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David Tuller: Trial By Error: An Open Letter to The Lancet, Two Years On

Discussion in 'General ME/CFS news' started by Andy, Jun 19, 2018.

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  1. Barry

    Barry Senior Member (Voting Rights)

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    Presumably from this, Carol Monoghan has definitely been made aware of this already?
     
    Barry, Jun 21, 2018
    #41
    adambeyoncelowe likes this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    This is @Alvin quoting @dave30th .



    Have spent an hour with my MP this evening and given him @dave30th latest letter as well as many other briefings. He has adjusted his commitments so as to be there for as much of tomorrow as he can. As I understand it, he wil not make a speech but is familiar (as a former Cabinet Minister) with how to intervene so as to help the process.

    I am fed up - will be at the Brompton hospital tomorrow pm.
    Is there a link that can be picked up later? Not really fed up. Great progress but would like to be part of it in the moment.

    Good luck Carol for tomorrow.
     
    Binkie4, Jun 21, 2018
    #42
    adambeyoncelowe, Jan, MarcNotMark and 13 others like this.
  3. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    Thanks.
     
    BruceInOz, Jun 21, 2018
    #43
    adambeyoncelowe, Invisible Woman and Trish like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    OOps, I realise that I spelled Racaniello wrong.
     

    Attached Files:

    Jonathan Edwards, Jun 21, 2018
    #44
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Tis true :D


    Very glad to hear this. We really need to make the most out of this opportunity and everyone on our side needs to be armed to the teeth (with the truth)
     
    Alvin, Jun 21, 2018
    #45
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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    @dave30th can MPs /government officials sign? that is, if their job allows them to.
     
    Sly Saint, Jun 21, 2018
    #46
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  7. dave30th

    dave30th Senior Member (Voting Rights)

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    That's an interesting question that we hadn't really thought about. For credibility the letter was written for "experts" and "professionals" (doctors, lawyers) but I would think for these purposes being an MP and I guess a government official would qualify as being an "expert." I can touch base with Monaghan and ask her about it.
     
    dave30th, Jun 21, 2018
    #47
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  8. dave30th

    dave30th Senior Member (Voting Rights)

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    So Carol Monaghan has agreed to add her name to the open letter to The Lancet. She suggested asking the others who also signed the early day motion. I see there are quite a few. Are e-mails of MP standardized? Or is there a list of all MP e-mail addresses somewhere? Thanks!
     
    dave30th, Jun 25, 2018
    #48
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  9. Sasha

    Sasha Senior Member (Voting Rights)

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    Sasha, Jun 25, 2018
    #49
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  10. Andy

    Andy Committee Member

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    Index of all MPs, each MP page should have a contact email address for the MP - https://www.parliament.uk/mps-lords-and-offices/mps/
     
    Andy, Jun 25, 2018
    #50
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  11. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Brilliant. She is so valuable.

    With MPs on our side, it should be easier to pressure the Lancet and organizations in the UK that are still ignoring the problem.
     
    Last edited: Jun 25, 2018
    Hoopoe, Jun 25, 2018
    #51
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  12. Cheshire

    Cheshire Moderator Staff Member

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    Trial By Error: Yet Another Appeal to The Lancet, With More On Board

    http://www.virology.ws/2018/07/10/t...ther-appeal-to-the-lancet-with-more-on-board/
     
    Cheshire, Jul 10, 2018
    #52
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  13. Hutan

    Hutan Moderator Staff Member

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    It's really wonderful to see so many individuals and organisations wiling to stand for good science and better care for people with ME. I'm sure that there's a lot of work embedded in that list, with much time spent liaising with each signatory. Thanks @dave30th, and to all the signatories.

    I'm disappointed though not to see the Associated New Zealand ME Society (ANZMES) in the list of organisations. Dave, were they asked to sign or did they need to contact you? Is there any point in me contacting them now to ask if they would sign the letter?
     
    Hutan, Jul 10, 2018
    #53
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  14. Andy

    Andy Committee Member

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    For some reason we are listed as "Science For Myalgic Encephalomyelitis", I've sent a note asking if this can be amended.

    ETA: Dave has now changed this to read "Science for ME".
     
    Last edited: Jul 10, 2018
    Andy, Jul 10, 2018
    #54
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  15. dave30th

    dave30th Senior Member (Voting Rights)

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    I don't know. Mary was working with the organizations. I assume we didn't know about them--there seem to be a lot of organizations that were not on our master list. sure, contact them, or have them contact me. We can update or repost as needed, I guess, if we get more names.
     
    dave30th, Jul 10, 2018
    #55
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  16. Inara

    Inara Senior Member (Voting Rights)

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    This is so powerful, so many names!
     
    Inara, Jul 10, 2018
    #56
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  17. Medfeb

    Medfeb Senior Member (Voting Rights)

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    I emailed but did not get a reply. Perhaps a bad email. If they send me their email, I'll be glad to update the list
     
    Medfeb, Jul 10, 2018
    #57
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  18. Hutan

    Hutan Moderator Staff Member

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    The ANZMES' email that has worked for me is info@anzmes.org.nz. I see it is the email that appears on their website, so I expect that it is the one you have.

    ETA: Thanks @Medfeb for your work with the signatories. I have emailed ANZMES about this.
     
    Last edited: Jul 10, 2018
    Hutan, Jul 10, 2018
    #58
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  19. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Yes, that's what I have. Thanks for emailing
     
    Medfeb, Jul 10, 2018
    #59
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  20. Hutan

    Hutan Moderator Staff Member

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    All credit to Debbie at ANZMES, she has replied very quickly. This got overlooked but she will be in touch with you @Medfeb.
     
    Hutan, Jul 11, 2018
    #60
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