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Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center

Discussion in 'BioMedical ME/CFS News' started by Andy, Oct 22, 2017.

  1. Three Chord Monty

    Three Chord Monty Established Member (Voting Rights)

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    Interesting. I don't follow them on Twitter but am used to seeing their tweets as plenty of people I do follow end up retweeting or responding to tweets so they end up in my feed. Just seemed a bit odd that a meeting with those people would take place with virtually no discussion--nobody even responded to their tweet. Surprised there wasn't any sort of feedback whatsoever, considering the size and rep of the crew involved.
     
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  2. Andy

    Andy Committee Member & Outreach

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  3. Andy

    Andy Committee Member & Outreach

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    Code:
    https://youtu.be/JAViJJIbSjk
     
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  4. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Interesting. I didn't understand when Neil McGregor said at the Australian conference that US metabolomic data was relative which made comparison with his data difficult.

    I'm going to have to watch the video again but if I understand right, in the US a NIST sample standard is used so results are relative to that. Oliver Fiehn stated that they are developing and using other tools that allow absolute measurements to be compared across studies.
     
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  5. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Oliver Fiehn states that there is a central website for storing metabolomic data from studies (blood, tissue, all species). At present there are 994 studies posted.
    https://www.metabolomicsworkbench.org/

    You can search for Human=> Blood => Chronic Fatigue Syndrome here
    https://www.metabolomicsworkbench.org/data/metsearch_MS_form2.php

    This brings up studies from Robert Naviaux (2 datasets) and Oliver Fiehn/Ian Lipkin (4 datasets) for those interested in raw data number crunching.

    ETA: If you leave the sample source blank and search Human => <Blank> => Chronic Fatigue Syndrome there are also three datasets for CSF fluid from Fiehn/Lipkin. Does anyone know if this study of CSF has been published?
    ETA2: FYI - Raw data for CSF fluid is 6G + 4.5G + 0.5G.
     
    Last edited: Aug 16, 2019
  6. Andy

    Andy Committee Member & Outreach

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    ME/CFS Q&A – What do you think are the most promising lines of ME/CFS research right now?

    Copy and paste
    Code:
    https://youtu.be/5RljQXX1FCY
     
  7. Forbin

    Forbin Senior Member (Voting Rights)

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    It's interesting that Dr. Komaroff now seems to be allied with Columbia's Center for Solutions. I wonder if this is a recent development.


    P.S.

    I have to admire a man with the 5 Platonic solids on his desk (though this may not be his desk). I used to have an icosahedron on mine. :)

    Platonic Solids.jpg
     
    Last edited: Oct 11, 2019
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  8. duncan

    duncan Senior Member (Voting Rights)

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    Strangely, I suppose, most things associated with Columbia U leave me a bit frightened.
     
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  9. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I saw someone posted that one of the main US medical websites (can’t remember which) that still refers to CBT/GET as a treatment him as the reviewer of the ME/CFS content. And it has been drawn to his attention. Would have thought that leaders in the field (as ME pedia describes him) should be taking a lead on weeding that BS out now PACE has been debunked and removed from CDC.
     
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  10. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    That desk definitely looked staged. I'm sure nobody actually works at it like that. Microscope and glass flasks?!
     
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  11. Trish

    Trish Moderator Staff Member

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    I agree, it struck me immediately as a stage set that said 'I'm a scientist'. No one works with that stuff cluttering up their desk space. Odd that there was no computer.
     
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  12. strategist

    strategist Senior Member (Voting Rights)

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    Using the medicine subreddit to observe attitudes towards ME/CFS, I think there has been a shift. The JAMA article by Komaroff in particular seemed to make a particularly big impact. This video is good too: easy to understand without going into technical details or controversy, with a positive message. We need this kind of PR to undo some of the negative attitudes towards ME/CFS.

    There should alsways be room to discuss controversies and technicalities but the average person really just needs to hear that views towards ME/CFS are changing, that it's real and that we're beginning to discover its associated biology and that it's a problem that should be taken seriously.
     
  13. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Yay for a positive reply!! I thought he came across well, I really think we have to appreciate any pluses that come along.
     
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  14. andypants

    andypants Senior Member (Voting Rights)

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    There is a Mac behind him on another desk:) but yes, definitely staged.

    I’m also unsure about some of his claims, but I agree it’s a plus that he seems to reach some people who have been very reticent to believe that there’s anything real to ME/CFS.
     
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  15. rvallee

    rvallee Senior Member (Voting Rights)

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    It did? I usually avoid this sub, it's so damn depressing how hateful it can be towards us.

    Baby steps...
     
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  16. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    This guy Professor -- has been praised by Cort Johnson for his superb communication skills.

    My impression was there wasn't much substance (e.g. new science) but it was interesting. Re gene activation --- I recall Wenzhong Xiao presenting data which showed that gene activation in ME most closely resembled SEPSIS; also, some of the post viral/bacterial theories rely on gene activation -I recall a significant publication a few (2?) years ago which showed one virus, associated with ME (Epstein Barr virus?), had the ability to activate a significant number of gene's.

    So interesting but too superficial --- different target audience to you folks though.
     
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  17. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Yeah, it's clearly something they set up for the video. It's almost identical to what was used in the last video that they posted.

    Kamaroff Video.jpg
    Fiehn Video.jpg
     
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  18. Forbin

    Forbin Senior Member (Voting Rights)

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    I'd guess it's just part of a Columbia U.|Mailman School of Public Health media facility. It does seem kind of... "claustrophobic."

    ...and a bit "Rocky Horror." :)

    [​IMG]
     
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  19. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    I wonder if there is a condition, in the NIH award, that they need to engage the public--- in the best traditions of a box ticking exercise -- here's the evidence (box ticked)!
     
  20. dreampop

    dreampop Senior Member (Voting Rights)

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    Almost 2 years on since the 3 year grants were awarded.
     
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