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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


     
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  3. Valentijn

    Valentijn Moderator Staff Member

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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 Established Member

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  5. Kalliope

    Kalliope Established 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.
     
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  8. Alvin

    Alvin Senior Member (Voting Rights)

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

    inox New 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. Jo Best

    Jo Best Established 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
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  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    But I don't think the BPSers regard 'the militants' as PWME.

    According to them it's not the patients, but a small group of vocal militants..........I read somewhere that one of them even said that 'a number of these militants don't even have ME and only do what they do for a sense of belonging/fighting for a cause'. (paraphrased from memory).

    So I think maybe showing the support PWME have for biomedical research might be a better illustration of contrast in attitude....................although then they will say.....these poor misguided souls are desperate for proof it's not all in their heads.......so maybe not.(?)

    :unsure:
     

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