1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Nijmegen finds new cohort for CBT

Discussion in 'Other Health News and Research' started by Rivotril, May 13, 2010.

  1. Rivotril

    Rivotril Senior Member

    Article published in The Netherlands last tuesday:

    Gedragstherapie voor vermoeidheid na Q-koorts
    NIJMEGEN/OSS - Gedragstherapie lijkt aan te slaan bij Q-koortspatinten die na hun ziekte last blijven houden van chronische vermoeidheid.
    Het kenniscentrum chronische vermoeidheid van het Radboud Ziekenhuis in Nijmegen merkt dat na behandeling van de eerste groep mensen.
    Ook andere klachten, zoals concentratie- en slaapproblemen, nemen af, zegt hoogleraar Gijs Bleijenberg.

    Het Bernhoven Ziekenhuis met vestigingen in de zwaar getroffen regio rond Uden gaat patinten binnenkort doorsturen naar Nijmegen.
    Het Radboud Ziekenhuis is vorig jaar begonnen met therapie voor de eerste patinten met het zogenoemde post Q-koorts vermoeidheidssyndroom (QFS), vergelijkbaar met vermoeidheidsklachten na andere ziekten.
    Een behandeling voor deze grote groep mensen was er nog niet en de vraag neemt toe.
    In Nederland is tot dusver bij meer dan 3500 mensen vastgesteld dat zij Q-koorts hebben (gehad).
    Tot een kwart van de mensen die ziek zijn geweest, heeft een jaar na hun besmetting nog klachten, vooral vermoeidheid.
    Volgens Bleijenberg is Q-koorts eerder het beginpunt dan de directe oorzaak van de vermoeidheid.
    Klinisch psycholoog Jan Vercoulen van het Radboud zegt dat patinten in een negatieve spiraal terechtkomen, omdat ze lang uit de roulatie zijn geweest.
    ''Q-koorts heeft hun bestaan volkomen ontregeld. Ze raken erin verstrikt'', vult Bleijenberg aan. Patinten die hij ontvangt, zijn door de radeloze huisarts weggestuurd met de ongelukkige woorden dat ze maar met de klachten moeten leren leven.
    De therapie is gekopieerd van behandelingen voor mensen die bijvoorbeeld herstellen van kanker of spierziekten.
    Patinten moeten geremd of juist ertoe aangezet worden om bijvoorbeeld weer te gaan sporten en werken.
    Ze krijgen oefeningen om minder na te denken over de Q-koorts en ontvangen hulp om een regelmatig slaapritme te houden.
    Cognitieve gedragstherapie is de enige bewezen hulp voor chronische vermoeidheid.
    Voor de werking bij Q-koortspatinten is het wetenschappelijk bewijs nog niet geleverd maar daarin wil Bleijenberg met officieel onderzoek verandering brengen.

    source: http://www.nu.nl/gezondheid/2244993/gedragstherapie-vermoeidheid-q-koorts.html
  2. Rivotril

    Rivotril Senior Member

    I translated it to English:

    NIJMEGEN / OSS – Cognital Behavioral Therapy (CBT)seems to catch on at patients with Q-fever which, after their disease, continue to keep suffering with cronic fatigue

    The “knowledgecentre chronic fatigue Radboud Hospital” in Nijmegen, notes that after treating the first group of patients.
    Also other symptoms, such as concentration and sleep problems, take off, says Professor Gijs Bleijenberg.

    The Bernhoven Hospital , with offices in the affected region around Uden, will shortly send patients to Nijmegen.


    The Radboud Hospital has started last year with the a therapy for the first patients with the so-called post-Q fever fatigue syndrome (QFS), similar to fatigue after other diseases.

    A treatment for this large group of people was not yet there while demand is rising.

    In the Netherlands, so far, more than 3500 people have been diagnosed with Q-fever.

    Up to one quarter of people who have been ill, still has symptoms one year after their infection, especially fatigue.

    Starting Point

    According to Bleijenberg, Q-fever is rather the “startingpoint” than the direct cause of fatigue.

    Clinical psychologist Jan Vercoulen from the Radboud says that patients end up in a negative spiral, as they have been long out of circulation.

    ”Q fever has completely disrupted their lives. They get entangled in it'', Bleijenberg adds. Patients who he gets at Radboud, have been dismissed by their desperate housedoctor with unfortunate words that they must learn to live with the complaints.


    The therapy is copied from such treatments for people recovering from cancer or muscular disorders.

    Patients should be inhibited or even encouraged, for example, return to sports and work.

    They get exercisse to reflect less on the Q-fever and receive help to keep a regular sleep rhythm.


    Cognitive behavioral therapy is only help that has been proven to work for chronic fatigue.

    For operation at Q-fever patients, the scientific evidence has not been delivered but Bleijenberg will alter that with official investigations .
    Maybe this also is part of their plan : seeking for new "victims" to apply their approach to.
    In the eyes of Nijmegen, apperently CBT is kind of a panacea for just every illness that's kind of difficult , or where scientist do not have a direct solution for.

    They make the same argument as they do with ME/CFS:
    it's just a negative spiral that patients are in, they just have to exercise more....

    Bleijenberg is psychologist and partner in crime of Van der Meer in Nijmegen in their ME/CFS approach, kind of a dutch Weasly.
    Vercoulen wrote a couple of articles about the huge effectiveness of CBT in ME/CFS a long time ago,
    I can remember Parvofighter mentioning him when he, in a fantastic way, analysed and unmasked the Kuppeveld study

    *note: sorry I see this is just not placed in the right thread (because this has nothing to do with the XMRV discussion) , mods please put this in the place where it belongs , i'm sorry
  3. oceanblue

    oceanblue Senior Member

    Thanks for the post and translation.

    Well, that's another illness that CBT can cure. Did you know that Q-fever was one of the CFS/ME-preciptiating illnesses studied in the Dubbo studies? It found that what predicted the development of CFS (as opposed to a normal recovery) was the severity of the initial illness, rather than any psychological factors. Follow-up work linked the severity of iillness to version of a particular cytokine gene patients had (Interferon-gamma).

    Do you know how big the Dutch study was?

    ps I'm intrigued by your pen name as I find rivotril helps me manage my illness...
  4. Dolphin

    Dolphin Senior Member

    Thanks Rivotril.
    BTW, Gijs Bleijenberg was invited over by the CDC CFS program for various meetings about CFS in the 2000s.
  5. Rivotril

    Rivotril Senior Member

    This same press release text was put in several papers in The Netherlands, but as far as I can understand, there is not a study yet, but just some practical experiences, so there's nothing published yet.
    So I don't know how huge this group was.
    For me, it was just a laugh to read that they are searching everywhere for "victims" to use their wondertherapy on.
    and that they make the same simplified assumptions as they make with ME/CFS: you are not ill but you have just put your body in a negative spiral, just start exercising and soon everything will be okay...
  6. oceanblue

    oceanblue Senior Member

    If it were only that simple. Funny thing is that CBT studies themselves now provide compelling evidence that this isn't true. The Cochrane Review of CBT in adults, which covers CBT/GET studies with 1,043 CFS patients, showed 40% of patients showing clinical improvement versus 26% of controls. And of course, those figures are based on 'clinical improvement', rather than a cure. So leaving aside any doubts about the quality of the indivdual studies, this comprehensive analysis shows that CBT helps less than half of all patients, with around half of the successes likely to be due to natural recovery or the placebo effect.

    Furthermore, these results are at the end of treatment. Follow-up e.g. one year later was often not done, and where it was done the evidence for effectiveness at follow-up is inconculsive. So the 40% success rate almost certainly overstates longer-term effectiveness of the treatment. Those are pretty unimpressive results, and do rather undermine the deconditioning hypothesis of ME/CFS.

    I'd love to know what Beijenberg has to say about the Cochrane Review.
  7. Rivotril

    Rivotril Senior Member


    As you might know, there are numerous (also two Dutch) studies that show that CBT does not that much in ME/CFS, and, in cases, even worsens the conditon of the patient.
    But Bleijenberg keeps going on telling that, in his practice, CBT works, and he is a great euhmm let's call it a magician with numbers to prove that it is doing, and he keeps getting money for it from the government.
    I see that Tomk greatly summerized some of these studies

See more popular forum discussions.

Share This Page