Cochrane ME/CFS GET review temporarily withdrawn

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Trish, Oct 17, 2018.

  1. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    4,171
    Location:
    UK
    Clare Gerada: "As long as you take full accountability when things go wrong."

    Just like the PACE crew have, obviously.
     
    Woolie, Jan, Lisa108 and 24 others like this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,633
    Can someone who tweets reply to Clare Gerada’s tweet at 9.14 this morning.

    ETA: you got there first @Sasha .
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,395
    Location:
    London, UK
    'Problem at present is that pick &
    Mix. Which is confusing - creates anxiety amongst carers and risks to all.'

    Oh Dear, Dr Gerada, now we can see that you are just a religious believer in authority after all, not a critical scientist. People deserve to be treated with more respect - especially people from Yorkshire.
     
    sea, CFS_for_19_years, Jan and 21 others like this.
  4. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    4,171
    Location:
    UK
    No I didn't, I'm not on Twitter. :)

    Just on Witter.
     
  5. Trish

    Trish Moderator Staff Member

    Messages:
    55,952
    Location:
    UK
    I hope someone will tweet @Jonathan Edwards messages to Clare Gerada. I don't think I should as I'm already involved in the conversation with her. And I don't know how to copy posts into tweets!
     
  6. Daisymay

    Daisymay Senior Member (Voting Rights)

    Messages:
    687
    Clare Gerada tweeted:

    "As long as you take full accountability when things go wrong. You can’t have authority without accountability."

    So true, hopefully the day will come when all who have for decades made their careers on the back of seriously ill ME patients, will be held accountable.
     
    Woolie, Joh, Milo and 24 others like this.
  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,633
    That tweet by Clare Gerada is priceless.
     
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,645
    Location:
    Norway
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,645
    Location:
    Norway
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,656
    Or are they a "PITA" couple? I will leave you all to guess the acronym!
     
    ladycatlover likes this.
  11. Nellie

    Nellie Senior Member (Voting Rights)

    Messages:
    250
    Location:
    UK
    Would being married to SW constitute a COI?
     
    Joh, Milo, Invisible Woman and 10 others like this.
  12. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    I'm losing the plot here. Why does Clare Gerada need to treat her husband with more respect? What do you know that we don't? Better not answer that
     
  13. Sean

    Sean Moderator Staff Member

    Messages:
    8,228
    Location:
    Australia
    You have not thought those statements through, have you, Ms Gerada?
     
  14. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,446
    I think the unexpressed statement behind patients having a COI is that patients are receiving disability benefits and do not want to be cured.
     
    Woolie, Pechius, Milo and 16 others like this.
  15. obeat

    obeat Senior Member (Voting Rights)

    Messages:
    714
    What does she think of e.g. the breast cancer lobby groups? Or does it depend on which lobby group you are? Why call them unrepresentative, when the NICE guidelines committee 2007 was unrepresentative?
     
    Woolie, Milo, Peter Trewhitt and 10 others like this.
  16. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    It may be that, in part, but it possibly also goes back to the David, Wessely and Pelosi paper in (edit 1988) when this view was also expressed, blaming, if I remember, the close personal involvement with the outcome.

    It was interesting that Mowbray also expressed the opinion that sufferers should not be involved in research but for the completely different, and understandable, reason that research is long, hard and painstaking and may tax their capacities.
     
  17. Londinium

    Londinium Senior Member (Voting Rights)

    Messages:
    270
    I massively agree - the point here is not around whether ME/CFS is a physical or mental condition (and if, as I think most likely, it turns out to be neuroimmune, which of those categories would you use?). It's that even if ME/CFS were shown to be a mental illness, GET still wouldn't be an effective intervention. Getting into an all-in-the-head vs all-in-the-blood debate detracts from that key fact.
     
  18. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    4,083
    Location:
    Belgium
    I want to come back to the Reuters news article. On twitter Adam Lowe gave some interesting insight into the reporter Kate Kelland. Apparently she has a track record of industry-biased reporting (https://usrtk.org/our-investigations/acc_loves_katekelland/) In an article about her reporting on glyphosate, Fair.org (https://fair.org/home/reuters-vs-un-cancer-agency-are-corporate-ties-influencing-science-coverage/) noted: “

    “Raising further questions about her objectivity as a science reporter are Kelland’s ties to the Science Media Centre (SMC), a controversial nonprofit PR agency in the UK that connects scientists with reporters, and gets its largest block of funding from industry groups and companies, including chemical industry interests.

    SMC, which has been called “science’s PR agency,” launched in 2002 partly as an effort to tamp down news stories driven by groups like Greenpeace and Friends of the Earth, according to its founding report. SMC has been accused of playing down the environmental and human health risks of some controversial products and technologies, according to multiple researchers who have studied the group.

    Kelland’s bias in favor of the group is evident, as she appears in the SMC promotional video and the SMC promotional report, regularly attends SMC briefings, speaks at SMC workshops and attended meetings in India to discuss setting up an SMC office there.”

    So I guess that it was no coincidence that she got hold of the internal emails and the scoop. I suspect that the proponents of the Larun review wanted to break the news story, so they could control its (initial) framing.
     
    Woolie, MSEsperanza, Jan and 27 others like this.
  19. mango

    mango Senior Member (Voting Rights)

    Messages:
    2,831
    Great comment by Jörgen Jelstad on Facebook (in Norwegian)

     
    Marit @memhj, Woolie, Hutan and 8 others like this.
  20. Stewart

    Stewart Senior Member (Voting Rights)

    Messages:
    238
    I'm sure they did. And I'm sure that Gerada, Sharpe et al are tweeting about it this morning to try and create a sense of 'outrage' amongst the scientific community so they can discredit this decision by Cochrane. It'll be interesting to see how much traction their version of the narrative gets, and who else (apart from the decreasing number of usual suspects) is willing to stand alongside them.
     
    Woolie, sea, Joh and 20 others like this.

Share This Page