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Examples of misleading statements in CFS papers from biopsychosocialists

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15,786
Code:
Table 5: Number of patients with paid work and total worked hours per week before and after CBT
# of hours   0.5-8   8.5-16   16.5-24  24.5-32  32.5-40   Average        N
 paid work   hrs(N)  hrs(N)   hrs (N)  hrs (N)  hrs (N)   hrs(st. dev)
Before CBT     4       6       12       6        13        24.9 (11.9)   41
 After CBT     6       4       15       2         4        20.0 (9.9)    31

Table 6: Number of (university) student patients and study hours per week before and after CBT
# of hours   0.5-8   8.5-16   16.5-24  24.5-32  32.5-40   Average        N
study/week   hrs(N)  hrs(N)   hrs (N)  hrs (N)  hrs (N)   hrs(st. dev)
Before CBT     4       5       2       2         2        17.3 (12.2)    15
 After CBT     4       5       2       1         0        12.7 (7.1)     12

Table 7: Number of patients active in sports and hours doing sports per week before and after CBT
(this probably includes working out in a gym, etc)
# of hours   0.5-1   1.5-2   2.5-3   3.5-4   4.5-5    More than  Average        N
sport/week   hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs (N)  5 hrs (N)  hrs(st. dev)
Before CBT    11       4       1       3         5       0         2.4 (1.64)   24
 After CBT    10      18       2       0         4       2         2.3 (1.65)   36

Table 8: Number of hours of active social contact per week before and after CBT
 # of hours       0     0.5-1   1.5-2   2.5-3   3.5-4   4.5-5   More than  Average        N
active social   hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs(N)  5 hrs (N)  hrs(st. dev)
   contact
 Before CBT       36      24      17       8       6       0        6       1.64 (2.0)    100
  After CBT       35      25      20       7       3       2        6       1.58 (1.9)    100

Table 9: Number of  hours of passive social contact per week before and after CBT
 # of hours       0     0.5-1   1.5-2   2.5-3   3.5-4   4.5-5   More than  Average        N
passive social  hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs(N)  5 hrs (N)  hrs(st. dev)
  contacts
 Before CBT      16      27      25      12      10       5        5       2.16 (1.9)     100
  After CBT      19      31      25      12       3       5        5       1.93 (1.9)     100

I think it's extremely interesting that structured exercise increased after CBT, and all other forms of activity dropped. As far as I can tell, an extra 25.2 hours of structured exercise (total for the entire group of 100) correlates with a drop of 508 hours per week spent at work or at studies.

I doubt that each person exercised an extra 15 minutes and worked/studied 5 hours fewer. My guess is that those 12 (or more) people that started exercising after CBT (which is the point of CBT) had some serious trade-off in the form of working/studying less, stopping work, and/or dropping out of university altogether.
 

biophile

Places I'd rather be.
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Nater et al 2012 (emphasis added):

Of all treatment approaches, cognitive-behavioral therapy (CBT) and graded exercise are best supported by randomized, double-blind trials, as well as meta-analyses of these trials.


PubMed entry : http://www.ncbi.nlm.nih.gov/pubmed/22608645

Full text on CO-CURE : https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1205d&L=co-cure&F=&S=&P=12748

Double-blind CBT/GET trials? <smirk>

The credit for this find goes to Esther12 for pointing it out on another thread (http://forums.phoenixrising.me/inde...-handbook-of-clinical-neurology-vol-106.17640).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Code:
Table 5: Number of patients with paid work and total worked hours per week before and after CBT
# of hours  0.5-8  8.5-16  16.5-24  24.5-32  32.5-40  Average        N
paid work  hrs(N)  hrs(N)  hrs (N)  hrs (N)  hrs (N)  hrs(st. dev)
Before CBT    4      6      12      6        13        24.9 (11.9)  41
After CBT    6      4      15      2        4        20.0 (9.9)    31
 
Table 6: Number of (university) student patients and study hours per week before and after CBT
# of hours  0.5-8  8.5-16  16.5-24  24.5-32  32.5-40  Average        N
study/week  hrs(N)  hrs(N)  hrs (N)  hrs (N)  hrs (N)  hrs(st. dev)
Before CBT    4      5      2      2        2        17.3 (12.2)    15
After CBT    4      5      2      1        0        12.7 (7.1)    12
 
Table 7: Number of patients active in sports and hours doing sports per week before and after CBT
(this probably includes working out in a gym, etc)
# of hours  0.5-1  1.5-2  2.5-3  3.5-4  4.5-5    More than  Average        N
sport/week  hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs (N)  5 hrs (N)  hrs(st. dev)
Before CBT    11      4      1      3        5      0        2.4 (1.64)  24
After CBT    10      18      2      0        4      2        2.3 (1.65)  36
 
Table 8: Number of hours of active social contact per week before and after CBT
# of hours      0    0.5-1  1.5-2  2.5-3  3.5-4  4.5-5  More than  Average        N
active social  hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs(N)  5 hrs (N)  hrs(st. dev)
  contact
Before CBT      36      24      17      8      6      0        6      1.64 (2.0)    100
  After CBT      35      25      20      7      3      2        6      1.58 (1.9)    100
 
Table 9: Number of  hours of passive social contact per week before and after CBT
# of hours      0    0.5-1  1.5-2  2.5-3  3.5-4  4.5-5  More than  Average        N
passive social  hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs(N)  hrs(N)  5 hrs (N)  hrs(st. dev)
  contacts
Before CBT      16      27      25      12      10      5        5      2.16 (1.9)    100
  After CBT      19      31      25      12      3      5        5      1.93 (1.9)    100

I think it's extremely interesting that structured exercise increased after CBT, and all other forms of activity dropped .

That Table 5 with the CBT results.. can someone please tell me what paper/study that comes from?
 

biophile

Places I'd rather be.
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8,977
That Table 5 with the CBT results.. can someone please tell me what paper/study that comes from?

I think it is this: http://home.planet.nl/~koolh222/cgtbijmecvsvanuitperspectiefpatient2008.pdf

Abstract summary is in English:

Background

In recent years, Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME/CFS), has been getting a lot of attention in scientific literature. However its aetiology remains unclear and it has yet to be clarified why some people are more prone to this condition than others. Furthermore, there is as yet no consensus about the treatment of ME/CFS. The different treatments can be subdivided into two groups, the pharmacological and the psychosocial therapies. Most of the scientific articles on treatment emphasize the psychosocial approach.

The most intensively studied psychological therapeutic intervention for ME/CFS is cognitive behaviour therapy (CBT). In recent years several publications on this subject have been published. These studies report that this intervention can lead to significant improvements in 30% to 70% of patients, though rarely include details of adverse effects. This pilot study was undertaken to find out whether patients’ experiences with this therapy confirm the stated percentages. Furthermore, we examined whether this therapy does influence the employment rates, and could possibly increase the number of patients receiving educational training, engaged in sports, maintaining social contacts and doing household tasks.

Method

By means of a questionnaire posted at various newsgroups on the internet, the reported subjective experiences of 100 respondents who underwent this therapy were collected. These experiences were subsequently analysed.

Results

Only 2% of respondents reported that they considered themselves to be completely cured upon finishing the therapy. Thirty per cent reported ‘an improvement’ as a result of the therapy and the same percentage reported no change. Thirty-eight percent said the therapy had affected them adversely, the majority of them even reporting substantial deterioration. Participating in CBT proved to have little impact on the number of hours people were capable of maintaining social contacts or doing household tasks. A striking outcome is that the number of those respondents who were in paid employment or who were studying while taking part in CBT was adversely affected. The negative outcome in paid employment was statistically significant. CBT did, however, lead to an increase in the number of patients taking up sports.

A subgroup analysis showed that those patients who were involved in legal proceedings in order to obtain disability benefit while participating in CBT did not score worse than those who were not. Cases where a stated objective of the therapy was a complete cure, did not have a better outcome. Moreover, the length of the therapy did not affect the results.

Conclusions

This pilot study, based on subjective experiences of ME/CFS sufferers, does not confirm the high success rates regularly claimed by research into the effectiveness of CBT for ME/CFS. Over all, CBT for ME/CFS does not improve patients’ well-being: more patients report deterioration of their condition rather than improvement.

Our conclusion is that the claims in scientific publications about the effectiveness of this therapy based on trials in strictly controlled settings within universities, has been overstated and are therefore misleading. The findings of a subgroup analysis also contradict reported findings from research in strictly regulated settings.

English translation of parts of the full text here: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0803A&L=CO-CURE&P=R890&I=-3

http://translate.google.com should help further.
 
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It's from the link Biophile just provided. I added the tables here, because the tables for those sections weren't completely translated to English.
 

biophile

Places I'd rather be.
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8,977
How to exercise people with chronic fatigue syndrome: Evidence based practice guidelines. (Van Cauwenbergh et al, 2012)

Just adding the example to this thread, but see full details on the dedicated thread for this paper:

http://forums.phoenixrising.me/index.php?threads/scary-new-paper-on-cfs-and-exercise.17782

This systematic review presents itself as making evidence-based recommendations about what exercise CFS patients can do without significant exacerbation of symptoms, ie starting with 5-15 minutes of aerobic activity (walking, swimming, cycling) 5 times per week and increasing sessions to 30 minutes, but these conclusions seem to be based on presumptions and hypothetical goals in CBT/GET studies rather than evidence of what patients actually did. There are many patients who cannot even start at that level of exercise without consequences, and there is no convincing objective evidence that patients generally increase activity after CBT/GET anyway, the limited evidence available suggests no significant changes.

The authors even admit that there is limited or no evidence of compliance in these CBT/GET studies. They do have other important caveats about the generalizability of the results and the methodological weaknesses of the reviewed studies, but they don't go far enough. I compare the potential danger of this paper with that of the PACE Trial, where it will be presumed safe to increase activity as per rationale for these therapies, despite these studies not actually showing such occurred rather than just aimed for.

This new paper depends on self-reported fatigue and physical function only and does not review actigraphical data or employment outcomes etc. The paper also claims that the FINE Trial demonstrated significant improvements in both fatigue and physical function, but the FINE paper itself does not confirm this for physical functioning, and neither does the FINE authors' BMJ rapid response.
 

Enid

Senior Member
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3,309
Location
UK
Biopsychosocialists - what a name - still trying to hang in there - doesn't fool me (I doubt even the current slugs in the garden too which are much more specialised).
 
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The Great White Hope, spinning occupational outcomes re CBT-GET?

White did a presentation titled "What helps occupational rehabilitation when the doctor cannot explain the symptoms?" Dolphin posted the URL a few weeks ago (http://www.sou.gov.se/socialaradet/pdf/Peter Whites presentation.pdf).

Not particularly important, but I just noticed that this is not on-line. Anyone got a copy to paste up for biophile post? I've started trying to remember to save these things, or maybe I should start attaching them. The internet can change so often.