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Friedberg et al: Efficacy of two delivery modes of behavioral self-management in severe CFS

Discussion in 'Latest ME/CFS Research' started by mango, Jul 31, 2016.

  1. mango

    mango Senior Member

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    Efficacy of two delivery modes of behavioral self-management in severe chronic fatigue syndrome

    Fred Friedberg
    a*, Jenna Adamowicz a, Indre Caikauskaite a, Viktoria Seva a & Anthony Napoli b

    Author affiliations
    a Department of Psychiatry, Stony Brook University Health Sciences Center, Stony Brook, NY, USA
    b Department of Social Science, Orient Building/Eastern Campus, Riverhead, NY, USA

    Fatigue: Biomedicine, Health & Behavior Volume 4, Issue 3, 2016 pages 158-174
    Received: 11 Apr 2016. Accepted: 21 Jun 2016. Published online: 29 Jul 2016.
    DOI:10.1080/21641846.2016.1205876

    ABSTRACT
    Purpose:
    To assess the efficacy of fatigue self-management for severe chronic fatigue syndrome (CFS).

    Methods:
    This randomized trial enrolled 137 patients with severe CFS. Participants were randomized to one of three conditions: fatigue self-management with web diaries and actigraphs (FSM:ACT); fatigue self-management with less expensive paper diaries and pedometers (FSM:CTR); or an usual care control condition (UC). The primary outcome assessed fatigue severity at 3-month follow-up. Analysis was by intention-to-treat.

    Results: At 3-month follow-up, the FSM:CTR condition showed significantly greater reduction in fatigue severity compared to UC (p = .03; d = .58). No significant improvement was found at 12-month follow-up for the FSM:ACT or the FSM:CTR condition as compared to UC (p > .10). The combined active treatment conditions revealed significantly reduced fatigue at 3-month follow-up (p = .03), but not at 12-month follow-up (p = .24) compared to UC. Clinically significant improvements were found for 24–28% of the intervention groups as compared to 9% of the UC group. Attrition at 12-month follow-up was low (< 8%).

    Conclusion: Home-based self-management for severe CFS appeared to be less effective in comparison to findings reported for higher functioning groups. Home-based management may be enhanced by remotely delivered interventional feedback.

    Keywords: Fatigue self-management, chronic fatigue syndrome, unexplained chronic fatigue, cognitive-behavior therapy, home-based self-management

    http://www.tandfonline.com/doi/abs/10.1080/21641846.2016.1205876?journalCode=rftg20
     
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  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    So, are they talking about the aural or anal routes of injection Bos Taurus faeces? :p


    Earth to Muppets! Earth to Muppets! Come in, bioscocial Muppets!
    Wasting time on this garbage with *SEVERELY ILL*, horribly distressed patients, instead of treatments to actual improve their primary medical condition is like forcing a cancer patient to listen to an IPod to "make them feel better" and deliberately denying them surgery, radiological or chemotherapy to stop them dying.

    it's not merely "Nero fiddling while Rome burns"
    It's like some terrorist loons are setting of atomic bombs and the biosocial, self obsessed assholes are going around pissing on the gigantic firestorms as cities burn and saying "Hey, look, we can put it out!"
    Uh, no.
     

    Attached Files:

    Last edited by a moderator: Jul 31, 2016
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  3. worldbackwards

    worldbackwards A unique snowflake

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    Earth
    I'm imagining someone popping up on your TV screen every couple of days, screaming "JUST GET UP! THERE'S NOTHING WRONG WITH YOU! STOP THAT NOW!"
     
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  4. mango

    mango Senior Member

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    (my bold)

    Ref 6 is "Friedberg F. Chronic fatigue syndrome, fibromyalgia, and related illnesses: a clinical model of
    assessment and intervention. J Clin Psychol. 2010;6:641–665."

    ...and it's available here:
    http://thirdworld.nl/chronic-fatigu...clinical-model-of-assessment-and-intervention

    Also, I looked up the definition of "affect" in a medical textbook. It says:
     
    Last edited: Jul 31, 2016
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  5. mango

    mango Senior Member

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    Ref 1 = Fukuda

     
    Last edited: Jul 31, 2016
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  6. mango

    mango Senior Member

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    (my bold)
     
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  7. Gijs

    Gijs Senior Member

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    They really don't understand ME at all. Poor science and a waste of money. I really doubt their intelligence.
     
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  8. mango

    mango Senior Member

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    I believe this might be their definition of "severe" CFS?
     
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  9. mango

    mango Senior Member

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    Ok, one last one:
     
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  10. mango

    mango Senior Member

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  11. Bob

    Bob

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    I'm not impressed either. Did they seriously expect to see meaningful short-term improvements in severely affected patients simply from writing a diary and recording activity levels?
    It's not at all clear to me how a bed-bound patient could possibly "achieve a healthy balance between activity, rest, and leisure"?!? Are they supposed to go for walks in their beds, and attend leisure activities in their beds? o_O


    Edited to add: To be fair, if this study investigated an activity management program similar to pacing (and I'm not sure if it did?), I think pacing is very helpful, but it's not a treatment and I wouldn't expect to see any meaningful improvements in severely affected patients after just three months of activity management.
     
    Last edited: Jul 31, 2016
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  12. mango

    mango Senior Member

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    The inclusion criteria say that you have to be "physically capable of doing the self-management program (e.g. walking assignments)", so it sounds to me like no bedbound patients took part in this study?
     
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  13. Comet

    Comet I'm Not Imaginary

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    Usual care? For PwME...?
    No lasting results? Shocking.
    C'mon Fred, did you really have to do a study to discover this? I thought you have ME/CFS.
    This wouldn't be lightly veiled CBT by chance, would it?
    (My bolds)
     
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  14. Comet

    Comet I'm Not Imaginary

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    So this study likely includes people suffering from illnesses other than ME/CFS.
    Oh wait... they have a note, so we can just assume a correct diagnosis of ME/CFS.
    But still, is any illness causing severe fatigue for 14+ years really likely to be cured/managed/successfully treated by writing diaries and listening to instructional CDs?

    What are these people thinking and why is it allowed to continue (rhetorical question)?!
     
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  15. Kati

    Kati Patient in training

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    Basically Fred wants to remain a NIH funded investigator so his conclusions will keep the door open for further behavioral interventions.

    It's pretty sad that he is using the term 'severe' when his subjects are able to walk.

    Patients need to be aware of these studies researching behavioral interventions. I am not sure if this particular one paid participants, but the financial incentive is not worth another publication on behavioral interventions for ME and CFS.
     
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  16. Snowdrop

    Snowdrop Rebel without a biscuit

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    <sigh> More waste. And nothing at all for patients.
     
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  17. Comet

    Comet I'm Not Imaginary

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    Fred Friedberg, if you are reading this, why not do a study that is helpful to PwME? Maybe a study of supportive care and the difference in quality of life it might make for us?

    For example, do people with moderate ME/CFS (ICC or CCC criteria, please) have better QoL when given support workers to help with chores, cleaning, driving to doctor appts, etc?

    Perhaps a study highlighting what PwME must give up in order to have the physical strength and energy just to get through the day if we have to see a doctor or do other 'extra' tasks on a particular day.

    How about this one? What is the impact made on the self esteem of PwME, as we are routinely disbelieved and mocked by modern medicine? This must take an incredible amount of fortitude to battle every single day, for years on end, with no end in sight, in addition to battling ME/CFS in the first place.

    Pardon my tone, it's just that it seems to me that this sort of study would be far more helpful to us than attempted behavior modification, which, as the study highlighted in this thread seems to have proved does not work.

    We really could use your help. Please stand up for patients. The NIH seems more open than ever to helping PwME. Are you?
     
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  18. Sean

    Sean Senior Member

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    maladaptive activity patterns.

    Did he demonstrate these alleged maladaptive activity patterns exist in the first place, and are significant causal factors?

    Or did he just assume them to be so?
     
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  19. alex3619

    alex3619 Senior Member

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    I will save someone a lot of money. The answer is yes. Please spend the money on more useful research.

    However in order to justify public funds being spent on such things the research may have to be done.

    So far as I am concerned if there are no objective markers you cannot speak of improvement, recovery etc. All you can speak about, with even limited reliability, is quality of life. That does have some value, though limited. Its time research aiming at effective treatment, based entirely on subjective outcomes, is put to rest.
     
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  20. Comet

    Comet I'm Not Imaginary

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    Agreed. I just wanted to throw out a thought that psych research might be more helpful to the patient if approached differently, because I don't think Fred Friedberg is going to be analyzing gut microbes or the like any time soon.

    As we all know, there is a mountain of biomedical research in urgent need of funding. I certainly hope this is given the highest priority and psych studies are put on the back burner... Way back.
     
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