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Health Council of the Netherlands report on CFS (2005)

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Apr 2, 2014.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    I posted this to Co-Cure back in 2008. I thought I'd post it here as many people won't have seen it there:

    -----
    FWIW

    Generally a lot of people in the English-speaking ME/CFS world would be more familiar with the writings and talk on CBT by English professionals.

    However, Dutch researchers have also written a lot on the subject and for general readers of the literature (e.g. people looking through PubMed), without scepticism, their claims that CBT is leading to "recovery" and "full recovery" in a reasonable percentage of patients can look impressive. [Aside: personally, I think they've haven't proved the patients have recovered at all, they've just set very low thresholds using a few questionnaires i.e. not objective measures].

    Anyway, for my sins, I have recently read: Health Council of the Netherlands report on CFS (2005):

    Dutch language version: http://www.gr.nl/pdf.php?ID=1167&p=1
    English language version: http://www.gr.nl/pdf.php?ID=1169&p=1
    (ETA: now at: http://www.gezondheidsraad.nl/en/publications/healthcare/chronic-fatigue-syndrome)

    I'm thought some people might be interested in the p.68 extracts from:

    ~~~~~~~~~~ 6.5.3 Dutch experiences with CBT ~~~~~~~~~~~~~~~~~~~~

    *Tom: so Dutch-style CBT couldn't be combined with medical treatments as some professionals in other countries might recommend.

    One of the co-authors has been at various meetings small meetings organised by the CDC's CFS team:

    . Prof. G Bleijenberg Professor of Medical Psychology, St Radboud University Medical Centre, Nijmegen

    Two of the co-authors have also produced a lot of writings over the years (perhaps some others on the committee have published also):

    . Prof. B Van Houdenhove Professor of Psychiatry, University Hospitals, Leuven

    . Prof. JWM van der Meer Professor of Internal Medicine, St Radboud University Medical Centre, Nijmegen

    It seems to me that no dissenting voices were let on to the panel.

    Some other things in the report I particular disliked:

    - bashing patient organisations [done not once but numerous times (if there had been patient representatives on the panel this would not probably have happened]

    - the section on children (too many problems to mention!)

    - Comments on "fitness to work". I'm appending a sample section below. The claims are repeated elsewhere.

    Tom Kindlon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Comments on "fitness to work" (Not a recommendation) (Make sure to read the first two bullet-points!!)

    Last edited: Apr 5, 2014
    Esther12, alex3619, Ren and 3 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    The bullshit listed above is definitely making its way to practitioners. My psychologist gave me the "you are not a patient!" line when she heard I was getting my orthostatic intolerance investigated. She also informed me that doctors could never help me and that I would remain severely disabled unless I cured myself. It briefly made me intensely suicidal.

    And pretty much the entire clinic was opposed to me getting a mobility scooter. The one exception was the physical therapist, so they brought in someone else to lecture me about "only using the scooter on bad days" during an appointment with the physical therapist. They could not comprehend that the scooter was for my good days, since I was incoherent and unable to sit up on the bad days.

    Those guidelines are directly responsible for aggravating the effects of disability, psychologically harming patients, and limiting mobility.
    Last edited: Apr 3, 2014
  3. A.B.

    A.B. Senior Member

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    Valentijn, why did you go to a nutter in the first place? Did you not know any better at the time?
  4. Ren

    Ren Primum Non Nocere

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    Potemkin Village
    Evil.
  5. Valentijn

    Valentijn Activity Level: 3

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    It was a clinic that started off as a real ME clinic a couple years earlier, but transitioned to Psychobabble Central at about the same time I started going there (I saw the real ME doc for my first visit, then the clueless tool for the 2nd visit). The nasty psychologist also started off with the sympathetic approach to gain trust before transitioning to the blame-game. And pacing and relaxation techniques were also used as a lead-in to GET.

    So the first few months weren't bad (if you don't mind being lied to while real treatment is withheld) and even a bit useful in managing things. Then came the full-on CBT/GET psychosomatic crap.
    Ren likes this.
  6. Esther12

    Esther12 Senior Member

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    The report didn't seem to be available at the above links, but is here:

    http://www.gezondheidsraad.nl/en/publications/healthcare/chronic-fatigue-syndrome

    Just read the summary, and it was nice to actually see them acknowledge (on p 6) that CBT expects a lot of patients. They rather exaggerate the benefits though!

    biophile and Valentijn like this.
  7. Valentijn

    Valentijn Activity Level: 3

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    If the therapy is successful in treating a disease which they approach as purely psychosomatic, how on earth do they explain a failure to return to normal functioning?
    Sean, Tom Kindlon and biophile like this.
  8. biophile

    biophile Places I'd rather be.

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    The claimed 70% success rate is hogwash, particularly if they define success as "more or less normal level of functioning", and fails to account for natural course and other factors.

    Just as the fall of CBT/GET for CFS is inextricably bound up with the failure to demonstrate stepping-up of physical activity.

    I guess that is a reference to the PACE Trial?
    Valentijn likes this.
  9. Sean

    Sean Senior Member

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    Straight fraud.
    biophile, Sidereal and Valentijn like this.

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