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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Dutch fatigue scientists getting worried

Discussion in 'General ME/CFS News' started by Lou Corsius, Oct 3, 2017.

  1. Lou Corsius

    Lou Corsius

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    The Netherlands
    Just after an impressive interview with Mark Vink had been published in De Volkskrant (one of our national newspapers) prof. Gijs Bleijenberg published a mailing to the press stating the following:

    Cognitive behavioural therapy is still an effective treatment, even the preferential treatment for chronic fatigue syndrome
    Gijs Bleijenberg (emeritus professor at the Radboudmc and former head of the Dutch Expert Centre for Chronic Fatigue
    At the moment of my writing there is much debate about the PACE-trial, a study from 2011 published in the Lancet regarding the effectiveness of cognitive behavioural therapy (cbt) for cfs/ME patients. The authors concluded that cbt lead to decreased levels of fatigue and all over improvement of well being. Based on a supplementary analysis they concluded that a subgroup of patients made a full recovery from chronic fatigue syndrome. Not everybody endorses these conclusions, however their objections are mostly baseless.
    (Meta)analysis
    The effectiveness of a treatment for a particular disease can not be concluded based on a single study. Multiple, carefully controlled impact studies, that point in the same direction, have to be carried out. Several meta-analyses have been in published in peer-reviewed magazines, that subscribe the effectiveness of cbt for cfs/ME patients by analyzing multiple studies. These meta-analyses concluded that cbt lead to a decrease in fatigue and disabilities in cfs/ME patients (Castell et al, 2011; Malouff et al 2008; Price et al, 2008).
    Since the latest meta-analysis new impact studies haven arisen. All these studies, exempt one, show a positive effect of cbt on fatigue and disabilities. The prevailing guideline in The Netherlands, drawn up by various professional associations including the VGCt, subscribe to cbt being the number one treatment for cfs/ME in The Netherlands. The debate regarding the PACE trial has not affected this guideline.
    Positive effects of cbt
    The protocol used in The Netherlands was developed by the Dutch expert centre for chronic fatigue (NKCV, www.nkcv.nl; Knoop and Bleijenberg, 2010). The NKVC reviewed the effects of this treatment on adolescents with cfs (individual face-to-face therapy and online cbt) and on adults (individual therapy, group therapy, instructed self-treatment, stepped care and internet therapy) with several randomized and controlled trials.
    One controlled, non-randomized study showed no effect of cbt as a group therapy. Six other randomized controlled trials showed a positive effect of cbt on fatigue and disabilities (see references). One subgroup of patients completely recovers from cfs, the majority benefits from it. A seventh study, a study measuring the effect of internet cbt on adults, has been completed. The results of this study will be announced in the near future.
    Three Dutch implementation studies were published, including a randomized controlled trial, that show cbt for cfs/ME can be effectively administered in the mainstream mental health care, outside of a specialized treatment center for fatigue.
    It is difficult to imagine how people can conclude cbt for cfs/ME is in fact not effective.
    References
    Castell BD, Kazantzis N, Moss-Morris RE. Cognitive Behavioral Therapy and Graded Exercise forChronic Fatigue Syndrome: A Meta-Analysis. Clin Psychol Sci Prac 18:
    311–324, 2011
    Knoop H, Bleijenberg G. Het chronisch vermoeidheidssyndroom: behandelprotocol cognitieve gedragstherapie voor CVS. Houten: Bohn, Stafleu en van Loghum 2010
    Malouff JM, Thorsteinsson EB, Rooke SE, Bhullar, N, Schutte NS: Efficacy of cognitive behavioral therapy for chronic fatigue syndrome: A meta-analysis. Clin Psychol Rev 2008; 28:736-745
    Price JR, Mitchell E, Tidy E. & Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews, 3, 2008
    Richtlijn Chronisch Vermoeidheidssyndroom: http://nkcv.nl/app/uploads/2015/10/richtlijn-chronisch-vermoeidheidssyndroom-cvs.pdf
    Bazelmans E, Prins JB, Lulofs R, van der Meer JWM, Bleijenberg G. Cognitive behaviour group therapy in chronic fatigue syndrome: a wait-list controlled study. Psychother Psychsom 2005; 74, 218-24
    RCT’s
    Prins JB, Bleijenberg G, Bazelmans E, Elving LD, de Boo TM, Severens JL, van der Wilt GJ, Spinhoven P, van der Meer JW. Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial. Lancet. 2001;357(9259):841-7
    Stulemeijer M, de Jong LW, Fiselier TJ, Hoogveld SW, Bleijenberg G. Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial.BMJ. 2005;330(7481):14
    Knoop H, Van der Meer JWM, Bleijenberg G. The effectiveness of self-instructions for chronic fatigue syndrome: a randomised controlled trial. British Journal of Psychiatry, 2008; 193: 340-341
    Tummers M, Knoop H, Bleijenberg G. Effectiveness of stepped care for chronic fatigue syndrome: a randomized non-inferiority trial. Journal of Consulting and Clinical Psychology 2010; 78:724-731
    Nijhof SL, Bleijenberg G, Uiterwaal CS, Kimpen JL, van de Putte EM. Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. Lancet 2012 , 14;379(9824):1412-8
    Wiborg JF, van Bussel J, van Dijk A, Bleijenberg G, Knoop H. Randomised controlled trial of cognitive behaviour therapy delivered in groups of patients with chronic fatigue syndrome. Psychother Psychosom. 2015;84(6):368-76
    Janse A, Worm-Smeitink M, Bussel-Lagarde J, Bleijenberg G, Nikolaus S, Knoop H. Testing the efficacy of web-based cognitive behavioural therapy for adult patients with chronic fatigue syndrome (CBIT): study protocol for a randomized controlled trial. BMC Neurol. 2015;15:137
    Implementatie
    Scheeres K, Wensing M, Knoop H, Bleijenberg G. Implementing cognitive behavioral therapy for CFS in a MHC: a Benchmarking Evaluation. Journal of Consulting and Clinical Psychology, 2008; 76:163-171
    Tummers M, Knoop H, Van Dam A, Bleijenberg G. Implementing a Minimal Intervention for Chronic Fatigue Syndrome in a Mental Health Centre: a Randomized Controlled Trial. Psychological Medicine 2012;42:2205-15
    Wiborg JF, Wensing M, Tummers M, Knoop H, Bleijenberg G. Implementing evidence-based practice for patients with chronic fatigue syndrome. Clin Psychol Psychother 2014;21:108-14
     
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  2. alex3619

    alex3619 Senior Member

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    When the PACE ship goes down a lot of passengers are going down with it, not just the Captain.
     
  3. alex3619

    alex3619 Senior Member

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    Meta-analysis relies on the data going into it. If the data is flawed, from flawed methodology, then the meta-analysis is flawed. The problems are deep and methodological.

    BIBO Babble in, babble out.

    I wish bipsers would pay more attention to science, evidence and reason, and not make excuses. (Bipsers = biopsychosocialites)
     
  4. TiredSam

    TiredSam The wise nematode hibernates

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    This shouldn't be a question of who has the superior powers of imagination, or how easy or difficult it is to imagine something. Why not just ask the patients?

    http://www.meassociation.org.uk/2015/05/23959/
     
  5. Philipp

    Philipp

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    On first glance:

    Saying exactly how and why the objections were baseless would have been helpful, because all that follows after this sentence is a lot of 'quantity' and no 'quality', but I guess that would not fit into such a short notice.

    Garbage In, Garbage Out very obviously applies to meta-analyses, so this is still not a qualitative argument.

    Admitting up front that no one took the time to actually look at said debate in depth so again, no qualitative analysis of the cited evidence was done, is very nice.

    What does 'controlled trial' mean in this context? Because if it does not mean 'objective outcome measures in a not blindable trial' this, again, would be a pretty weak statement.

    If it is, in fact, 'difficult to imagine' how people can conclude that interventions do or do not work even though after skimming a couple of abstracts from people with obvious conflicts of interest one would get the impression that we are dealing with a mildly effective treatment, yet again the 'quality' point should be looked at. Just because Bleijenberg and Knoop essentially keep repeating the same stuff it does not get more true or false over time.

    And a minor point if I may, if he cannot even be bothered to use the term ME/CFS correctly, how can we trust him that the work he did and cited did properly select patient cohorts, avoid the bias that will creep in in unblindable trials, properly collect datapoints and do the (actually pretty hard) proper statistical analysis?
     
  6. alex3619

    alex3619 Senior Member

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    I am also still concerned that the deliberate improper manipulation of statistical data in the PACE trial involving calculation of normal is still being largely ignored.
     
  7. unicorn7

    unicorn7

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    He doesn't explain this further, because he can't. This whole piece feels like a last resort to divert the attention of the dutch media on the PACE scandal and the upcoming biomedical research. It must be tough to see your whole lives work go up in flames...:whistle:
     
  8. Art Vandelay

    Art Vandelay Senior Member

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    I'm looking forward to seeing a lot of unemployed (and, indeed, unemployable) BPSers out there when their grants are inevitably not renewed.
     
  9. alex3619

    alex3619 Senior Member

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    Its even tougher to watch our lives being burned down by nonscience from bipsers.
     
  10. unicorn7

    unicorn7

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    Definitely!:(

    I like your word: Bipsers:lol: Does it mean something funny in English as well?
     
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  11. Sean

    Sean Senior Member

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    It is the polite way of spelling [insert insult of choice here].
     
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  12. Grigor

    Grigor Senior Member

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    ladycatlover, Valentijn and Joh like this.
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    'Our nakedness cannot be concluded from the opinion of one little boy in the crowd. Lots of people have admired the clothes greatly. It is hard to imagine how they could be wrong.'
     
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  14. Solstice

    Solstice Senior Member

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    Bips means bottom or ass in dutch.
     
  15. Sean

    Sean Senior Member

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    :rofl::rofl::rofl:

    Perfect. :D
     
  16. anciendaze

    anciendaze Senior Member

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    Glad you fess'd up. (French)

    Added: now realize I should have congratulated you in Spanish.

    ¡¡¡Culo!!!

    I would even suggest that announcements of new breakthroughs in BPS treatments should be met with shouts of "Cool-oh!" from the audience.

    How long do you think it would take them to catch on?
     
    Last edited: Oct 3, 2017
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  17. alex3619

    alex3619 Senior Member

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    bipsers = biophychosocialites = BPSers. I got sick of trying to say BPSers.
     
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  18. alex3619

    alex3619 Senior Member

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    Unintended bonus.
     
  19. Lou Corsius

    Lou Corsius

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    The Netherlands
    The professor believes in fairy tales

    Professor Gijs Bleijenberg stated in the Reformatorisch Dagblad October 2nd that cognitive behavioral therapy and graded exercise therapy are effective in CFS: chronic fatigue syndrome. He reacted because recent further analysis showed that the biggest research ever in this area, the PACE trial, suffers from serious flaws (1). This research even shows that the treatment is not effective. The professor claims that the criticism is not properly substantiated. He is severely mistaken though. Based on the original research protocol, the research data has been re-analysed with the help of professors in statistics (2). This re-analysis showed that there is no relevant effect.
    Next, the professor argues that Dutch research, to which he contributed a lot, also shows that the treatment is effective. But again the professor is mistaken. Recently, an article about FITNET, one of the Dutch researches, was published. The analysis showed that this study also suffers from serious flaws similar to the PACE trial. Recovery had been defined post hoc. Young people who were still seriously ill were considered improved or recovered.
    Looking at the other Dutch researches, some of them mentioned in his comment, it is clear that they are severely flawed too. The shortcomings lead to the consequence that these studies can not be used as evidence to underpin the effectiveness of cognitive behavioral therapy and graded exercise therapy. Frequently found flaws: the research group is mixed with other target groups, no objective measurements have been used or the adverse outcomes had not been reported, seriously ill people are counted as improved or recovered, there is no control group or the control condition is insufficient etc. etc.
    The fatigue investigators have been telling fairy tales for years now. But this fairytale has come to an end. It looks as if the professor cannot believe it yet.
    (1) http://senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/
    (2) http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724
    (3) http://www.mdpi.com/2076-328X/7/3/52/htm

    https://www.rd.nl/opinie/bij-cvs-me-is-cgt-terecht-eerstekeusbehandeling-1.1433876
     
    Last edited: Oct 5, 2017

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