Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

PACE trial re-analysis: Dr Janes Le Fanu in the Daily Telegraph (UK)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 17, 2016.

  1. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,121
    Likes:
    14,443
  2. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    Because it's in the Telegraph. :)
     
  3. Molly98

    Molly98 Senior Member

    Messages:
    416
    Likes:
    3,762
    I find this interpretation very odd. Good that the issue is raised regarding PACE but linking it to Gove is bizarre. If the experts - the scientists who produce proper bio research were listed to and the facts regarded instead of swept under the carpet because they don't fit with the BPS theory of the world, we might have proper treatment and at least treated as human beings suffering from a debilitating disease.

    Gove inflicted his distorted personal view of what education should be on to the teaching profession with no regard for their expertise and experience, with no insight other than his own narrow subjective experience of education, he is known for being a zealot, stubborn and bloody minded in forcing his values and beliefs on others, to me the comparison should be that White and Crawley are exactly like Gove willfully refusing to listen to experts and scientific evidence which may be contrary to or threatened the belief system which they have built the world, careers and egos around, and absolutely no regard for the suffering caused in doing so.

    MY GOD HOW I WISH PROFESSIONAL WOULD LISTEN TO EXPERTS, REAL experts not a group of psycho babblers who produce a theory according to their dogmatic beliefs system and refuse any evidence that may challenge it. Clever persuasion, clever marketing, having the gift of the gab , the ability to be quite cunning, devious and ruthless, and the right contacts appears to have far more influence than facts.

    I just hope and pray the tide is turning
     
    Last edited by a moderator: Oct 20, 2016
  4. Sasha

    Sasha Fine, thank you

    Messages:
    12,756
    Likes:
    33,927
    UK
    The conclusions about Gove may be odd but the thrust of the PACE coverage - that patients have got to the bottom of something rotten about the recovery analyses and that the trial is worthless - is spot on.
     
  5. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    Gove may not be right, but his wife certainly is:
    [​IMG]
    That is who I want on our side.
     
  6. Cheesus

    Cheesus Senior Member

    Messages:
    1,131
    Likes:
    4,587
    UK
    At first I thought you were talking about the dog, but the reality was much more surreal.
     
  7. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    Who says I'm not?!?!?
     
  8. Hip

    Hip Senior Member

    Messages:
    8,877
    Likes:
    13,102
    That article on dog language is interesting. I like the way they decode the meaning of dog bark types in the violet box at the bottom of this page.
     
  9. eafw

    eafw Senior Member

    Messages:
    816
    Likes:
    3,381
    UK
    Both Gove and Fanu fail to make the distinction between actual experts: people who do know what they are talking about, and "experts": people in a position of power who will say anything to further their own career.

    Gove (and most political propagandists) object to people who know better than them, that makes their stance very different from those of us that welcome genuine knowledge and informed analysis.
     
    Jan, flybro, Luther Blissett and 8 others like this.
  10. Esther12

    Esther12 Senior Member

    Messages:
    8,226
    Likes:
    26,344
    But how are people meant to do this? The systems by which 'experts' are identified within the UK has been corrupted, and so identifying the 'actual' experts now requires work and expertise many do not apply.

    Tying these concerns to the Gove quote, which itself seemed to reflect Gove's desire to avoid inconvenient truths, isn't really helpful for us, and to me, it seems that people in the UK still want to go on blindly trusting experts who mislead them, but I do think that there are legitimate concerns about the UK's 'expert class' that the PACE trial does a good job of illustrating.
     
  11. Barry53

    Barry53 Senior Member

    Messages:
    1,971
    Likes:
    11,214
    UK
    For the moment at least, getting the story into the mainstream news is good. Steadily ramps up the pressure, which is what is needed.
     
    Jan, Webdog, ukxmrv and 3 others like this.
  12. Barry53

    Barry53 Senior Member

    Messages:
    1,971
    Likes:
    11,214
    UK
    I (half) seriously feel that people undertaking such a huge public responsibility should be subject to a personality profile first. Anyone whose ego/narcissism exceeds their integrity and professionalism should be excluded. But then of course there are the politicians to consider ... :(.
     
    Jan, flybro and Luther Blissett like this.
  13. Esther12

    Esther12 Senior Member

    Messages:
    8,226
    Likes:
    26,344
    Which expert would you trust to assess the personalities of those who want to be considered 'experts'?!
     
  14. Barry53

    Barry53 Senior Member

    Messages:
    1,971
    Likes:
    11,214
    UK
    I would rephrase as "Which track-proven professional would you trust to assess the personalities of those who want to be considered 'experts'?!"
     
    flybro and Luther Blissett like this.
  15. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    Oh, is that Barton, whining for money again? I thought it was the sound of a particularly insistent baby crying...
    http://www.telegraph.co.uk/opinion/...nt-now-has-time-to-give-airport-policy-a-rad/
     
    Wildcat, flybro and Esther12 like this.
  16. Esther12

    Esther12 Senior Member

    Messages:
    8,226
    Likes:
    26,344
    Colin Barton is not sick of blind faith in 'experts'.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member

    Messages:
    5,019
    Likes:
    29,076
    I missed this, which is a bit surreal because I remember only a couple of weeks ago a friend asking me 'wouldn't that Farnoo friend of yours write something on this' to which i think I replied that James was his own boss on these things but would no doubt chime in if it suited him.

    I have to declare an interest because James (whom I have always, rightly or wrongly called 'Leffanew') and I go back to 1968 as students and he has bought me lunch and probably dinner on occasion. I must remind him it is time ... that nice place off the Aldwych maybe.

    So was I the 'expert' or the anti-expert? Irony is part of James's stock in trade but I hope I was the latter.
     
    Last edited by a moderator: Oct 20, 2016
    ahimsa, mango, J.G and 4 others like this.
  18. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,656
    .
    .
    Colin Barton (author of the letter to the Telegraph) ... http://www.telegraph.co.uk/opinion/...nt-now-has-time-to-give-airport-policy-a-rad/ ....
    ...is the long term Chair of the Sussex and Kent CFS Society - that group/charity has always promoted psychosocial doctors/researchers, therapies and practices, including actively aiding Peter White.
    Drs Esther Crawley
    and Alistair Miller are Sussex Society Medical Advisors.
    http://measussex.org.uk/about-us/medical-advisors/
    .
    .
    .
    Colin Barton strongly supports the fatigue clinics, and his Sussex group has a long term and very strong alliance with AFME and AYME. Mr Barton's letter is in defence of the fatigue clinics, disengenously disguising his support for maintaining the status quo of psychosocial services in the UK.

    .

    Professor Esther Crawley:
    "What a wonderful achievement! Congratulations to the Sussex and Kent ME Society on your 25th birthday. You have done such a wonderful job helping patients, engaging with services and supporting research. I hope that by continuing to work together, we can really make a difference to patients and their families in the next 25 years."


    Mary Jane Willows (AYME CEO):
    "AYME will continue to work alongside you in the journey towards achieving proper recognition and diagnosis of the condition, sensitive and supportive treatment in health, education and social care and extensive research and development into useful therapies for all those affected."
    http://measussex.org.uk/about-us/29-years-of-caring/

    .
    .
    Its impossible to know if its actually the ME patients of Sussex and Kent who support the nonsense of the clinics/Crawley, AFME and AYME .... or if its Mr Colin Barton, who calls all the shots, as he controls the Sussex Group/charity, and has done for decades. The actual patients don't get a word in edgeways, unless they agree with the controllers of the Sussex and Kent Society.
    .
    .

    .
    ,
     
    Last edited: Oct 20, 2016
    Jan and Kati like this.

See more popular forum discussions.

Share This Page