May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

Dutch ME/CFS survey 2016 (600 patients)

Discussion in 'Latest ME/CFS Research' started by Effi, Sep 14, 2016.

  1. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,558
    Europe
    [Not sure if this is the right subforum, as it is technically not a scientific study.]
    http://www.me-cvsvereniging.nl/sites/default/files/Rapport.pdf
    I haven't read it yet (it's 50 pages), but Frank Twisk posted this overview of the results regarding CBT/GET vs pacing etc.
    [​IMG]

    A Dutch newspaper already reacted to the results of this survey. It starts out ok, but as per usual they give the BPS crew ample opportunity to deny everything...
    http://www.trouw.nl/tr/nl/39681/nbs...eniging-ME-CVS-raadt-gedragstherapie-af.dhtml
    (I tried to create a Google Translate link, but their web cookies are too persistent...)
     
    Last edited: Sep 14, 2016
  2. worldbackwards

    worldbackwards Senior Member

    Messages:
    2,051
    Likes:
    10,246
    It's amazing how patients say these things time and again. You might even think it was true.
     
    Grigor, Izola, Chezboo and 17 others like this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,530
    Oh-oh Knoop... the real PACE primary outcomes are out now, you know?
     
    Snow Leopard, Sea, Chezboo and 11 others like this.
  4. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,558
    Europe
    Google translated his name as Button (which is knoop in Dutch). I was tempted to leave it that way. ;)

    It's incredible how they keep repeating that same message, regardless of what's been happening around them...
     
    Webdog, ahmo, Mel9 and 7 others like this.
  5. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,478
    Likes:
    10,521
    Cornwall, UK
    Yes. We'll have to hope the reality is going to take a while to filter through. Clearly PACE is still widely perceived as an exemplary trial.

    Somebody tell Button/Knoop that, as I might have suggested elsewhere, this is an ex-trial. It is deceased. Gone to meet its maker ...
     
    actup, Mel9, Solstice and 2 others like this.
  6. Gijs

    Gijs Senior Member

    Messages:
    653
    Likes:
    1,333
    CBT is religion! You will cure when you believe! Maybe Wessely, White, Chalder , Knoop and Blijenberg can open a church for us.
     
    PhoenixDown, actup, Jan and 9 others like this.
  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,236
    Likes:
    4,588
    "But CBT won`t work if you have a negative attitude"...

    Nice and big survey though.

    Too bad it`s a conspiracy by the patients:whistle:
     
    actup, Webdog, Hutan and 5 others like this.
  8. worldbackwards

    worldbackwards Senior Member

    Messages:
    2,051
    Likes:
    10,246
    [​IMG]
     
    Paintmyturquoise, actup, Jan and 8 others like this.
  9. NL93

    NL93 Senior Member

    Messages:
    146
    Likes:
    877
    The Netherlands
    This was covered in quite a few newspapers. A lot just reported the results of the survey, in a normal objective way, but the one with Knoop (Button :whistle:) wasn't too good. Still claiming half of his patients have some benefit from it.
    But oh well, what else can he say? Same problem with Sharpe/Chalder etc, they build their entire careers around treating ME with CBT, of course they'll keep pretending it works. Admitting it doesn't cure anyone is admitting their entire careers have been one big joke, and they wasted millions of euros offering treatments that have no effect.
     
    actup, Jan, Sea and 11 others like this.
  10. worldbackwards

    worldbackwards Senior Member

    Messages:
    2,051
    Likes:
    10,246
    This is my best post ever.
     
    cman89 likes this.
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,893
    Totally photoshopped :cool:
     
    sarah darwins likes this.
  12. worldbackwards

    worldbackwards Senior Member

    Messages:
    2,051
    Likes:
    10,246
    He just needed the right number of treatments. If you don't believe, you'll never understand...
     
  13. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,285
    Likes:
    5,674
    USA
    the truth.jpg
     
    actup, Jan, Mel9 and 4 others like this.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    12,073
    Likes:
    13,160
    Sth Australia
    "Of those patients only 7 (3,17%) reported benefits,
    while 140 respondents (63,35%) experienced
    a (very) negative effect on their health status. "

    It sounds like he'd far prefer to help that 17% while not caring at all about the 35% being harmed. This is so illogical.

    or does he just think most ME/CFS people are telling lies about it making them worst. I wonder what his explanation is of so many voting it has a negative affect. I wonder if he has considered that possibly many of his patients are stopping treatment not cause they've improved but cause it wasnt helping or making them worst?

    or maybe he's put the blame game onto them and they've stopped telling him what is truely going on eg if you dont improve you need to try harder.

    One of my CFS doctors, I got worst and couldnt get back to him any more.. he took the fact that I stopped making appointments with him that I'd recovered. (I only found this out years later when I finally got well enough to go able to get back to him and he was so surprised to see me as he thought I had recovered).

    seriously, when will these doctors wake up to what is going on.
     
    Last edited: Sep 15, 2016
  15. Solstice

    Solstice Senior Member

    Messages:
    641
    Likes:
    2,115
    Any more links would be hugely appreciated. I'll do a bit of a search myself too. Maybe my local paper even published it.
     
  16. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,558
    Europe
  17. Solstice

    Solstice Senior Member

    Messages:
    641
    Likes:
    2,115
    Thank you, were I have the option to comment I will. And i'll try to get it admitted to fok.nl. Don't have too high hopes for that though as they rejected my last article about the naviaux study.

    Don't see an option at the RD. And the e-magazine for GP's is making me pay 25 bucks. I've submitted the one from the RD (best one imo) to fok.nl. Responded on several of the others.
     
    Last edited: Sep 15, 2016
    NL93, Marc_NL and Effi like this.
  18. Sea

    Sea Senior Member

    Messages:
    1,285
    Likes:
    2,724
    NSW Australia
    Actually the figures are worse than that. Those commas should be decimal points. So it's 3.17% positive response and 63.35% negative.

    His explanation is that patients are wrongly convinced by ME associations and forums that CBT/GET is harmful.
     
  19. BruceInOz

    BruceInOz Senior Member

    Messages:
    172
    Likes:
    1,003
    Tasmania
    And this would have come from those studies that show association between CFS association/forum membership and severity, where, once again, the causation is assumed to go the way the researchers want it to without any evidence. The possibility that those more severe go looking for solutions from others in a similar predicament just never occurs to them!
     
  20. eastcoast12

    eastcoast12 Senior Member

    Messages:
    136
    Likes:
    401
    Long Island ny
    I haven't read that study yet.
    Let me log on to QMUL website site to read it. Be right back.
     
    Paintmyturquoise likes this.

See more popular forum discussions.

Share This Page