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Jen Brea comments on Esther Crawley's behaviour

Discussion in 'General ME/CFS News' started by Alvin, Dec 31, 2017.

  1. Alvin

    Alvin Senior Member (Voting Rights)

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    I've made a practice of not publicly calling out Esther Crawley in part because the issues we face are so much bigger than any one researcher.

    26 tweets
    [​IMG]
    Embed Jennifer Brea @jenbrea Follow Read on Twitter

    And because I think I still entertain a fantasy of one day sitting down to lunch with her and saying, "woman, if you mean as well as you say you do, what on earth are you doing?"

    I'm also uncomfortable with personalizing scientific disagreement. I think good science does eventually win out (even if it takes decades) and that disagreement and radically different POVs are important, constructive, and worth defending.

    But here's the thing – she personalizes her work and the criticisms of it in the media *every single chance she gets.* It's astonishing.

    Rather than defend her work on the merits, or critique her critics on theirs, she constantly seeks to delegitimize them by portraying herself as a victim of harassment, a martyr on the altar of scientific truth.

    And she may genuinely feel harassed and emotionally hurt by the emails and tweets she receives. She may feel bullied. She may deeply believe in the truth of her work and potential to help.

    She may feel besieged. And the psychology of feeling besieged is to triple down on your belief that you are in the right.

    And so the way she has responded to vociferous criticism is on the one hand, only human. And yet I find it completely shocking behavior in a scientist, and even more so in a healer.

    Here's the thing, Esther. I too have been the "victim" of "harassment." I've been called all manner of horrible things, received the most appalling emails, and have been the victim of textbook cyberstalking.

    I am pretty sure I have received as bad or worse. And you know what? ‍♀️
    This is the internet. Humanity in its full diversity and spectrum of personality. And some of the people I've encountered are truly awful. So what?

    I get on with it. I get on with the work because the task of reforming culture, medicine and science so that we can return millions to lives worth living matters more than anything anyone can do to try to hurt me.

    The absolute worst thing you can do in response to ill treatment is to wrap it around yourself like a mantle. Or use it as a cudgel against legitimate critics in the media and on stage to score points with people who don't know better.
    And that is what I see you doing every chance you get.

    I find this even more disturbing than unblinded trials with subjective outcome measures or your complete disinterest in the methods and findings of the biomedical research of the last decade.

    That at least one could confine to the realm of legitimate scientific difference. I'd say you're using an outmoded and weak epistemology. But that's at least a principled argument to have.

    What I cannot abide is the way your response to legitimate criticism *every single time* is to throw a deeply disenfranchised group of disabled people under the bus. It's the ugliest form of punching down I've ever seen.
    You have no problem getting quoted in almost every piece about ME (in which you never fail to talk about "death threats" and harassment).

    And yet you claim you are being silenced.
    You say you are being cyber bullied (in other words, we raise our voices too loudly) AND you claim to be the voice of the "voiceless."

    Every time you are given a platform, you never fail to use it as an opportunity to add to our stigma, to add to our pain, to add to the public perception that there is something different about us as a class of people.

    You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice." You do not need to "provide our voice."

    We have voices and we use them every single day. We are speaking for ourselves *all the time.* The practice I believe you need to cultivate is that of listening. Try taking a media diet for one year. Stop attacking. Stop defending.

    As a curious person, ask yourself, without judgment, why are tens of thousands of people so angry at me? Is there something I can learn from that anger?

    Or at least, engage with your critics in a way that is intellectually curious and rigorous. Hint: the answer to "why unblinded trials and subjective outcome measures" is never "death threats."

    Thanks @Luther Blissett for compiling this post
     
    Maggie, Mark, Esperanza and 61 others like this.
  2. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

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    I'm thinking a campaign around the idea that 'Esther Crawley doesn't speak for ME' might be a good and simple one that could gain traction.
     
    Maggie, Starlight, Esperanza and 36 others like this.
  3. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Agreed.

    I was thinking of a petition for people to sign.

    I am a sufferer of me/cfs, or a sufferer or carer for one.

    I hereby publicly withdraw any consent, explicit or implicitly given for Esther Crawley to speak for me on the topic of me/cfs... blah blah.

    I have noted her constant linking of us with death threats, harrassment etc, ... blah blah. (link to the above tweet thread if given the ok by Jen)

    Mentions of bad science and vulnerable children maybe in the text too?
    I cannot set up a petition for private off site reasons.
     
    Dechi, Sean, Inara and 12 others like this.
  4. Trish

    Trish Senior Member (voting rights)

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    I think if a petition is to be set up it needs to be very carefully worded in consultation with lots of ME patients including internationally. There is a danger that, if it is seen to be simply a personal attack on Crawley, she will use it as further ammunition in her 'everyone is attacking me' narrative.

    Petitions are usually addressed to an organisation and are asking that organisation to make some change - eg petitions to NICE to scrap and re-do guidelines, petitions to funding bodies asking for more biomedical research etc.

    To what organisation would such a petition be addressed, and with what action proposed?

    A petition could, for example, be addressed to Bristol University, requesting that they instruct EC to 'cease and desist' from claiming to speak for ME sufferers, and from accusing us of harassment etc...

    As I say, not against the idea, but it needs to be clear and thoroughly and carefully thought through with a definable and theoretically achievable purpose and written extremely carefully and factually with no emotive language.

    Edit to add. Personally, I'd be more concerned that she be asked to cease and desist from doing crap research. But that's a whole other subject.
     
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Very interesting
    Perhaps an open letter?
    However it will just be ignored but i very much see your point here
    Press release, news article, something with lots of impact?
     
    Last edited: Dec 31, 2017
  6. Joh

    Joh Senior Member (Voting Rights)

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  7. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

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    I'd keep it really simple and send it to TEDx Bristol and Bristol Uni;

    'I am a child with ME/person with ME.
    Esther Crawley does not speak for me or people with ME.
    We have our own voices, we deserve to be heard.
    Esther Crawley seeks to silence us, discredit us, disbelieve us, she lies about us and our advocates - she does not speak for us.
    Esther Crawley speaks for herself, she doesn't speak for ME'
     
    Maggie, MeSci, Dechi and 21 others like this.
  8. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I think we are best served by concentrating on her science first. Disseminating truth about clear provable factual errors and lies such as the mocked up Sunday Times email comes second.

    She absolutely doesn't speak for me, but I'm not really interested in an open letter or petition to say so. I think it could be a distraction and a misuse of energy, and she isn't the only one peddling BPS treatment and conducting and publishing bad science. Perhaps those that act discretely behind the scenes have done/are doing us more harm than the very visible and audible EC.

    I might be persuaded otherwise, but it's unlikely.

    EC is just one element of a bigger picture. As Jen says the issues we face are so much bigger than any one researcher.
     
    Esperanza, MeSci, Barry and 13 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I fully agree with Derya Unutmaz. Jen has shown the sort of understanding of human nature that the so-called professionals seem so sadly to lack.

    I think there is no real need for petitions now. The tide has turned. SMILE is so ludicrous nobody can defend these trials now. There will be some of the same rhetoric for a bit longer but not that much longer.

    Happy New Year!
     
    Maggie, Esperanza, MeSci and 37 others like this.
  10. Barry

    Barry Senior Member (Voting Rights)

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    I agree. I think Jen Brea's tweets are a good example; she very carefully avoids personalising the issues, which is absolutely crucial, both for credibility and us remaining ethical.
     
    Maggie, Esperanza, MeSci and 16 others like this.
  11. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

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    It really troubles me that she still runs a clinic for children with ME and has way too much control over them and their families.
    There was a post by a desperate mother on one of the Tuller blogs that has haunted me. We may be safe from her dire research, but the kids in her clinic aren't safe from her influence.
     
    Maggie, Starlight, Esperanza and 28 others like this.
  12. Barry

    Barry Senior Member (Voting Rights)

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    If she falls from grace due to unethical and flawed research practices involving children, I suspect that may just be a beginning.
     
    Esperanza, EzzieD, Trish and 11 others like this.
  13. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

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    I really hope she falls quickly because her influence to date has been malignant.
     
    Maggie, Starlight, MeSci and 15 others like this.
  14. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I understand that a child is currently under threat of being hospitalised for intensive inpatient treatment. The family are terrified and do not want publicity.

    EC is still an active threat.
     
    Maggie, Esperanza, MeSci and 16 others like this.
  15. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Petitions are usually addressed to someone with the power to stop a certain action.

    I don't want to ask an institution to tell her what to say. That is unethical in my opinion.

    The only person who is is pretending they have my and others consent to speak for me is Esther Crawley.
    She uses this presumed consent to study us, and tell others what 'we' want.

    The action I want stopping in this instance is her speaking for me.
    I only hold her responsible for this action.

    I hold institutions responsible for overlooking and/or ignoring other actions she does, but this 'spokesperson' laundering is hers alone.

    It's an issue that can't be resolved without personalising, but I fully understand why people might not like it.

    If a mass withdrawal of consent is seen as an attack, then that says more about the people who view consent as something that cannot be withdrawn.

    If I was claiming to speak for anyone else and they do not consent to it, I fully expect them to tell me stop.

    I'm fine with telling institutions she doesn't speak for us in addition. But they can just say 'x group' supports her, and wave it away.

    I'm fine if nobody else agrees with my view. I realize that I'm in a minority in most of my views. :D
     
    Snow Leopard, dannybex, Jan and 15 others like this.
  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Brainstorming

    1.Sending a petition to Boards of Trustees of Action for ME and the MEAssociation, asking them to disentangle their organisation from working in a way that supports EC who repeatedly and consistently harangues, demeans and lies about pwme
    As pwme we wish it to be known that EC doesn't speak for us etc

    2.
    complaint to the GMC by petition. There was a case being dealt with just before Xmas 'at the other place' of a child at risk of being removed from home by EC. Mother was terrified.

    ( This is probably the same case)

    Involve GMC by petition but I know they seem to like EC.


    My brain has run out for now.

    Have just briefly read @Luther Blissett post. Crossposted.
     
    MeSci, Sean, sea and 4 others like this.
  17. Skycloud

    Skycloud Senior Member (Voting Rights)

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    She is a danger to children, and the current case is deeply worrying. I still think EC is best countered by adressing her 'science' on which she basis her treatment in her clinic. Parents, understandably, are afraid to come forward publicly against her while their child is still vulnerable.
     
    Esperanza, MeSci, EzzieD and 12 others like this.
  18. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Moderator Staff Member

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    And that is just one family that we know about, there will be more too frightened to even tell friends for fear of care proceedings.
     
    MeSci, EzzieD, Solstice and 8 others like this.
  19. Adrian

    Adrian Senior Member (Voting Rights) Staff Member

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    I would see it differently as a professor at Bristol university she is a senior member of staff and is making statements that are highly related to her professional activity at Bristol. Thus to me she is speaking as a senior employee of Bristol university and hence giving the institutions view.

    At the least Bristol university should be distancing themselves from what she is saying. But I think they should go further and exercise some governance. I see what she is doing as increasing stigma for ME patients and she is doing it as an employee of bristol university and whilst taking government money as wages. As such she should be held to account for her actions.
     
    MeSci, EzzieD, MEMarge and 11 others like this.
  20. Webdog

    Webdog Senior Member (Voting Rights)

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    The debate has already been elevated from a patients vs. Crawley debate to a scientists vs. Crawley one. This is where the discussion needs to be.

    I'd rather give a small donation to David Tuller than sign a petition.

    Disclaimer: I have no children and don't live in the UK.
     

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