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Quotes from scientists who appreciate the support of PWME

Discussion in 'Advocacy Projects and Campaigns' started by Sasha, Nov 20, 2017.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    While the UK BPS school seem to push a narrative of vexatious, dangerous patients, other scientists have praised PWME for their support.

    I thought it would be useful to collect those quotations - not least so that people can tweet them in response to the other narrative - but I can't remember where I've seen them! Pretty sure that some of the most recent came out of one of the recent Stanford meetings but I don't know where a link would be.

    Anybody?
     
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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    This, for example:

    Code:
    https://twitter.com/Derya_/status/921840554547335168


     
  3. Valentijn

    Valentijn Not a moderator

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    I think @Jonathan Edwards says we're awesome from time to time. Maybe he's got a good quote already, or would like to come up with a new one :emoji_smirk:
     
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  4. Joh

    Joh Senior Member (Voting Rights)

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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Norwegian paediatrician professor Kristian Sommerfelt described his young ME-patients as incredibly brave.

    Maybe a tad off-thread but I also really liked it when doctor Katarina Lien (doing a PhD on ME and exercise) introduced herself in a lecture with: I am an ME-researcher, and proud of it!
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    @Phoebe lists some good quotes on her blog at https://puffinsandpenguins.wordpress.com/2017/01/20/post-nine-why-i-write-this-blog/
     
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  7. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks, guys, but can I please bring the thread back to its topic, which is: quotes from scientists who are expressing appreciation for the support that they get from PWME.

    The point is to gather such quotes to contest the narrative that PWME are regarded fearfully by scientists.
     
  8. Alvin

    Alvin Senior Member (Voting Rights)

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    But we already know we are awesome :emoji_bow:
     
  9. inox

    inox Established Member

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    Katarina Lien mentioned above, said this in a speach thanking for a donation towards research - may 10th this year. She is truly disharted over the narrative about "militant angry ME activist", and do what she can to help the situation, engange with other doctors/researchers with a psycosomatic view, are a member of the largest norwegian facebook group for patients/carers etc.

    (translated via google - and sorry about my bad english :) )

    "It is rewarding to work with ME patients. It is not an unhappy and difficult group, all they ask is to be met in the same way as all other patients, and all other people are met to be seen, heard, believed. None of you expect me to do miracles when I have you at the doctor's office, and we who work with ME, we think there are striking many who thank us afterwards, with flowers and tears in your eyes just because we've behaved normally. With common decency. That we have treated people properly. Because it is obviously still a shortcoming for ME patients, and I think it's sad, and that's what drives many of us researching this to work on. I was very touched, thank you very much."

    http://www.serendipitycat.no/2017/0...me-pasienter-sier-lege-forsker-katarina-lien/
     
    Last edited: Nov 21, 2017
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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  11. Awol

    Awol Senior Member (Voting Rights)

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    Good idea Sasha :thumbup: Simon Carding said to the BBC Look East TV journalists in January 2017 (will listen again to get the actual quote) something like "None of this would be possible without the patients". The report is on youtube in two parts as the late evening news edition included a studio interview and the links are here: http://www.investinme.org/IIME-Newslet-1701-02.shtml

    ETA: The quote is from the studio interview.

    “We would not be doing what we're doing today if it weren't for the money that's produced by, or offered by, the patients themselves so it's entirely their efforts in raising funds that's allowed us to get to this point now”.

    Professor Simon Carding on BBC Look East TV 28th January 2017.

    (Btw off-topic of this thread, but there's currently £150 left up for grabs from a matching donation offer in November for anyone wishing to donate to support this work - https://www.justgiving.com/fundraising/nomenbar4me)
     
    Last edited: Nov 21, 2017
  12. inox

    inox Established Member

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    This enitre post by Leonard Jason, reflecting on how input from the patient community has guided his work over decades, and made it better - ending with:

     
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  13. Valentijn

    Valentijn Not a moderator

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    Still sounding rather passive aggressive - the implication is that patients can't possibly do as good as job describing PEM as he supposedly has, and he's looking forward to eventually claiming that any such instrument is inferior to the PEM questions on his.
     
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  14. Forbin

    Forbin Senior Member (Voting Rights)

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    When Vanessa Li passed away, the team at Columbia's Center for Infection and Immunity (Lipkin, Hornig, et al.) said that they were dedicating their 2015 cytokine paper to her. She had led the patient fund raising campaign for them.
     
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  15. inox

    inox Established Member

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    Avindra Nath:

    https://www.medpagetoday.com/neurology/generalneurology/71257
     
  16. TiredSam

    TiredSam Moderator Staff Member

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    Diamond geezer.
     
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  17. Evergreen

    Evergreen Established Member (Voting Rights)

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    How about this one:

    In case the tweet doesn't show, it's Carolyn Wilshire saying:

    "Keeping a copy of this awful tweet, which capitalises on a tragedy to criticise CFS patients' 'intense negativity'. [See tweet by Henrik Vogt, to which Carolyn is referring.] I think they may be negative towards YOU Henrik, they are lovely to me. And as a group, they are extraordinarily reslient and optimistic, despite tweets like this!"
     
  18. inox

    inox Established Member

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    Sorry, I've got no idea what this means? :)
     
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  19. TiredSam

    TiredSam Moderator Staff Member

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  20. inox

    inox Established Member

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    TiredSam likes this.

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