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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. charityfundraiser

    charityfundraiser Senior Member

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    I wish they had included actigraphy results in this paper. That would have been interesting to see if it recovered to normal or if it stayed low like the other studies yet the kids returned to school and said they were completely recovered.
     
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  2. Vitalic

    Vitalic Senior Member

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    It's certainly possible, and it may be that the recoveries people report are a result of self-delusion or coercion, but CBT is not the only psychological intervention aimed at CFS, you have numerous others like Mickel Therapy etc. where although their efficacy hasn't been clinically established the anecdotal reports of genuine recovery (from bed/house bound to fully active) that seem to regularly crop up indicate to me that some people really are responding to these treatments, it seems to be somewhat of a cop out to say they aren't capable of knowing whether they have recovered. I appreciate the points people are raising, and the flaws in these studies are real and not something that can be swept under the rug, but I feel wholly uncomfortable with saying that because of this we have to be rigidly tied to the view that at every point within the CFS spectrum there is an underlying physiological cause.
     
  3. Guido den Broeder

    Guido den Broeder *****

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    It all depends on what you mean by CFS.
     
  4. alex3619

    alex3619 Senior Member

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    (My bolding)

    Hi Vitalic, if there is such a spectrum, then CFS is not a disease - it immediately becomes a convenient relabelling of "I don't know what the heck this is" which is sometimes added to by "... but I have a theory". In other words, if this is true then we need to identify subgroups via objective tests and only apply "curative" psychological treatments to subgroups its applicable to (at best). I too find benefit from psychological therapy (even CBT) as applied as a aid to coping and reducing stress. As a curative measure (and in particular under the hypothesis that CFS is due to faulty illness beliefs) it is however stilll unproven and the evidence indicates its an utter failure. The book I am trying to write (slow going though) has a working title of "Embracing the Null Hypothesis" for a reason. None of the research on the faulty illness belief model of CFS has refuted the null hypothesis - they are all sadly lacking in scientific credibililty. So there might be practical applications of the theory, but its not science as we know it.

    Bye, Alex
     
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  5. Snow Leopard

    Snow Leopard Senior Member

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    It's just confirmation bias in action. Those who improved at the same time attribute their improvement to the therapy, whereas those who don't improve talk about it less, especially in the media.
     
  6. Dolphin

    Dolphin Senior Member

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    Unpublished letter from Frank Twisk: http://www.hetalternatief.org/CGT GET FITNET 2012 992.htm

    Frank has been prolific, in ME/CFS-terms, in terms of his published output in recent years. I think the main problem here might have been the letter was over the Lancet's word and reference limits (250 words and 5 references, respectively).
     
  7. Tito

    Tito Senior Member

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    To get back to the issue of school attendance, i remember a study a while ago explaining that if children got back to school they did poorly at their exams compared to their non-sick mates.
    TheWeasle himself acknowledged that in one of his studies http://adc.bmj.com/content/88/10/894.full.pdf To me it is very revealing that the cognitive impact of the illness is often ignored.
     
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  8. biophile

    biophile Places I'd rather be.

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    From memory and diagnostic issues aside, broadly-defined "CFS" tends to have better prognosis in children and adolescents, so it would not be surprising if CBT helped them cope better and also complain less about symptoms on questionnaires, but those that do not recover are at risk of more severe illness later in life.

    LOL @ defining "recovery" as 2 SD from the mean. Also, attending school for 90% of the time doesn't mean you're "recovered". I think about 20% of CFS patients are able to work time (with consequences), although most such patients would not be diagnosed with ME-ICC as that requires a minimum of a 50% reduction in activity. I had a similar experience as Dolphin, managed to lead a somewhat normal life for a few years with some consequences until it gradually made me permanently worse.

    I think another clue to the "success" of this study is that children and adolescents are more susceptible to outside influence, especially the mildly affected who would find it easier to be deceived into believing their symptoms are "normal" and working with their remaining capacity.

    Vitalic did make a good point that the results of this study were more impressive than usual, and Cort points out stress reduction as important. However, I agree with the suspicions of Esther12 (hard to trust biopsychosocialists after years of spin, Snow Leopard (the usual lack of objective overall improvements), oceanblue (could be another "flash in the pain" result), and Guido den Broeder who said: "With this study, I say focus first of all on the extremely poor results of 'usual care'. Note that it is the same treatment that, for many years, Nijmegen claimed to produce a 70% recovery rate!" (although from memory the 70% figure was for major/substantial improvement rather than recovery).
     
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  9. Simon

    Simon

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    Letters in response have been published by Tom Kindlon and Joan Crawford, as well as a reply to their points from the authors:
    Internet-based CBT for adolescents with chronic fatigue syndrome

    Tom Kindlon a[​IMG]
    Three of the four thresholds used by Sanne Nijhof and colleagues (April 14, p 1412)1 for their post-hoc definition of recovery from chronic fatigue syndrome are virtually the same as the entry criteria. For example, 40 or more on the fatigue severity subscale of the checklist individual strength 20 (CIS-20) was equivalent to “severe fatigue” at baseline, yet once a participant scored less than 40 (the mean +2 SDs for a healthy population) they could be counted as recovered! The face validity of their other post-hoc recovery definition, listed in the appendix, seems stronger, but it gives a much lower figure for recovery of 36% (rather than 63%).
    The cognitive behavioural therapy (CBT) intervention used encourages individuals to see themselves as “ex-patients”.2 This alone might have coloured the individuals' assessment as “fully recovered”. Indeed the figures in table 4 show that the controls who had “recovered” were numerically, although not statistically, better on the three indices than were those on internet-based CBT.
    It would have been interesting if Nijhof and colleagues had reported the recovered groups' actometer readings: previous research has shown that self-reported improvements after CBT have not translated into significant improvements in objectively measured activity levels3 or cognitive function.4 Three of the four measures that make up the recovery definitions are self-reported and thus subject to reporting biases. Attendance at school is an objective measure, although again the cutoff for “full school attendance” (≤10% school absence) is questionable and students might have foregone extracurricular activities to attend school.5 Furthermore, attendance does not mean that participants' academic performance was in accordance with their abilities.5
    I work in a voluntary (unpaid) capacity for the Irish ME/CFS Association.
    References

    1 Nijhof SL, Bleijenberg G, Uiterwaal CSPM, Kimpen JLL, van de Putte EM. Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. Lancet 2012; 379: 1412-1418. Summary | Full Text | PDF(143KB) | CrossRef | PubMed
    2 Bleijenberg G, Prins J, Bazelmans E. Cognitive behavioral therapies. In: Jason LA, Fennel PA, Taylor RR, eds. Handbook of chronic fatigue syndrome. Hoboken: Wiley and Sons, 2003: 493-526.
    3 Kindlon T. Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/chronic fatigue syndrome. Bull IACFS/ME 2011; 19: 59-111. PubMed
    4 Knoop H, Prins JB, Stulemeijer M, van der Meer JW, Bleijenberg G. The effect of cognitive behaviour therapy for chronic fatigue syndrome on self-reported cognitive impairments and neuropsychological test performance. J Neurol Neurosurg Psychiatry 2007; 78: 434-446. CrossRef | PubMed
    5 Van Hoof ELS, De Becker PJ, Lapp C, De Meirleir KL. How do adolescents with chronic fatigue syndrome perceive their social environment? A quantitative study. Bull IACFS/ME 2009; 17: 16-31. PubMed
    a Irish ME/CFS Association, PO Box 3075, Dublin 2, Ireland
    Internet-based CBT for adolescents with chronic fatigue syndrome

    Joan Crawford a[​IMG]
    Sanne Nijhof and colleagues1 claim that, after their FITNET intervention, 63% and 36% of the participants with chronic fatigue syndrome (CFS) were classified as “recovered” as defined by scores of within 2 SD and 1 SD, respectively, of the healthy population. Data from a questionnaire measuring self-rated improvement were also used. However, are such criteria valid?
    Nijhof and colleagues previously published data from a comparable group of adolescents (n=144, mean age 15·3 years [SD 0·6], 79% female) who did not have a chronic illness and who were not currently under treatment.2 A t test comparing this group and the “recovered” CFS group (at 12 months) shows that the recovered group had similar fatigue levels but significantly worse results (p<0·05) on school attendance and on the “physical functioning” subscale of the child health questionnaire than did the controls.
    CFS can have a relapsing-remitting course: some patients self-report recovery, only for the condition to return.3 Further longitudinal data are required to show that the recovered FITNET patients did not subsequently have a return of their symptoms and disability.
    A key feature of CFS is that exertion brings on a range of symptoms;4 those affected tend to engage in little high-intensity activity to avoid such effects.5 Information from actigraphy is essential to ascertain whether the recovered CFS patients are truly well or if they have adapted their lives and are engaging in less high-intensity activity (such as sports and dancing) than their healthy peers.
    I declare that I have no conflicts of interest.
    References

    1 Nijhof SL, Bleijenberg G, Uiterwaal CSPM, Kimpen JLL, van de Putte EM. Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. Lancet 2012; 379: 1412-1418. Summary | Full Text | PDF(143KB) | CrossRef | PubMed
    2 Nijhof SL, Maijer K, Bleijenberg G, Uiterwaal CS, Kimpen JL, van de Putte EM. Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity. Pediatrics 2011; 127: e1169-e1175. CrossRef | PubMed
    3 Reyes M, Dobbin JG, Nisenbaum R, Subedar N, Randall B, Reeves WC. Chronic fatigue syndrome progression and self-defined recovery: evidence from the CDC surveillance system. J Chronic Fatigue Syndr 1999; 5: 17-27. PubMed
    4 VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. Postexertional malaise in women with chronic fatigue syndrome. J Womens Health 2010; 19: 239-244. PubMed
    5 Newton JL, Pairman J, Hallsworth K, Moore S, Plötz T, Trenell MI. Physical activity intensity but not sedentary activity is reduced in chronic fatigue syndrome and is associated with autonomic regulation. QJM 2011; 104: 681-687. PubMed
    Internet-based CBT for adolescents with chronic fatigue syndrome — Authors' reply

    Sanne L Nijhof a[​IMG], Gijs Bleijenberg b, Cuno SPM Uiterwaal c, Jan LL Kimpen a, Elise M van de Putte a
    Tom Kindlon questions the definition of recovery, arguing that entry criteria can be virtually the same as recovery criteria. Our baseline data1 show very severely fatigued and impaired adolescents, not even close to the cutoff points for recovery. We determined normal ranges on the basis of our own sample of healthy peers, which is a control group that is healthier than average: all children with a medical or mental disorder were excluded.2 Theoretically, a patient might only change from −2·1 SD at inclusion to −1·9 SD after treatment, but analyses showed that not a single case merely “crossed the border”.
    We agree that cognitive behavioural therapy finally encourages individuals to see themselves as “ex-patients”, but maintenance of this self-reported improvement 6 months after the end of treatment suggests that this is the patient's own and lasting reflection. We regard school attendance as a major indication for recovery, and this outcome measure was validated through external assessment of school attendance.
    Kindlon and Joan Crawford both suggest use of actigraphy as an objective outcome measure. Our actigraphic data aided the therapist in tailoring the intervention. Patients with low activity need a different approach from patients with fluctuating activity. The goal of our treatment was reduction of fatigue and increase in school attendance, not increase in physical activity per se. Actual physical activity as measured by actigraphy is not likely to be the mediator of reduction in fatigue.3
    We do agree with Crawford that the cutoff point of −2 SD for recovery is arbitrary and no standardised criteria exist to define recovery of adolescents with chronic fatigue syndrome. In the appendix, we showed results with −1 SD cutoff points. Although this obviously changed the proportion of patients classed as recovered, it did not change our findings with regard to the relative effect of FITNET compared with care as usual, and therefore it does not alter our main conclusions.
    Further longitudinal data are required to determine the tenacity of the initial treatment effect. A paper describing the long-term follow-up results is currently in preparation. This will address Crawford's concerns about future relapses after initial recovery.
    We declare that we have no conflicts of interest.
    References

    1 Nijhof SL, Bleijenberg G, Uiterwaal CSPM, Kimpen JLL, van de Putte EM. Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. Lancet 2012; 379: 1412-1418. Summary | Full Text | PDF(143KB) | CrossRef | PubMed
    2 Nijhof SL, Maijer K, Bleijenberg G, Uiterwaal CS, Kimpen JL, van de Putte EM. Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity. Pediatrics 2011; 127: e1169-e1175. CrossRef | PubMed
    3 Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med 2010; 40: 1281-1287. CrossRef | PubMed
     
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  10. Dolphin

    Dolphin Senior Member

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  11. Valentijn

    Valentijn Activity Level: 3

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    OMG, they've found the cure for every disease! It doesn't matter how incapacitated people are, so long as they can be brainwashed into saying they're recovered and they show up to work or school once in a while :p
     
  12. biophile

    biophile Places I'd rather be.

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    I thought I already mentioned this but I couldn't find it. 90%+ school attendance is not good enough for "recovery". During the first few years of symptoms, I was fortunate enough to be able to push on and my school attendance did not generally dip below that. However, it was difficult staying adequately alert and academic performance gradually worsened until I was struggling to pass. At that stage in my life, CBT may have helped certain psychosocial consequences of symptoms, but could have also altered my perceptions about "fatigue" and "physical function" in ways which did not reflect reality.

    That said, I would have probably still been within normal range for physical function at the time, but at the cost of increased symptom burden which eventually lead to a permanent decline in physical function.
     
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  13. alex3619

    alex3619 Senior Member

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    Hi Valentijn, you have stumbled onto the secret of a perfect Utopia! The New World Order is here. :rofl:

    There is no problem if nobody sees it, or speaks about it. The Emperor is clothed!

    Bye, Alex
     
  14. alex3619

    alex3619 Senior Member

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    Hi biophile, I have not read this thread in a while, so I hope I am not repeating anything. If I were wanting to use this therapy for a child, I would want to know if their grades recovered. Attendence is a tick in a book, or on a database, it doesnt reflect academic performance. I think your concern is a good one. Bye, Alex
     
  15. Dolphin

    Dolphin Senior Member

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    Sorry again to read about what happened you. But sharing such insights and experiences is important.
     
  16. Dolphin

    Dolphin Senior Member

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    Just to point out that one of the published letters made the point about academic performanc:

     
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  17. Firestormm

    Firestormm Guest

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    Well, I'm grateful for the letters being posted and that at least they generated a response. We don't get that with PACE!

    I haven't been back through any of this, only reading the letters and reply this morning, but I'm left wondering, 'If they can use school attendance as an outcome measure with this, then why not employment in PACE?'

    Employment, like school attendance, might not (probably wouldn't) be the exact and fair measure we would like to see but I think it a reasonable outcome nonetheless.

    They do need to breakdown and explain school attendance. Comparing what this comprised before and after. If a child was unable to attend school in any capacity prior to this intervention, but felt able to and could manage in some better capacity after, then that to me is an improvement. Quite a significant one potentially.

    Performance measures and duration consistency of course matters (as they would with employment). And frequency of relapse. I could go on. Point is that without long-term studies we'll probably not be satisfied - and rightly so.

    Pending any negative developments I can see this option being rolled-out a la PACE to adults you know. It will be seen as more 'cost effective' than personal therapy after all although I suspect the take-up rate will be quite low and therefore the impact and effect similarly low too.

    Although I could be wrong. I think people generally will try what they are effectively recommended to try.
     
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  18. biophile

    biophile Places I'd rather be.

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    I doubt PACE will use employment outcomes as a criterion for recovery. The results were stark. For example, the mean (SD) of lost employment days in the PACE Trial over 12 months was: CBT = 151.0 (108.2), vs, SMC = 141.7 (107.5). "There was no clear difference between treatments in terms of lost employment." Assuming normal distribution, this would suggest that about 85% of the CBT group were losing a minimum of 42 days per year of work, making the [mean -1SD] rule here as ridiculous as it was when used for "normal" fatigue and physical function which was far from recovery. However, use of the [mean -2SD] rule is impossible here due to a large SD.

    Perhaps a reasonable compromise may be a threshold based on the maximum number of sick days allowed in full time employment, although this fails to account for work quality (same problem with school attendance) and type of work (participant may have downgraded their career to compensate for limitations). However, if a participant meets full criteria for "recovery" as per prior protocol (which they may have changed since then), *and* is working full-time, well their health may still not be perfect and actigraphy would have been nice, but this is still substantially better than the dubious threshold for "normal" fatigue and physical function. I would happily take that "recovery".

    I would still like to know how many GET participants reached the goal of 30-45 minutes of moderate intensity exercise at least 5 times per week. Objective outcomes for fitness may also help determine who is "recovered". Just look at the buff hamster on the exercise wheel in my current avatar, *that* is what GET participants should be like after the 2.5 year followup from baseline if the primary "deconditioning" model of CFS has much relevance.
     
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  19. Dolphin

    Dolphin Senior Member

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  20. Firestormm

    Firestormm Guest

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