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A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

Discussion in 'PsychoSocial ME/CFS Research' started by JaimeS, Dec 14, 2018.

  1. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Here's a weird one:
    A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up.
    https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00720/abstract

    These people seem to be implying that four days of CBT will fix your "CFS/ME" permanently, showing continued improvement at one year follow-up.

    Oxford of course. And all subjective surveys, of course. But man! Can you imagine telling someone they had a major psychiatric disorder but that four days of therapy would cure them permanently?
     
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    oh dear..
    Bjarte Stubhaug is a psychiatrist with a doctorate on chronic fatigue syndrome or "neurasthenia", which is the same according to him. He runs a resort in Norway with a four-day treatment plan including mindfullness, walks and classes. He doesn't distinguish ME from stress, burnout etc. I've heard numerous accounts of ME patients deteriorate after treatment at his resort.

    I think he was at a conference about CFS at Cook Islands quite a few years back where also some PACE-researchers participated.. But can't find the conference when googling..

    He has published lots of articles about ME and done a lot of damage in general by spreading "facts" about ME as a stress disorder.

    He's developed an expensive app about stress and mindfulness. I'm sure many here will be disappointed to learn its only available in Norwegian..
     
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Very reassuring though to read they've used the criteria from the PACE study for inclusion..
     
  4. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Oh wow. Patients were selected using the Oxford criteria, improvement criteria from the PACE trial were used with only subjective outcomes and there was no control condition whatsoever.

    I really hope this is a hoax uncovering the nonsense in ME/CFS research.
     
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    I'm sure that has been discussed on a thread some time ago. Perhaps someone will remember which.
     
  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    He runs a four-day retreat?

    Wow, it suddenly all makes sense.

    Which journal published this drivel? Frontiers?!

    It's 'provisionally accepted'... someone publish a comment for heaven's sake.
     
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  7. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    This is why I made the comment about the Frontiers journals a few weeks back. A lot of ME/CFS studies end up there, and I don't think it's a good thing.
     
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  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    There was a thread in another place in another universe. The commercial friends of BPS were there - maybe organised it. There used to be a webpage showing familiar faces and glasses of beer but I guess it has probably been taken down.
     
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  9. inox

    inox Senior Member (Voting Rights)

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    I guess this is about Stubbhaugs program/centre, but note the name Gerd Kvale also.

    Gerd Kvale is a professor in psycology (at Haukeland university hospital, the home of Fluge/Mella), leading the OCD team. She is one of the two persons who developed the "Bergen 4 day treatment" (B4DT) - "get rid of your anxity in four days"

    https://helse-bergen.no/klinikk-for-4-dagers-behandling-b4dt


    Innovation of the year
    The CTF was awarded “Innovation of the year” by The Norwegian Psychological Science Association in 2015. The CTF is highly requested by patients, families and therapists, both nationwide as well as internationally, not only for OCD but for other anxiety disorders as well as for depression

    https://helse-bergen.no/klinikk-for-4-dagers-behandling-b4dt/the-bergen-4-day-treatment
     
  10. large donner

    large donner Senior Member (Voting Rights)

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    This program has no chance of succeeding it takes four days to do what LP can do in three.
     
  11. Sean

    Sean Senior Member (Voting Rights)

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    Today I learned that 'Lightning Process' translates into 'Bergen Treatment' in Norwegian.
     
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  12. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Sigh. This is the problem with assuming that a questionnaire is actual evidence of improvement after an unblinded intervention.

    These interventions may be effective at changing cognitions with respect to how patients report symptoms, but this is not the same thing as objective improvements in their lives. Specifically achieving the human needs that were previously unfullfilled due to the illness. There is a fundamental lack of quality in how we assess the impact of interventions like this.
     
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    Ah. Of course. It's 4 A's, not 3. Better check with 5 just to be sure but 4 seems to be the right amount.

    So it's pronounced Leviosaaaa after all, in Norwegian anyway. Now let's fund 40 more identical replications of the same trial that all conclude that more research is needed and that should secure a couple decades of employment doing the equivalent of shoveling rain during a huge storm.

    This has always really just been an employment scheme for mediocre physicians, has it? Just stuff those trials with people randomly snatched from the street for all they care.
     
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  14. inox

    inox Senior Member (Voting Rights)

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    I'm in no way defending this work on ME or disagree with you on the lack of quality.

    More concerned that Gerd Kvale is connected to this research, as the B4DT is so well applauded over here, making it harder to criticice the "ME"-study :-/ Also the implication that ME is more or less the same as OCD and anxiety. Don't know how the quality of the B4DT study is, but the media coverage seems nothing but positive. Again, making it harder for ME-patients to criticise a similare approach for our illness - we are already heavily criticed for arguing against LP, CBT etc :-/

    The Kavli trust, that also fund Fluge/Mella also funds the establishing of several B4DT centers for children/youth in Norway. The link also contains short description of each treatement day.

    https://kavlifondet.no/2017/03/lar-angsten-slippe-taket/
     
    Last edited: Dec 15, 2018
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  15. inox

    inox Senior Member (Voting Rights)

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    Yeah... :-/ we have our very own flavour of the BPS-cult over here....
     
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  16. erin

    erin Senior Member (Voting Rights)

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    Ah hah! I bought into this in my early days and went ahead, had a 2 days silent mindfulnes workshop. I left the place slightly peaceful and content, remembering coming back home when I turn the corner to our street I saw my sister in law's car. I thought fuck! 2 days of peace and silence gonna be wasted in probably 10 minutes and I was right.

    So, never mind sorting you for life 10 minutes it took me to get dizzied with verbal diahorrea and back to the usual tiredness.
     
  17. Kalliope

    Kalliope Senior Member (Voting Rights)

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  18. Trish

    Trish Moderator Staff Member

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    I have looked through it and am not impressed.

    305 patients diagnosed with Oxford criteria. 219 completed all the assessments including 1 year follow up.

    148 patients fulfilled PACE entry criteria
    'Clinically significant' improvement was defined as at least half a standard deviation, which meant improvement on CFQ of 2 and on SF-36 of 7 points.

    54 patients Oxford only,
    46 of these gave 1 year follow up data
    39 of these improved on CFQ from baseline,
    Mean CFQ drop of 8.1 in 1 year
    36 improved on SF36 PF from baseline.
    Mean SF36 PF increase of 20.4

    94 CDC criteria as well as Oxford,
    68 of these gave 1 year follow up data
    62 improved on CFQ from baseline,
    Mean CFQ drop of 10.8 in 1 year
    Mean SF36 PF increase of 29.2
    59 improved on SF36 PF from baseline.

    Graphs for the whole group suggest that a third of the improvement happened between initial interview (which included lifestyle advice and an 'explanation' of their symptoms) and starting the 4 day treatment program, and the rest of the improvement happened during the 4 days, with scores slipping back a bit in the year following the treatment.

    Given the huge loss to follow up, the brainwashing effect of the treatment on how to perceive the illness and symptoms that will greatly influence the outcomes, the lack of a control group and the subjective outcome measures, I don't think anything can be concluded from this trial.

    The claim that 80 to 90 percent of participants showed clinically significant improvement is nonsense for several reasons:

    1. Less than 72% gave 1 year follow up data. The figure should have been calculated for all those treated, which would reduce the proportion showing 'improvement' to about 55 to 65% of the patients.

    2. 'Clinically significant' improvement was defined as at least half a standard deviation, which meant improvement on CFQ of 2 and on SF-36 of 7 points.
    This is clearly nonsense - a little persuasion can make a much bigger change than this without any objective change.

    3. Given that practically all the 'improvement' shown on the questionnaires happened over the treatment days, any suggestion that it is unhelpful beliefs leading to deconditioning that is perpetuating symptoms is nonsense. A daily walk for 4 days isn't going to reverse years of alleged deconditioning, and if patients continued these daily walks for the year after treatment, how come their SF36PF got a bit worse over the rest of the year.

    4. Similarly if it is 'central sensitisation' that is perpetuating ME, and this is a physical phenomenon in the brain, how can 4 exhausting days of listening to talks doing CBT, meditating and being made to go on long walks magically reverse this. And if it did, how come the patients haven't fully recovered?

    Surely what this trial 'proves' if anything, is that ME is not caused or perpetuated by deconditioning (or by central sensitisation).
     
  19. Trish

    Trish Moderator Staff Member

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    From the discussion:
    So they admit it's about changing perceptions, not about objective improvement in health.

    And they admit that despite the brainwashing patients were still fatigued.

    Confounding factors to any analysis of outcomes weakening the conclusions further.

    So they admit the conclusions have no solid scientific validity beyond 'everyone else gets away with shoddy methods so we will too'.
     
  20. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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