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Clinical Practice: Chronic fatigue syndrome - June 2013

Discussion in 'Latest ME/CFS Research' started by Bob, Jun 14, 2013.

  1. Bob


    England (south coast)
    [caution: psychobabble]

    Clinical Practice: Chronic fatigue syndrome
    Charlotte L. Werker, Sanne L. Nijhof, Elise M. van de Putte
    June 2013

    European Journal of Pediatrics

    The diagnosis chronic fatigue syndrome (CFS) was conceptualized in the mid-1980s. It is a clinically defined condition characterized by severe and disabling new onset fatigue with at least four additional symptoms: impaired memory or concentration, sore throat, tender cervical or axillary lymph nodes, muscle pain, multi-joint pain, new headaches, unrefreshing sleep or post-exertion malaise. Chronic fatigue syndrome in adolescents is a rare condition compared to symptomatic fatigue. The estimated prevalence of adolescent CFS ranges between 0.11 and 1.29 % in Dutch, British, and US populations. Diagnosis of the chronic fatigue syndrome is established through exclusion of other medical and psychiatric causes of chronic fatiguing illness. Taking a full clinical history and a full physical examination are therefore vital. In adolescence, CFS is associated with considerable school absence with long-term detrimental effects on academic and social development. One of the most successful potential treatments for adolescents with CFS is cognitive behavioural therapy, which has been shown to be effective after 6 months in two thirds of the adolescents with CFS. This treatment effect sustains at 2–3-year follow-up. In conclusion, the diagnosis CFS should be considered in any adolescent patient with severe disabling long-lasting fatigue. Cognitive behavioural therapy is effective in 60–70 % of the patients. Prompt diagnosis favours the prognosis.
  2. Bob


    England (south coast)
    Nijhof and van de Putte were co-authors of the FITNET trial:

    Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial
    Dr Sanne L Nijhof MD, Prof Gijs Bleijenberg PhD, Cuno SPM Uiterwaal PhD, Prof Jan LL Kimpen PhD, Elise M van de Putte PhD
    The Lancet, Volume 379, Issue 9824, Pages 1412 - 1418,
    14 April 2012

    Internet-Based Therapy for Adolescents With Chronic Fatigue Syndrome: Long-term Follow-up
    Sanne L. Nijhof, MDa, Loudy P. Priesterbach, BSca, Cuno S. P. M. Uiterwaal, MD, PhDb, Gijs Bleijenberg, PhDc, Jan L. L. Kimpen, MD, PhDa, and Elise M. van de Putte, MD, PhDa
    PEDIATRICS Vol. 131 No. 6 June 1, 2013
    pp. e1788 -e1795
    (doi: 10.1542/peds.2012-2007)

    Forum discussion re FITNET:
  3. A.B.

    A.B. Senior Member

    So how do they define "successful treatment" and "effective in 60-70% of patients"?

    They are making some very far-fetched claims there.
  4. Esther12

    Esther12 Senior Member

    Ta Bob. Too many CBT sales-pitches being churned out to be able to keep up with.

    re this little bit:

    It seems like a lot of teenagers who could be diagnosed with a criteria for CFS just go on to get better anyway. Do they account for this?

    ie: Does prompt diagnosis correlate with improved diagnosis just because they're catching more teens who would get better anyway, or have they done anything to show that the act of being promptly diagnosed is in itself helpful? A recent Crawley paper made the same claim, but I've not had the time to look into that one either, so thought I'd quickly mention my thought here.

    They really seem to be going all out in arguing that they're worth spending money on at the moment.
    Valentijn and Bob like this.
  5. Mark

    Mark Former CEO

    Sofa, UK
    One of her papers that I looked at a while ago seemed to be saying there was a huge prevalence of CFS in teenagers, and seemed to be using criteria even looser than Oxford. So yes, I'd say it's a fair bet that she's analyzing a whole load of extra people who were going to recover anyway (I don't remember there being any control to explore that question of natural recovery rate), finding a high prevalence rate to justify her industry, and finding a high 'success' rate to justify her industry. This is all from recollection of what I thought when I read the paper so perhaps I'm being unfair, but I don't think so. Now, if this analysis is fair, then obviously it's very bad science, and self-justifying science, but that's a natural tendency of a great many people who aren't always consciously aware that what they are doing is fundamentally flawed in this way - particularly if they are surrounded by yea-sayers. Science is always well aware that those problems of bias are standard, and the whole point is supposed to be that other scientists challenge and correct those biases. So although there's a lot of proper criticism of her for doing things in this way, there should be at least as much and possibly more criticism attached to those supposed scientists and sceptics who uncritically accept this sort of stuff and fail to scrutinise and challenge it.
    maryb, MeSci and Valentijn like this.
  6. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Could a lot of these teenagers had chronic fatigue rather than chronic fatigue syndrome? Teenagers are well known for insufficient sleep, insufficient exercise, and poor nutrition. That type of fatigue might respond to CBT.
    maryb, biophile, Bob and 2 others like this.
  7. biophile

    biophile Places I'd rather be.


    People Are Overly Confident in Their Own Knowledge, Despite Errors

    June 10, 2013 — Overprecision -- excessive confidence in the accuracy of our beliefs -- can have profound consequences, inflating investors' valuation of their investments, leading physicians to gravitate too quickly to a diagnosis, even making people intolerant of dissenting views. Now, new research confirms that overprecision is a common and robust form of overconfidence driven, at least in part, by excessive certainty in the accuracy of our judgments.
    Dolphin, Tito, alex3619 and 2 others like this.
  8. Shell

    Shell Senior Member

    Wasn't it Nancy Klimas who said the best hope of remission was enforced bed rest? The stats showing teens tend to "recover" or at least go into remission more often than older people with ME is likely due to the fact that teens tend to live at home and can go to bed.
    My friend got ME when he was about 21. He was at college but went home. He had no treatment 'cuz is GP just wanted to feed him antidepressants. He went to bed.
    He has been in a pretty steady remission for over 25 years now and although he has blips he is doing ok.
    BBC ALBA did a programme about the ME outbreak in the islands (Scotland) which was dx as Coxsackie B. Those who have made a "full recovery" (I never think it's wise to say this as it could just be remission and the poor sods will be devastated if they relapse) were mainly the teens who WENT TO BED.
    I'm reading Ramsay's Disease at the mo. (Kindle Library) and I note that recovery rates from ME before and leading up to the Royal Free outbreak were pretty good. It was post-1980s that the number of chronics seems to have increased. I can't help wondering if this is because before the stupid CFS and GET/CBT fiasco, patients simply did what their body demanded of them - and went to bed.
    Sidereal, heapsreal, Dolphin and 3 others like this.
  9. Valentijn

    Valentijn Senior Member

    That's an interesting point. It does seem that bed rest was considered the normal treatment for illness once upon a time - whereas now people are expected to work through a cold or flu, and no one should stay home for a week unless they're literally dying.

    I was forcing myself to go to class when I got my pre-ME infection, since it was around exams time, though I did then take a week off after exams and then had another week of holiday time. After the infection seemed to go away, I was forcing myself to go to class as much as I could, even though I was crashing after each outing.

    Maybe it can make a difference to rest immediately. Though there's no way to know if the infection is capable of leading to ME, and even once the crashing starts it takes a while to figure out what's going on and get a diagnosis. So knowing what happens at the beginning might not even help, except to convince the general public not to be dumbasses when they get an infection.
    Dolphin and alex3619 like this.
  10. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi biophile , this is one of the reasons why my book name was changed some time ago to Embracing Uncertainty. We need to incorporate uncertainty into our thinking process, and that includes diagnosis and treatment.
    biophile, Little Bluestem and merylg like this.
  11. Dolphin

    Dolphin Senior Member

    I just read this.
    Although some of it is pretty bland, probably as they don't have as much psychobabble to quote for children as they have for adults, I don't think it has much going for it.

    This table shows where they're coming from:

    4. Bakker BJ, van de Putte EM (2012). De vermoeide puber. Praktische Pediatrie, 4. 195-200.
  12. Dolphin

    Dolphin Senior Member

    A letter has been published in response to the paper by Werker et al. It's open-access:

    There's also an authors' response but it's not open-access:

    biophile and Esther12 like this.

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