mechanisms. Therefore, we have built in approaches in the Clinical Project to assess mechanisticlinks between immune response and metabolism, which will be further examined in detail to determine the impact of isolated bacteria strains from ME/CFS patient microbiota on inflammation.

    Our multi-disciplinary investigative team combines expertise in immunobiology (Unutmaz), clinical management of (and clinical research in) ME/CFS patients (Bateman Horne Center), microbiome biology (Oh), clinical bioinformatics and biostatistics (Robinson) and Motsinger-Reif), and mass spectrometry (Yao).

    They are complemented by a group of collaborators and contributors with domain expertise in high-throughput genomic profiling (Robson), microbial genomics (Adams) and Mass Spectrometry core at Jackson Laboratory managed by Dr. Ahlf Wheatcraft.

    We have also engaged a range of community stakeholders, including ME/CFS patients, physicians, educators, and community activists, including #MEaction advocate Jen Brea, to participate in our Community Impact Steering Committee. Linda Avey, who is the CEO of the tracking platform Precise.ly, will help in patient clinical data tracking using online apps.

    Together, they will provide advice and guidance on study design, patient recruitment, and, importantly, interpretation of research results from a patient-oriented perspective, and will ensure that the JAX ME/CFS CRC remains connected to the needs of patients and physicians.

    If you would like to be screened as a willing research participant for any BHC research studies, please visit our eligibility screening survey found here.​
     
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  6. Allele

    Allele Senior Member (Voting Rights)

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    Can someone clarify what they mean by "early-onset"? Do they mean long-term patients, or newly-ill?
     
  7. MErmaid

    MErmaid Guest

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    Newly ill. But this term may be interpreted to mean different things by different researchers. For example, it could mean being ill for 3 years or less, which is how Nath said he interpreted it.
     
    Allele likes this.
  8. MErmaid

    MErmaid Guest

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    I very much agree with Dr K, that we need an Army of researchers studying ME.

    But I personally don’t know how to get from where we are today, to reach that goal?
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    Sounds positive. Thanks for sharing.
     
    Andy likes this.
  10. Andy

    Andy Committee Member

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    https://jaxmecfs.com/2018/01/26/scientific-concepts-flow-cytometry-overview/
     
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  11. Barry

    Barry Senior Member (Voting Rights)

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    What a great idea, for interested but non-scientific folk like me. Here's a bit that puzzles me:
    Presumably this means all the cells, despite being different types, are much the same size. If they varied much in size then the smaller ones would sometimes go along the tube side by side, and confuse results, especially if different-type small cells went along side by side. Are cells typically similar sizes? Or would they have to only do any single run with similarly sized cells, and tube to match? Or something I'm just missing?
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think the principle is that cells are diluted sufficiently that the chances of getting two passing through the light beam at the same time are very small. A pellet of a million white blood cells fills a bit more than a cubic millimetre. So a sample of 20,000 cells in 0.5ml would make them ~0.005% of the volume if my arithmetic is right. I forget the numbers we used to use but it was somewhere in this ballpark.

    The cells are of slightly different sizes. Lymphocytes are generally small and barely more than a nucleus. Monocytes are a bit larger. Blasts and plasma cells can be quite a bit bigger, but they all go down the tube with plenty of room. The type of cell is traditionally identified by a combination of forward and side light scatter, one being a measure of size and the other of granularity. Taken together that tells you pretty definitely whether the cells are neutrophil granulocytes, lymphocytes or monocytes. It may well be that now that it is much easier to use several different fluorescent dyes all at once to label lineage specific surface markers that sorting is now done more or less entirely on fluorescence (CD19 for B cells, CD3 for T cells etc.) but last time I looked at data we always had scatter data as a baseline for picking out the major populations.
     
  13. Barry

    Barry Senior Member (Voting Rights)

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    Yes, I agree with your arithmetic. That of course is the thing I was missing: that what goes along the tube is mostly fluid, with very spread out cells, relative to their size. That's really interesting, especially the reason for the forward and side light scatter. Thanks.
     
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  14. Andy

    Andy Committee Member

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    Blog from the Jackson Lab, an interview with Zaher Nahle of Solve ME/CFS Initiative.
    https://jaxmecfs.com/2018/02/06/advocate-spotlight-zaher-nahle-ph-d-m-p-a/
     
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  15. Andy

    Andy Committee Member

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    Part 2 now available
    https://jaxmecfs.com/2018/02/23/approaches-in-biomedical-research-flow-cytometry-part-2/
     
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  16. Andy

    Andy Committee Member

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    https://jaxmecfs.com/2018/03/08/scientist-spotlight-julia-oh-phd/
     
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  17. Allele

    Allele Senior Member (Voting Rights)

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    Well, she seems like a keeper!
     
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  18. Hutan

    Hutan Moderator Staff Member

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    The article is worth reading in full; it made me feel hopeful.

    It seems that they have a good chance of identifying differences in gut bacteria (importantly, potentially down to strain level) between healthy people and people with ME. And then working through the possible causes and consequences of those differences.

    All power to you, Dr Oh.
     
    Solstice, Trish, Skycloud and 3 others like this.
  19. Andy

    Andy Committee Member

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    https://jaxmecfs.com/2018/03/15/clinician-spotlight-lucinda-bateman-m-d/
     
    Inara, Skycloud, ahimsa and 5 others like this.
  20. Andy

    Andy Committee Member

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    https://jaxmecfs.com/2018/03/20/nat...ning-spots-treasure-trove-of-elusive-viruses/
     
    Louie41, brf, Solstice and 11 others like this.

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