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(2006) Audit of Belgian CBT/GET rehab clinics (large sample)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 30, 2010.

  1. Dolphin

    Dolphin Senior Member

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    This is being discussed in another thread but I thought I'd give it its own thread.
    Original are only available in Dutch/Flemish and French

    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0701D&L=CO-CURE&P=R3379&I=-3

     
  2. Dolphin

    Dolphin Senior Member

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  3. Dolphin

    Dolphin Senior Member

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    Translation of some more info

    Translation of some more info
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0702C&L=CO-CURE&P=R4161&I=-3

     
  4. Dolphin

    Dolphin Senior Member

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    An official summary in English of the results from the Belgian "Reference Clinics"

    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0810B&L=CO-CURE&P=R3233&I=-3&m=18356

    An official summary in English of the results from the Belgian "Reference Clinics" for CFS (which used CBT and GET)


     
  5. oceanblue

    oceanblue Senior Member

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    Given the methodological problems idenitified, I wonderd if this study is being/has been repeated since? Certainly the findings here are not impressive. But then neither were the results of the Price 2009 Cohcrane Review of CBT (n=1,000+). A large amount of data now indicates that CBT/GET is not the answer.

    Certainly a lot now rests on the PACE trial results, which I think are due in the autumn.
     
  6. Dolphin

    Dolphin Senior Member

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    I don't know how far you got but these have employment data (a bit worse at the end and at follow-up than at the start) so even worse than the Price 2009 Cochrane Review. Usually employment status hasn't been measured but because people improved on a few questionnaires some say it shows work capacity has improved/ability to work has been restored. More people improved than got worse on the questionnaires here - but the employment data (e.g. hours worked), didn't match it.
     
  7. Dolphin

    Dolphin Senior Member

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    Belgian Newspaper ("De Morgen") article on Belgian CBT/GET CFS clinics

    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0810D&L=CO-CURE&P=R3646&I=-3&m=18356

     
  8. Mithriel

    Mithriel Senior Member

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    Thank you for gathering all this information together.

    It is infuriating how much proof and validation they are calling for about retroviruses when there is an overwhelming amount of evidence that their preferred treatments just don't work.

    Hypocrites all.

    Mithriel
     
  9. Snow Leopard

    Snow Leopard Senior Member

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    Excellent. Though I haven't read through it yet..
     
  10. oceanblue

    oceanblue Senior Member

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    Thanks again, Dolphin, for all the info which I have finally managed to read!

    Let's be honest, the results are shockingly bad. I take your point about them being worse than the Price review but perhaps that's because the Belgium auidit is 'real life' rather than clinical trials?

    I'm sure that Wessely noted in a recent paper about something else (cortisol?), that the CBT results themselves were poor (this paper? http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=7161684) and went on to speculate that real life clinical practice never matches clinical trials - actually I think this is true in general, not just of CBT for ME.

    I wondered if NICE will be considering these Belgium results.

    Also, Esther Crawlye's BRAME network is apparently monitoring treatment results from all participating clinics. I will try to contact her to see if any results are available.
     
  11. Mithriel

    Mithriel Senior Member

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    Esther Crawley is nothing to do with BRAME :Retro smile: She is on the dark side, the one who is intending to do a trial of LP on children.

    Mithriel
     
  12. oceanblue

    oceanblue Senior Member

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    Apologies, I got my acronyms mixed up, no offence to BRAME intended. Esther Crawley is Chair of BACME, who apparently have data on the treatment outcomes of thousands of patients who pass through the clinics of BACME members who all practice CBT and GET. Given the Belgium results it would be interesting to see UK results for similar large-scale CBT & GET.
     
  13. Dolphin

    Dolphin Senior Member

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    Yes, it would.

    AfME got money from a massive fundraiser in 2006 (raised over 200,000 in one night) part of which was allocated for research (first research they'd funded in years) and asked for submissions. They funded two: one investigated the setting up a post-mortem biobank thing (good). The other was given to Esther Crawley, Barts (Peter White's service) and somewhere else (east Midlands I think - dodgy area) for a project like this. As I recall, Esther Crawley and team then got more money for the project from somewhere else. Anyway, given her dismissal of the findings of the AfME/AYME 2008 survey results (with regard to the high rates of adverse reactions to GET, etc - despite being the medical advisor to AYME) along with her enthusiasm for the NICE guidelines (and Peter White's enthusiam for the final version - he likes to promote them), I think I could have found better people to do the review and/or better ways for research money to be spent. My guess is that AfME were trying to "lick up" to some people. Maybe I'm wrong.
     
  14. oceanblue

    oceanblue Senior Member

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    Esther Crawley is no longer BACME chair but is PI for their National Outcomes Database. They are planning to publish results some time next year but Esther commented that the situation is complicated as most teams offer more than one treatment eg Activity management (Pacing) as well as CBT, so untangling the effects of the different therapies won't be easy. Guess we'll just have to see what comes out of the process.
     
  15. Dolphin

    Dolphin Senior Member

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    I can't remember all the details but I've heard people complain that the Minimum Data Set (data that all services need to collect) isn't very exciting.
     
  16. Dolphin

    Dolphin Senior Member

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    A report which summarises the data

    Snow Leopard has highlighted this on another thread. I read this report before but thought I might as well highlight it:
    http://www.kce.fgov.be/Download.aspx?ID=1222
    See pages 77-83 for a piece on the Belgian rehab clinics.
    They spin it slightly which is why I prefer the original [An example of spin: It says that there was no explicit intention to help people get into the workforce but this is not correct – the main file talks about sessions to help people get into the workforce].
     
  17. Dolphin

    Dolphin Senior Member

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    Explaining some of the tables

    I have just written an E-mail to somebody explaining some of the data and how to read it. I thought I'd get value out of the work and post an edited version here. Some of this is probably a repeat of what was translated above.
    ==========
     
  18. Dolphin

    Dolphin Senior Member

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    From Johan Mares (@maresjohan) on Twitter

    https://twitter.com/maresjohan/status/485426355182768129

    Information in Dutch on the "new" centres: http://www.riziv.fgov.be/care/nl/revalidatie/convention/chronic-fatigue/diagnostic-center.htm

    Google Translation

     
    Last edited: Jul 5, 2014
  19. Valentijn

    Valentijn Activity Level: 3

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    Right ... CBT and GET centers are being shut down because they have been shown not to work in the real world. Sensible enough.

    And then they will re-open as CBT and GET centers, because the research claims that CBT and GET work :meh:

    Are they completely unable to get their heads out of their anal orifices long enough to stop reading the low-quality and badly spun BPS research summaries stored therein? Can they at least think about the issue rationally? Or even *gasp* read some real research?
     
    Sean, Esther12, Dolphin and 1 other person like this.
  20. Dolphin

    Dolphin Senior Member

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    I'd be curious if patients or patient groups have lobbied for clinics/services - it's a risky time lobbying for things as there's a good chance health services won't offer doctor-led services that can involve a lot of testing and drug treatments, that health services may not want to pay for at the moment for various reasons.

    Also, sometimes if patients go to politicians, politicians want to do/achieve "something".
     
    Esther12 and Valentijn like this.

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