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Who said: no getting back to work or drop in benefits after GET / CBT?

Discussion in 'General ME/CFS News' started by JaimeS, Nov 21, 2018.

  1. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Another 'who said' post!

    I've got Vink's paper (2016).

    Even the PACE authors themselves say there was no difference between groups in lost employment, before or after the trial, and yet CBT and GET were more expensive anyway, and that may be enough.

    In general benefits is a terrible, terrible judge of wellness. Like, you just KNOW that the CBT group and GET group were strongly discouraged from applying based off of the very premise: that their recovery will be based on effort alone.

    But I feel like there were other studies. A Belgian one? that showed no getting back to work. [Edit: it's Dutch, I see!]

    And did ANYONE actually use actigraphy in GET and CBT without later lighting the data on fire? That'd be a much, much more objective measure of how well the therapy works out.
     
    Last edited: Nov 21, 2018
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  2. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Some of the Dutch CBT researchers used actigraphy frequently. They reach some bizarre conclusions when they have to rationalize that CBT ''improves'' fatigue, but doesn't lead to increased level of activity.

    https://www.researchgate.net/public...atigue_syndrome_The_role_of_physical_activity

    Think there's also one British study, but I think it's back from 1997 or 1995 or something, I think it was a GET study. I think Vink has referred to it before? Not sure :)!
     
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  3. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Not sure if this is the kind of thing you mean, but on actigraphy:
    https://www.ncbi.nlm.nih.gov/pubmed/20047707
     
  4. JaimeS

    JaimeS Senior Member (Voting Rights)

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    OMG you're both amazing -- and SWIFT

    :woot: !!! :hug:
     
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    OMG amazing!

    I was tooling around PR looking for this and I literally thought to myself, I should ask @Dolphin -- @Dolphin knows. :)

    :hug:
     
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  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Thanks. Here are original reports in French or Dutch for anyone who wants them. The French report was by far the longest thing I have ever read in French. There are lots of tables which made reading it easier.
     

    Attached Files:

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  8. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Luckily for you guys, the results of this report were summarized in an English document by the Belgian Health care Knowledge centre (Federaal Kenniscentrum voor de gezondheidszorg KCE). it can be found here: https://kce.fgov.be/sites/default/files/atoms/files/d20081027358.pdf

    The chapter "Summary of the RIZIV/INAMI report (2006)" gives you some background on what you are reading. This was not a really a treatment trial. It was an evaluation of the CFS healthcare policy implemented in 2002 in Belgium. Treatment consisted of CBT and GET and was rolled out all over the country. The government agency paying for all of this (RIZIV/INAMI) ordered the CFS centres to collect multiple data, so the national CFS policy could be evaluated, which they did in 2006. So that's what you're reading. The relevant conclusion was:

    "Physical capacity (maximal or sub-maximal according to the patient’s possibilities) did not change between start and end of the treatment. Employment status decreased at the end of the therapy, from an average of 18.3% of a 38h- working week, to 14.9%. [...] The percentage of patients living from a sickness allowance increased slightly from 54 to 57%."
    Edit: Overlooked that Dolphin allready posted the link, apologies...
     
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  9. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    They tried to minimalize the fact that the employment rate dropped by emphasizing that volunteer work increased.
     
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  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Bizarre but not uncommon
     
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  11. JaimeS

    JaimeS Senior Member (Voting Rights)

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    BTW:

     
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  12. obeat

    obeat Senior Member (Voting Rights)

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    In the UK you have to have an income protection/ critical illness plan in place before onset of illness. Hence only people who are higher earners will have one. Remember " yuppie flu"! By undertaking a GET program it would be easier to then activate these benefits. A possible incentive to take part in the trial????
     
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  13. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Interesting!

    Tho at the start, there were comparable numbers of ppl who had income protection &/or private insurance, so it doesn't explain those differences between the groups.
     
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  14. alktipping

    alktipping Senior Member (Voting Rights)

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    all these reports that mention standard medical care as a reference neglects to tell you that standard medical care in the uk or at least in areas of the uk = nothing not even a handout leaflet when you first get diagnosed with post viral fatigue syndrome . so how do you make any real comparisons between their bogus treatments and non treatments of standard medical care .
     
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  15. JaimeS

    JaimeS Senior Member (Voting Rights)

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    They have the nerve to call it "specialised medical care".

    Right.
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    Especially given the premise that what they are testing is the "only treatment" (according to them anyway, it isn't but whatever that's what they're claiming) so that by definition standard medical care cannot be anything since THERE IS NO FREAKING TREATMENT.

    I guess that was a mediocre attempt at creating a control treatment arm since they didn't have any controls, whether healthy or, even more relevant, deconditioned patients. I guess people just magically fill in the "controlled" when they read PACE: a randomized trial, while they cite the fact that RCTs are the gold standard in medicine and this isn't even an RCT so get out of here with your nonsense.

    I had a thought last night and haven't seen much about it but it's a serious embarrassment that no one seems bothered by the fact that the GET hypothesis is that the patients are deconditioned and they did not have deconditioned patients as controls. Of course that's because it would have falsified their hypothesis but it's really depressing how unprofessional medicine can be at times and how much magical thinking goes into it.
     
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  17. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Yep.

    It's really remarkable how bad it all is.

    Biomed folks have been comparing to sedentary controls for yonks.
     
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  18. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Making it a mess of uninterpretability.

    Yes, but note that according to the UK study -- to the degree we can trust it -- benefits increase globally. So they'd need to compare it to other pwME who had other therapies or no therapy or SOMETHING vaguely resembling a control group. I haven't gotten a look at the Belgian study. Did they?

    That part is baked in.

    If you are the master of your fate, then not getting better must be a deliberate decision: an 'attachment to the sick role'.

    PwME aren't stupid. They get the message loud and clear with CBT and GET. If you don't recover, it's your fault.

    So why would you try for benefits? I mean, it doesn't really matter if you internalize this message or not. So long as you know how you are viewed as a person with this disease, and whether you will be held at fault for your lack of recovery.

    CBT and GET is apparently really successful at one thing: conveying its underlying ideology.
     
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  19. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I've had more than my share of abuse, but never had the "pleasure" of the brain washing GET/CBT done in some countries. Though my government still seems to support this theory demonstrated by its lack lustre actions to date.

    One pillar of this program is to convince pwME they do not have a physical illness, but have a psychological one. How damaging and corrosive. And, if they are also convinced they do not deserve sickness benefits, then the BPSers are saying, contrary to their own denial of stigma re psychological illnesses, that psychiatric condtions are stigmatized.

    Circular arguments - I think I'm getting dizzy! Ha!
     
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  20. JaimeS

    JaimeS Senior Member (Voting Rights)

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    https://forums.phoenixrising.me/ind...-and-its-discontents.50594/page-4#post-835029
     
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