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UK ME/CFS Biobank hosting Unrest screening with livestreamed Q&A after, Thurs 2nd Nov

Discussion in 'General ME/CFS news' started by Andy, Nov 2, 2017.

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  1. Andy

    Andy Committee Member

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    Screening being held at the London School of Hygiene and Tropical Medicine tonight with a livestreamed Q&A afterwards with Dr Charles Shepherd and Prof @Jonathan Edwards

     
    Andy, Nov 2, 2017
    #1
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Guess I'd better find a shirt without paint stains!
     
    Jonathan Edwards, Nov 2, 2017
    #2
    Solstice, Scarecrow, arewenearlythereyet and 13 others like this.
  3. Andy

    Andy Committee Member

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    Here's your chance to see @Jonathan Edwards without any paint on him (presumably)!
     
    Andy, Nov 2, 2017
    #3
    Solstice, Viola, Cheshire and 4 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Shirt and jacket no sign of paint
     
    NelliePledge, Nov 2, 2017
    #4
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  5. Joel

    Joel Senior Member (Voting Rights)

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    thanks @Jonathan Edwards . I would thank Charles and Drs Cliff and Nacul but they are not members here. I hope they might consider joining, we can be a very welcoming bunch and it's good to have something positive going on in the UK.
     
    Joel, Nov 2, 2017
    #5
    erin, MEMarge, Esperanza and 6 others like this.
  6. Sasha

    Sasha Senior Member (Voting Rights)

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    Somebody (memory, memory o_O) said that in a few days, the LSHTM CureME group will be announcing a Justgiving fundraiser for £10k to raise money to fund a study to be run using biobank samples (researchers will have to apply and have their application assessed). I think a stretch-goal may be £25k, if I've got that right.
     
    Sasha, Nov 2, 2017
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  7. Sasha

    Sasha Senior Member (Voting Rights)

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    They're going to put a recording up at some point.
     
    Sasha, Nov 2, 2017
    #7
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    Wondering if the live streaming is an Unrest thing or LSTM. Good if other medical school events are also live streamed I want to see the Sheffield one
     
    NelliePledge, Nov 2, 2017
    #8
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    I was too slow.

    Looks like it will be available to rewatch soon:

     
    Esther12, Nov 2, 2017
    #9
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  10. Helen

    Helen Senior Member (Voting Rights)

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    Helen, Nov 2, 2017
    #10
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  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    Esther12, Nov 2, 2017
    #11
    Andy and Helen like this.
  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    Okay, it's no longer live (have they got spies here?!) but if you go back to the start, there's quite a long recording of someone laying out the table. It's nearly as good as the biscuit talk.
     
    Esther12, Nov 2, 2017
    #12
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  13. Skycloud

    Skycloud Senior Member (Voting Rights)

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    @Esther12 try 3 hrs 30 - begining of panel
     
    Skycloud, Nov 2, 2017
    #13
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  14. Trish

    Trish Moderator Staff Member

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    I forgot when it was on, but from the link above I've just watched the panel answering questions. It starts at about 3 hours 25 mins into the recording. Good overview of what the biobank is doing. They will be doing a Just Giving Christmas appeal.
     
    Trish, Nov 2, 2017
    #14
    Cheshire, Scarecrow and Andy like this.
  15. Sasha

    Sasha Senior Member (Voting Rights)

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    Sasha, Nov 17, 2017
    #15
    Esther12 and Andy like this.
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This link still works and takes you straight to the discussion.
    https://panopto.lshtm.ac.uk/Panopto/Pages/Viewer.aspx?id=3f756fa1-4190-454f-83a5-71a1063508bd

    very interesting QandA. I didn't realise that the Biobank don't have samples from children. Another reason why Crawley is so keen on the MEGA biobank idea(?)

    Question: Dr Jackie Cliff (Biobank researcher) said that they had not found evidence of the Natural Killer Cell problem; but in Unrest, Nancy Klimas says this is something she found......

    Which is right? Have I misunderstood(?) @alicec @Woolie @Hip
     
    Sly Saint, Nov 20, 2017
    #16
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    Can't remember seeing anything about the brief exchange between Jonathan Edwards ad Charles Shepherd about NICE in the Q&A at the bio bank. Seemed like they or at least Charles are aware of more positive developments to come. I can only think that either
    - NICE are going to put interim wording in place about GET/CBT
    Or
    - the new guidelines committee is being constituted and there are some good biomedical people signed up
     
    NelliePledge, Nov 20, 2017
    #17
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  18. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    Scarecrow, Nov 20, 2017
    #18
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  19. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    Scarecrow, Nov 20, 2017
    #19
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  20. alicec

    alicec Senior Member (Voting Rights)

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    My understanding is that there is no consensus that there is low NK cell activity in PWME. There have been too many inconsistencies and failures to replicate results.

    I believe there is an international study which is trying to replicate results but really I am not up with the latest.

    @Jonathan Edwards should know more about this.
     
    alicec, Nov 21, 2017
    #20
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