1. Guest, the 'News in Brief' for the week beginning 18th January 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Dutch journalist asks about pwME's objection to CBT/GET

Discussion in 'General ME/CFS News' started by MSEsperanza, Aug 28, 2018.

  1. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    10,029
    Location:
    betwixt and between
    svetoslav80, Louie41, Barry and 13 others like this.
  2. Andy

    Andy Committee Member & Outreach

    Messages:
    11,764
    Likes Received:
    84,587
    Location:
    Hampshire, UK
    @Grigor ? Though wouldn't surprise me if you are aware of this already.
     
    Louie41, Indigophoton, Hutan and 6 others like this.
  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,269
    Likes Received:
    16,372
    Yes, he's replied.
     
    Louie41, Barry, Indigophoton and 9 others like this.
  4. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    10,029
    Location:
    betwixt and between
    Thank you @Grigor -- your blog might be the most apt answer.
    And thank you @Andy and @adambeyoncelowe for reminding me of @Grigor's blog .
     
    Louie41, Barry, Indigophoton and 7 others like this.
  5. andypants

    andypants Senior Member (Voting Rights)

    Messages:
    1,293
    Likes Received:
    11,597
    Location:
    Norway
    Lisa108, Louie41, MEMarge and 8 others like this.
  6. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

    Messages:
    483
    Likes Received:
    2,938
    They don’t work.

    That’s my objection. Personally I feel it’s a reasonable one.
     
  7. Louie41

    Louie41 Senior Member (Voting Rights)

    Messages:
    732
    Likes Received:
    4,851
    Location:
    upper Midwest US
    That is a succinct and completely comprehensible analysis of what went wrong with PACE, but does anyone know what a "bumf" is?;)
     
  8. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    4,429
    Likes Received:
    33,063
    Location:
    UK
    "bumf" - a document, or collection of, or building full of, documents/paperwork which may, or may not, have relevance, that consequently few people like to read - preferring instead for someone else to do it it and deliver them a short summary.

    Just my understanding of the term, other opinions may be available upon request.
     
    Forestvon, rvallee, EzzieD and 8 others like this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    7,216
    Likes Received:
    42,607
    Location:
    UK West Midlands
    That’s the polite version - it’s short for bum fodder ie toilet paper. In the olden days people used any old waste paper including newspaper
     
  10. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    6,475
    Likes Received:
    42,866
    Indeed. With a bit of string threaded through the corners, hung on the wall. I remember those "olden days"!
     
  11. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    7,216
    Likes Received:
    42,607
    Location:
    UK West Midlands
    Remember this at my grandparents.
    Forgot to mention that I think the term came from Army slang.
     
  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    10,029
    Location:
    betwixt and between
    Just realized that this is a ongoing series of the dutch online journal "de monitor":

    https://demonitor.kro-ncrv.nl/artik...ek-naar-mecvs-door-familieleden-van-patienten


    twitter comments:




    from the google translation:

    The article mentions Ron Davis, Keith Geraghty, Lou Corsius, @Mark Vink (or Marc Vink?), @dave30th , among others. BTW, I think the author got the details about @dave30th's connection to ME a bit wrong.

    Not able to write more ATM

    eta: online "journal" is not the right term, it is a website connected to KRO_NCRV: https://en.wikipedia.org/wiki/KRO-NCRV
     
    Last edited: Aug 30, 2018
  13. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    10,029
    Location:
    betwixt and between


     
  14. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,861
    Likes Received:
    31,680
    That looks pretty bad, and I get a sense that it's going to get worse. Really seems that they've not done any substantial digging into the evidence, and are instead doing a fun story of science vs patient activists.

    It's important that patients are cautious and rigorous in the claims they make, to make this misleading narrative difficult to spin... but Knoop seems to get away with bullshit like his 'strict criterion for recovery' PACE claim, with "the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%". https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60172-4/fulltext

    Any journalist that cites him as a CFS expert and fails to mention this spin is difficult to take seriously.
     
    Maggie, inox, JaimeS and 13 others like this.
  15. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    10,029
    Location:
    betwixt and between
    It got pretty bad already. Sorry, am not able to give a synopsis, but this Dutch series shortly after the Netflix debacle should alert us to seemingly sympathetic journalists.
     
    inox, Lisa108, JaimeS and 6 others like this.
  16. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,861
    Likes Received:
    31,680
    Oh wow - this series really is appalling.

    Here they have Knoop batting away softball questions which are presented as "the most important ten points of criticism of the treatment".

    Did they find a patient foolish enough to list these things as the ten most important points of criticism, or is this just propaganda? Even on the 'recovery' spin, which is important, it's a very soft question and there's no follow-up to Knoop's responses. He's just presented as the expert giving the final word. Pretty shameful stuff.

    https://translate.google.co.uk/translate?sl=auto&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://demonitor.kro-ncrv.nl/artikelen/je-eindigt-niet-in-een-rolstoel-door-gedragstherapie&edit-text=&act=url
     
  17. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    10,029
    Location:
    betwixt and between
    Only slowly I am getting an idea of the structure of "de Monitor":

    (About "de Monitor": https://demonitor.kro-ncrv.nl/over-de-monitor )

    It appears to be a website gathering public input on controversial topics journalists want to investigate and eventually make a film series about. During the process of collecting experiences from the public, they publish articles on the topic (and it seems to me they have the illusion that the truth is to be found just somewehre in the middle of the opposing experiences and information, but I am happy to be proved wrong). Based on both collecting and publishing the collected experiences and information they eventually produce a film series.

    If I understood correctly, the fim series about "Chronically Tired" ( https://demonitor.kro-ncrv.nl/deel-jouw-verhaal/chronisch-vermoeid ) will be broadcasted starting on September 4th. It seems still possible to provide experiences and information: https://demonitor.kro-ncrv.nl/deel-jouw-verhaal/chronisch-vermoeid

    Apologies for giving such fragmented and confusing information. Perhaps I better should trust in our Dutch speaking members, but I am really concerned about the pieces published the last days and how the ME series' structure has been developed so far.

    [ETA: who would like to help me with grammar and wording: the ME series' structure has been developing/ developed? evolving? ...? :confused: ]
     
    Last edited: Sep 1, 2018
    Lisa108, JaimeS, MEMarge and 9 others like this.
  18. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    10,029
    Location:
    betwixt and between
    Carolyn Wilshire replied to De Monitor on Twitter via @Grigor:

    Thank you, @Carolyn Wilshire and @Grigor !
     
    Last edited: Sep 1, 2018
    Atle, Graham, inox and 23 others like this.
  19. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    10,029
    Location:
    betwixt and between
    So they have exposed now the ME sufferer who "gave the direction to their investigation" - as I expected, really very bad:

    De Monitor:
    google translation:
    https://translate.google.com/transl...-tijd-lig-ik-helaas-in-bed&edit-text=&act=url

    https://demonitor.kro-ncrv.nl/artik...min-het-gros-van-de-tijd-lig-ik-helaas-in-bed
     
    Last edited: Sep 1, 2018
  20. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,861
    Likes Received:
    31,680
    I'm not surprised that journalists who were new to the topic would find appealing a patient who was new to the topic and seemed 'open minded'. Unfortunately, this sort of guide is unlikely to be able to dig into all of the details of the evidence in the way that is needed.

    I get the impression that in this coverage we're again seeing the whole psychological vs physical thing works against patients - it's a pointless distraction, and part of a simplistic narrative that many journalists seem to find appealing, but just leads to people rambling on about the need to develop a sophisticated understanding of how mind and body interact.

    Journalists are generally not going to be interested in understanding the complicated legal and financial reasons that classing a health problem as 'psychological' can be problematic. They're more likely to want to virtue signal over their own attitudes toward mental health problems. Whenever debates about ME/CFS are presented in the terms of whether ME/CFS is physical/mental/whatever it seems to make it more difficult for us to get our substantial and legitimate concerns listened to and understood.
     
    Last edited: Sep 1, 2018
    MEMarge, andypants, Hutan and 11 others like this.

Share This Page