Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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James Coyne standing up for pts with ME like no one else

Discussion in 'General ME/CFS News' started by Kati, Jan 29, 2016.

  1. Kati

    Kati Patient in training

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    This:

    [​IMG] James C.Coyne (@CoyneoftheRealm)
    2016-01-29, 3:09 PM
    Leading trolls? Really, I was just standing up to @KingsCollegeLon and @WesselyS and people got behind me. youtube.com/watch?v=YeFzeN…




    And this:

    [​IMG] James C.Coyne (@CoyneoftheRealm)
    2016-01-29, 7:36 AM
    Educative experience for me to see how I'm treated by Brit academics who were my friends until I criticized PACE. twitter.com/MEMilitant1/st…

    If you want to help, like and retweet James's posts. Comment on his blog posts, go on facebook and share his stuff. He is working on a new blogpost about PACE trial.
     
    Last edited: Jan 29, 2016
    justy, Yogi, Valentijn and 24 others like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    The most effective retweeting is when you use a specific twitter handle of the person you wish to see the comment.
    Otherwise we are mostly retweeting to the choir.
    Put a period (.) in front and everyone will see the tweet along with the specific person.
     
    Mel9, Invisible Woman, Woolie and 2 others like this.
  3. Esther12

    Esther12 Senior Member

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    Great to see. Very grateful to Prof Coyne.

    Also though, someone like David Tuller put in masses of work on his PACE articles. I can totally take for granted @Jonathan Edwards contribution as he posts here so regularly he just feels like another member of the forum... we're lucky to have a growing number of strong advocates from outside of the patient community who have been willing to work on our behalf. Don't mean this to sound remotely churlish in a thread on Coyne, but also don't want people to get the impression that Coyne is unique in standing up for us.
     
    Last edited: Jan 29, 2016
    MEMum, PatJ, rebar and 22 others like this.
  4. Kati

    Kati Patient in training

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    Yes and no. It depends who your audience is, who your followers are..it is best to expand your horizons and follow, be follwed by politicians, wider health care audience, professors, and so on.
     
    mango, beaker, Effi and 1 other person like this.
  5. Kati

    Kati Patient in training

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    At this point, work from all kinds of background, in all kinds of ways is much appreciated.
     
  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    It's easy for someone to follow and then mute your tweets when what they want is for you to follow them.
    Hard to know if this happens but I wonder.
    I haven't been able to get politicians and people in health care to follow me.
    I do however have other interests and get followers from there.

    But from what I can tell many of us have a limited ability to gain a lot of followers outside the community and in most part I was thinking of people who don't really want to hear from us or sometimes a well placed tweet to a media agency.
     
    Woolie and barbc56 like this.
  7. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    facebooked.
     
    barbc56, rosie26 and Kati like this.
  8. Kati

    Kati Patient in training

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    'Building an audience' takes time, patience and retweeting other people's tweets, and engaging with them. Attending tweetchats pertaining to health care can be very valuable and help engaging with the wider community. there is a spooniechat, rheum chat, health care social media chat, health care leader chat. Participate and engage others, and perhaps friend people with whom you connected a bit or you'd like to follow because you liked what they had to say. You never know in which way these folks could be helpful.
     
    MEMum and barbc56 like this.
  9. Kati

    Kati Patient in training

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    more good tweets from James:

    [​IMG] James C.Coyne (@CoyneoftheRealm)
    2016-01-28, 3:08 AM
    Someday I must write about abuse scientists suffer when they challenge dodgy PACE study. For now, all I want is @PLOSONE PACE data.
     
    Mary, PennyIA, MEMum and 19 others like this.
  10. jimells

    jimells Senior Member

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    I have a feeling that the more they abuse him, the more he will challenge them.

    Go Dr Coyne!
     
    MEMum, PennyIA, justy and 9 others like this.
  11. A.B.

    A.B. Senior Member

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    Why is the psychology and psychiatry establishment (largely) failing to challenge the Wessely school and its bad science?

    1. Is it that they don't reading the studies, know nothing about the topic, and just take Wessely school's word that PACE is one of the most beautiful behavioural trials ever?

    2. Is it because there is a critical mass of incompetence?

    3. Is it because there is a culture of fraud that the establishment doesn't want to change? With the thinking being that if PACE goes down, other studies will also quickly go down?

    4. Is it because voicing criticism has serious consequences for one's career?

    5. Is it because the UK is small and everyone with remote interest in the topic is in the same circle of friends?
     
    Last edited: Jan 30, 2016
    MEMum, Roseblossom, PennyIA and 10 others like this.
  12. Kati

    Kati Patient in training

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    Or maybe is it because of the open and covered power that the british psych lobby has?
     
    mango likes this.
  13. John Mac

    John Mac Senior Member

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    A huge chunk of no. 5
    A dollop of no. 4
    and a bit of no.1
     
    MEMum, Mel9, GreyOwl and 1 other person like this.
  14. jimells

    jimells Senior Member

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    6. Degrees are extremely expensive and the only way out of debt servitude is to keep one's head down and hope for the best.
     
  15. sarah darwins

    sarah darwins I told you I was ill

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    @A.B. - follow the money ...

    I was trying to find out how many CBT practitioners there are in the UK the other day (surely more per capita than anywhere else on earth). Couldn't find out, but found an interesting article in the Mail from 2006 that gives a hint. It was written at the time when Tony Blair's "Happiness Tsar" Richard Layard (now Baron Layard, don't ya know) was almost fanatically rolling out CBT like there was no tomorrow. His plan was to train 10,000 CBT-oids.

    I don't know how far that got, but I do know the British Association for Behavioural and Cognitive Psychotherapies claims more than 10,000 members — and that's a professional body for those who want or require accreditation. That wouldn't scratch the surface of all those who have had CBT training of some sort.

    http://www.dailymail.co.uk/health/article-412252/Therapy-NHS-What-crazy-waste-600-million.html

    The Mail were estimating £600 million for CBT services in 2006 (call it a round billion dollars).
     
    moosie, Valentijn, A.B. and 7 others like this.
  16. adreno

    adreno PR activist

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    Lol
     
  17. sarah darwins

    sarah darwins I told you I was ill

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    On reflection, CBT-bots is catchier!
     
    MEMum, rosie26 and jimells like this.
  18. jimells

    jimells Senior Member

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    It certainly conjures up scary images - an army of zombie therapists led by Sir Simon :eek:
     
    mango and sarah darwins like this.
  19. SOC

    SOC Senior Member

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    Resistance is futile.
     
    leela and sarah darwins like this.
  20. beaker

    beaker ME/cfs 1986

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    "FOLLOW THE MONEY"

    Reminder : It's not just the money for CBT, it's the research money.
    And what I wonder most about is all that Disability Co. (Unum and Swiss something ) money for being their advisors. That seems the shadiest and where the most money is to lose, so the biggest source of corruption ?
    Not trying to get all conspiracy theory on you. But we already know the UK Wessley/Sharpe cohort have been ( are still? ) getting paid as consultants.
     
    Roseblossom and jimells like this.

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