1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

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. user9876

    user9876 Senior Member

    Messages:
    796
    Likes:
    1,960
    I was wondering what these work loss figures mean when benefit take up also increases. To lose work days persumably you need to be employed. But with income benefits increasing persumably as well as losing work days people were also working less hours (or not at all).
     
    biophile likes this.
  2. Simon

    Simon

    Messages:
    1,531
    Likes:
    4,911
    Monmouth, UK
    For the UK, the average sickness rate (weighted to match age and sex make-up of PACE) is around 6 days per year, which might provide a useful benchmark.
     
    Dolphin and biophile like this.
  3. WillowJ

    WillowJ Senior Member

    Messages:
    3,148
    Likes:
    2,851
    WA, USA
    I agree. I managed 98% school attendance while I was attempting to attend school, but I was often not able to keep up with the rest of the class as regards, say, completing assignments.

    During some of those times, I would have been unable to attend CBT (schedule too full just trying to attend school & required activities [some number of concerts, etc.]--no extras except church on Sunday). But I was already using great coping styles (and by what others said to me I was able to verify the accuracy of my assessment). Some of it was a bit too good of coping some years :lol: and I was ignoring serious signs and symptoms which should have been checked out, but that would suit Nijmegen just fine. (I'd probably have been diagnosed with POTS or NMH or SVT, had I gone to the doctor at that point, supposing the doc had been any good.)

    I also have never recovered the considerable amount of function I lost while pushing myself to attend university.

    sorry that you also had this difficulty, BP.
     
    biophile likes this.
  4. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,166
    Just to highlight, for what it's worth, the letters said:


    and
     
    WillowJ likes this.
  5. WillowJ

    WillowJ Senior Member

    Messages:
    3,148
    Likes:
    2,851
    WA, USA
    and well done! I agree with you that narrative can be useful (otherwise I'd not have posted a story about myself on the world wide web), but it's probably even better that you wrote to peer-reviewed journals where doctors have a better chance of reading. Cheers :)
     
    Dolphin likes this.
  6. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,166
  7. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,902
    http://jamia.bmj.com/content/early/2012/10/12/amiajnl-2012-001175.abstract?papetoc

    Pardon the bump. I've not read this paper, but thought that it could be worth posting the abstract here for potential future reference.

     
    Valentijn likes this.
  8. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,166
    I have just found that if I go to Google Scholar http://scholar.google.com/ and enter:
    “Internet-based cognitive behavioural therapy (FITNET) is an effective treatment for adolescents with chronic fatigue syndrome”
    And then click on the EC paper, one gets a preview which includes all the text of the piece (it cuts off after 3 references).

    The image is a bit small but with Internet Explorer, and probably some other browsers, one can zoom in and then it’s fairly legible.
    Alternatively save the jpg image and zoom in on it.

    It doesn't work for me if I just paste the link into my browser so I won't do that.

    I didn't find it very exciting.
     
  9. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,902
    Turns out it was all hype over nothing.

    Statistically insignificant difference between the two groups at follow up. It seems that this criteria for CFS in adolescents captures a lot of people who just get better over time. They've got 'treatments' which can encourage people to answer questionnaires a bit differently for a while... and we're not grateful enough for them.

    I wonder if this new is going to be hyped by the Science Media Centre? Lots of coverage last time: http://forums.phoenixrising.me/inde...cfs-an-rct-nijhof-et-al-12.14931/#post-243393

    lol at the psychosocialists whinging about not receiving enough positive media coverage for their 'evidence based' treatments.

    http://pediatrics.aappublications.org/content/early/2013/05/08/peds.2012-2007.abstract
     
    Dolphin and Bob like this.
  10. Bob

    Bob

    Messages:
    8,910
    Likes:
    12,607
    South of England
    I haven't been paying attention to this study, or following this discussion, but it's been pointed out to me that 'usual care' consisted of the following:

    Usual care
    The patients in the control group will receive the usual care available in the region where the patient lives. The available usual care for adolescents with CFS in the Netherlands includes: individual/group based rehabilitation programs, psychological support including CBT face-to-face, graded exercise therapy by a physiotherapist, etc. All care received will be monitored during the study.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3049137/

    So does this mean that it can now be said that internet-based CBT is equivalent to face-to-face CBT, GET and 'rehabilitation' programs, etc?
     
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,902
    This forum is now a substitute for my memory Bob. I search here to find out what I think about something.

    The control group problem was discussed, but it all seems a bit redundant now that we know whatever differences there were disappeared at their follow-up point. The researchers are still trying to spin this as a big success though:

    http://www.healio.com/pediatrics/ad...-term-chronic-fatigue-recovery-in-adolescents

     
    Dolphin and Valentijn like this.
  12. Bob

    Bob

    Messages:
    8,910
    Likes:
    12,607
    South of England
    Thank you Esther. I can't remember a thing about this study, and I'm being a bit lazy because I can't be bothered to read up on it again.
    But I think it was your earlier comments that prompted me to post my previous comment.
    I seem to remember you saying that there was no difference between the treatment group and the control group?
    So what I'm asking is, if there were no differences between the treatment group and the control group, would this have been considered a success, because the control group consisted of full treatments?
    In other words FITNET proved to be as effective as other treatments?
     
  13. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,902
    This is from memory, so be sceptical: I think that the control group involved 'usual care' and a lot of those in usual care (but not all) received some sort of CBT or GET.

    The initial paper seemed to claim that the provision of FITNET led to really big improvements in recovery rates (it seemed a genuinely impressive result), but this was difficult to interpret, as the control group seemed to do unusually badly for teens (although I'm not sure exactly what we should expect here, and I think that we have less good evidence on natural course of 'CFS' for teens). I remember think that it was likely FITNET would be less prone to quackery than normal CBT, as both sides would have a clear record of what was said. Anyway, the follow up now shows no difference between treatment and control groups, so it seems likely it was just an example of additional treatment leading to people being more positive about symptoms in a way that had no real impact upon their health. The weird nature of the control group does make it really hard to say though. Maybe it shows how super-effective FITNET is, that CBT/GET take a bit more time to be super-effective, but that all these kids would have been permanently disabled without these fine interventions.

    We need more attempts at placebo control with behavioural interventions. The trouble is that it seems no 'positive' behavioural intervention likely to capture the problems with response bias can be so quacky that it is recognised as not being of 'real' value to patients.
     
    Dolphin and Bob like this.
  14. Bob

    Bob

    Messages:
    8,910
    Likes:
    12,607
    South of England
    New paper by some of the FITNET co-authors (it's not a FITNET paper, but I think perhaps it might cite the FITNET paper):

    Clinical Practice: Chronic fatigue syndrome
    Charlotte L. Werker, Sanne L. Nijhof, Elise M. van de Putte
    June 2013
    European Journal of Pediatrics
    http://link.springer.com/article/10.1007/s00431-013-2058-8

    Abstract
    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.

    Separate thread:
    http://forums.phoenixrising.me/inde...ice-chronic-fatigue-syndrome-june-2013.23759/
     
  15. Bob

    Bob

    Messages:
    8,910
    Likes:
    12,607
    South of England
    Esther12, I've done a little reading on FITNET now. It seems that i hadn't read up about FITNET after all, which is why I couldn't remember any of the details. :confused:

    As far as I understand it (I haven't read the papers or discussions in full) there are a number of weaknesses in the study, including: a post-hoc & questionable definition of recovery; a lack of objectively measured endpoints (e.g. actometers); the unusually low improvement rates for people receiving usual care; and the lack of a structured, well-defined or homogeneous control group. And of course, no placebo control, as always in these studies.

    Looking at the FITNET long-term follow-up paper, the short-term improvements (aka 'recovery') seen in the FITNET group were mainly maintained at long-term follow-up, but there was no difference between the FITNET group and the usual care control group at long-term follow-up. (The control group had caught up with the FITNET group.)

    This means, using their methodology, FITNET was demonstrated to have no effectiveness beyond the control group.

    I think perhaps the results suggest that a high proportion of adolescents (who experience chronic fatigue, at least) are likely to see significant natural improvement over time. At best, FITNET appears to speed up the natural improvements, but this is questionable because of the lack of objective endpoints measures, instead relying of subjective questionnaire scores which can be influenced by the therapy, the therapists and parental involvement in the FITNET program.

    The long-term follow-up (LTFU) paper abstract concludes:
    “At LTFU, usual care led to similar recovery rates, although these rates were achieved at a slower pace.”

    (I'm sure that you've all worked this out already, but I'm using this post to organise my thoughts!)
     
    Dolphin, WillowJ, Simon and 1 other person like this.
  16. Bob

    Bob

    Messages:
    8,910
    Likes:
    12,607
    South of England
    Sean and Valentijn like this.
  17. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,902
    Thanks Bob, and thanks for those comments.

    The lack of difference between control and intervention group at follow up, combined with the history of spin from these authors, does mean that it's hard to be interested enough to take a close look at this study. It will be interested to see if it goes on to be cited as a CBT success story.
     
    Valentijn and Bob like this.
  18. WillowJ

    WillowJ Senior Member

    Messages:
    3,148
    Likes:
    2,851
    WA, USA
  19. Bob

    Bob

    Messages:
    8,910
    Likes:
    12,607
    South of England
    Hi Willow,
    Are you certain that it indicates that the NIH helped fund it?
    I can't see any mention of a grant or funding.
    I wonder if that website is just a registry for clinical trials?
     
    Dolphin likes this.
  20. WillowJ

    WillowJ Senior Member

    Messages:
    3,148
    Likes:
    2,851
    WA, USA
    hmm, that's a good question. you could be right. I guess I don't know.
     
    Bob likes this.

See more popular forum discussions.

Share This Page