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FITNET Trial: Effectiveness of internet-based CBT for CFS: an RCT (Nijhof et al, '12)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 29, 2012.

  1. Dolphin

    Dolphin Senior Member

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    Thanks for digging all that up.

    The figure from the full recovery paper is the one I had in mind.
    Also note that none of them had SDs close to 5.
  2. oceanblue

    oceanblue Senior Member

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    So would I. I'm not convinced the small difference in duration between the two groups would contribute much to the difference in outcomes. Would be very interesting to see the correlation between illness duration and outcomes; some people in both groups had been ill for a very long time.
  3. Dolphin

    Dolphin Senior Member

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  4. oceanblue

    oceanblue Senior Member

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    Thanks, Marco.

    That study (abstract here) is closer to what I was looking for in terms of self-report biast, but I'm not sure it quite does what it says the tin. They found looked at patients:
    1. pre-treatment
    2. at the close of the trial
    3. in a completely separate survey (ie not part of the original trial), 8 months later, while patients were still receiving treatment

    The self-reported gains were much smaller 8 months on, even though the patients were on the same treatment, than at the end of the trial. The researchers iterpreted this as evidence of the Hawthorne effect, patients reporting better outcomes because they were receiving more attention as part of a clinical trial.

    However, one explanation could be that the initial effects diminished. It would have been more convincing if they'd had a control group that had remained part of the original trial for another 8 months, then compared those in the trial with those outside it but still on the same treatment.

    It's still probably the best evidence I've seen on self-report bias that's relevant to CFS-type studies. thanks again.
  5. oceanblue

    oceanblue Senior Member

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    CIS-fatigue data for Dutch adolescents

    Severe Fatigue in Adolescents: A Common Phenomenon?


    This 2006 study (n=3,454) describes itself as a study of fatigue in a healthy population, though looking at some of the fatigue scores some of them appear to be rather unhealthy. The CIS-fatigue scores are higher than those quoted for adults above:

    Girls: 27.54 (12.68) [mean (SD)
    Boys: 21.26 (10.44)

    Nb mean + 2SD using these data would give an even softer fatigue threshold for 'recovery' than used in the study.

    The study also gives a breakdown of the distribution of fatigue scores.

    Hope this helps.

    ETA: Is this paper the source of their CIS-fatigue data?
    Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial
  6. Guido den Broeder

    Guido den Broeder *****

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    Of course, for purely statistical reasons already, not necessarily because the duration itself has an effect.

    It is the same as with unemployment. Those who have been unemployed for a long time have less chances of finding a job. Not because they're not looking that hard anymore (a popular belief among politicians), but because the others, who did have a good chance, are no longer part of the group.

    Likewise, a group of patients that have been ill for many years, no longer contains patients with a good chance to quickly recover: those already got better!
  7. Dolphin

    Dolphin Senior Member

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    Thanks.
    That could be it.
    In the Lancet paper, it has

    I am more used to adult figures.
    Also, I had automatically thought that adolescent/teenage figures would be better.
    However, perhaps the figures are worse in that age than adults e.g. not enough sleep, physical demands of growing, pressures of growing up, etc.
  8. PhoenixDown

    PhoenixDown Senior Member

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    What triggers each individual's fatigue? How long does the fatigue take to settle back to what's baseline fatigue for that individual? How much do various triggers agitate each individual's fatigue? This really is an incomplete picture. The fatigue scales they are using clearly do a great disservice to some patients.
  9. oceanblue

    oceanblue Senior Member

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    As Dolphin said, physical activity as measured by actometers was included as a possible 'predictor' rather than an outcome, but what's a little strange is that the protocol says actometer measurement is carried out at baseline, post-treatment and 6-month follow-up. Obviously you can't use a follow-up measurement as a predictor of treatment response. I wonder if they were collecting this data because they wanted to see if the treatment would improve actometer-measured activity, for once?
  10. oceanblue

    oceanblue Senior Member

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    Emphasis on school attendance and other goals

    I thought it would be worth highlighting some of the protocol appendix about school attendance, and other activites. School attendance seems to have greatest priority but they do consider home and social activity too:

  11. Dolphin

    Dolphin Senior Member

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    Adults: Nijmegen internet-based intervention found no change on actometers

    Free at: http://bjp.rcpsych.org/content/193/4/340.full

    This looked like it was helpful based on questionnaire results.

    However, actometer data from Wiborg et al (2010):

    (CBT (as Wiborg et al call it) =guided self-instructions)
    Baseline 63.1 (23.5)
    Second assessment 67.3 (22.5)
    Change score 4.3 (20.4)

    Waiting-list Control group
    Baseline: 63.5 (21.8)
    Second assessment: 67.8 (21.4)
    Change score: 4.3 (21.0)

    Information about the intervention:
  12. Firestormm

    Firestormm Guest

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  13. oceanblue

    oceanblue Senior Member

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    I'm confused. Is the Wiborg actometer data from the Knoop email study? And where does Nijmegen fit in?
  14. Valentijn

    Valentijn Activity Level: 3

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    I think prior actometer data from Nijmegen has been included in this discussion to show that Nijmegen hasn't been able to produce objective improvement in the past.

    In several studies (a few years ago?) they reported a spectacular improvement in how people feel after CBT. In those studies, they deliberately left out any mention of the actometers until several years after they were published, then used that actometer data to publish an additional paper discussed here.

    In that paper, they explain how perceived fatigue and physical activity are not related in ME/CFS, with the implication that treating perceived fatigue is more important than increasing physical activity.

    In another paper discussed here, the same group explains poor cognitive performance after being treated with CBT by concluding that actual cognitive importance must therefore be less important in ME/CFS than perceived cognitive performance.

    They have repeatedly created studies based on a "proven" CBT theory, and they will work backward to warp any findings to fit their theory. So it is extremely relevant to know when an ME/CFS study involves researchers from the Nijmegen CFS clinic.
  15. oceanblue

    oceanblue Senior Member

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    That's a really interesting point.

    I've tried to bring the data together, below. One measure is A/F, the ratio of school Attendance to physical Function. This is arround 0.75 for baseline and both 'Usual Care' follow-ups, but around 1.0 for FITNET patients at follow-up - suggesting that FITNET patients attend a lot more school for their levels of physical functioning. This could be a 'smoking gun' in terms of showing disproportionate energy being directed into school attendance rather than, say, social or home activity.

    However, I noticed that the ratio for reference healthy group is also around 1.0 (ie same as FITNET), so I'm not sure if this gets us anywhere.

    [table="width: 500, align: left"]
    [tr][th][/th][th]Attend[/th][th]Function[/th][th]Fatigue[/th][th]Energy[/th][th]A/F[/th][/tr] [tr][td]Reference[/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]'Healthy' population[/td][td]98%[/td][td]95[/td][td]30[/td][td]54[/td][td]1.03[/td][/tr] [tr][td]Recovery (weak, -2SD)[/td][td]>=90%[/td][td]>=85[/td][td]40[/td][td]33[/td][td][/td][/tr] [tr][td]Recovery (stronger, -1SD)[/td][td]>=94%[/td][td]>=90[/td][td]35[/td][td]44[/td][td][/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Baseline[/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]FITNET[/td][td]39.5%[/td][td]60.7[/td][td]51.2[/td][td]10.0[/td][td]0.65[/td][/tr] [tr][td]Usual Care[/td][td]45.1%[/td][td]56.8[/td][td]51.6[/td][td]9.2[/td][td]0.79[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Post-treatment[/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]FITNET[/td][td]84.3%[/td][td]88.5[/td][td]24.0[/td][td]66.7[/td][td]0.95[/td][/tr] [tr][td]Usual care[/td][td]51.7%[/td][td]70.0[/td][td]42.3[/td][td]28.5[/td][td]0.74[/td][/tr] [tr][td][/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]12 months[/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Usual care to 6 months[/td][td][/td][td][/td][td][/td][td][/td][td][/td][/tr] [tr][td]Not recovered >FITNET (n=31)[/td][td]85.7%[/td][td]84.2[/td][td]28.4[/td][td]57.5[/td][td]1.02[/td][/tr] [tr][td]Not recovered, more usual care (27)[/td][td]60.6%[/td][td]83.1[/td][td]32.9[/td][td]48.1[/td][td]0.73[/td][/tr][/table]
    Dolphin likes this.
  16. oceanblue

    oceanblue Senior Member

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    Oh, I see, I think. This latest Nijhof paper was from work based on the same Nijmegen clinic where the studies for the Wiborg actometer paper were carried out? I was confusing people with clinics.
  17. Dolphin

    Dolphin Senior Member

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    Where did you get this from?
  18. oceanblue

    oceanblue Senior Member

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    Calculated using the means derived from the appendix for recovery scores, as detailed in 'reference' above. Have I made a mistake.
  19. Dolphin

    Dolphin Senior Member

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    Ok, get it now. I hadn't associated the attendance figures with population norms but of course that makes sense.

    ---
    Could you do Attendance/Fatigue. Thanks.
  20. charityfundraiser

    charityfundraiser Senior Member

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    Ah thanks, oceanblue, for typing and formatting all that out, and coming up with the ratio to look at it. I guess if one were assuming that school attendance and fatigue levels should have a linear relationship, then it would look like the CFS patients were underallocating their energy to school before FITNET. I suppose though that even at the same energy level, if one were able to increase school attendance at the cost of something else, one might feel more accomplished.

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