Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial (2018) Knoop

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This seems to be saying that full adherence was very low?

Yes, it looks like a lot did not do their 'preventing relapse' module.

What is "protocol-driven" and "on demand"? Does protocol-driven mean: Click according to a plan; and on-demand: whenever you feel like it? - Ah, yes.

The protocol driven iCBT had requirements for participants to do things by a certain time, and they'd have therapists get in contact at regular intervals. The on demand iCBT was more hands off. They expected protocol driven iCBT to be more effective than on demand iCBT, but they were both the same.

What did they say about the actometer?

I cut out the bits I saw under this section of my longer post. I may have missed some from tables, etc, but there didn't seem to be much info, and it looked like some info that was supposed to be in their supplementary material was missing:

"I don't really understand what was happening with their actigraphy, why they were not planning to assess results, and why they then did. The mentions it gets:"
https://www.s4me.info/threads/efficacy-of-web-based-cognitive–behavioural-therapy-for-chronic-fatigue-syndrome-randomised-controlled-trial-2018-knoop.2224/#post-40417
 
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To put the actometer results in some context:
The Actometer is described in more detail by van der Werf et al. (2000). They found a significant difference between the mean Actometer score of CFS patients which was 66 (S.D.=22) and healthy controls who had a mean Actometer score of 91 (S.D.=25).

How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity
J. F. Wiborg*, H. Knoop, M. Stulemeijer, J. B. Prins and G. Bleijenberg
Expert Centre Chronic Fatigue and Department of Medical Psychology, Radboud University Nijmegen Medical Centre, The Netherlands
Psychological Medicine, Page 1 of 7. Cambridge University Press 2010
 
The treatment is tailored to a patient’s current activity pattern as assessed with actigraphy.

It's not really that tailored:
Dependent on the activity pattern of patients(5) that was assessed at basseline, tailored information was provided on how to proceed with a graded activity program. Two patterns can be discerned: a low active and a relative active pattern. Patients with a low active activity pattern, characterized by an extremely low level of physical activity, immediately start to gradually increase their activity with walking or cycling. Relative active patients, characterized by an ‘all-or-nothing pattern’ of activity, first have to learn to divide their activities more evenly accross the day before they start with graded activity. For patients with a high impact of pain, information was provided on how to deal with pain by formulating helpful beliefs. All patients learn how to solve problems with the graded activity program. The graded activity was followed by a step by step realisation of goals. This included work or study resumption, increasing mental and social activities and other goals.
 
How long until the computerized Lightning Process?
It can already be done, known as electroshock therapy.
Then again they may invent a home version, you connect it to the internet and the doctor electrocutes your brain remotely.

Finally they may become unhinged enough to steer people to the "natural" version, telling patients to walk outside during thunderstorms :emoji_face_palm:
 
Not alone are participants with CFS told not to rest during the day but they shouldn't lie down!

Wow. These people are special. They'll freak out when they find out some people do relaxation as part of CBT lying down. No recumbent cycling as part of your GET either. No yoga. No stretching. Zero tolerance to the horizontal.
 
Another deviation of the original study protocol was the decision not to determine quality-adjusted life-years; because of limited resources we were unable to perform a cost-effectiveness study. The quality of life questionnaire (the EQ-6D)27 was, however, still part of the assessment battery.
A bit disappointing they don't calculate the DALYs considering they have the data.

But then they don't even give the results for the EQ-6D unless they are going to be in another paper.
 
However, we expected more improvement in primary and secondary outcomes following iCBT with protocol-driven feedback than following iCBT with feedback on demand.
I wonder how interesting it is that the protocol-driven feedback didn't do better and indeed on the SF 36 physical functioning subscale, only the feedback on demand group was statistically better than the waiting list group (i.e. the protocol-driven feedback group wasn't).
 
One could argue that the use of a waiting-list control does not control for non-specific therapy factors and limits the external validity. However, a meta-analysis that studied active placebo conditions for CFS did show low responses,35 as was also true for standardised specialistmedical care.34

34 White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al.
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded
exercise therapy, and specialist medical care for chronic fatigue syndrome
(PACE): a randomised trial. Lancet 2011; 377: 823–36.
35 Cho HJ, Hotopf M, Wessely S. The placebo response in the treatment of chronic
fatigue syndrome: a systematic review and meta-analysis. Psychosom Med
2005; 67: 301–13.
I criticised this point about a lower placebo response reported in that paper in this thread:
http://forums.phoenixrising.me/inde...ic-review-meta-analysis-cho-et-al-2005.46408/
 
A post hoc analysis showed that objectively assessed physical activity significantly increased after iCBT. However, this might be an accidental finding, taking the amount of missing data into account and previous research that did not find an increase in physical activity following CBT.36
I find this a bit bizarre. They tend to make grand claims about CBT yet here they downplay a positive result.
 
More men participated in this study as compared with other CBT for CFS trials. This can be explained by the inclusion criteria of another study that only included female patients with CFS22 out of the same pool of patients. There were no indications that gender was correlated with treatment outcome.
 
The last CBT module was on how to learn to ‘deregulate’ oneself again, e.g. by having peaks of activity or going to bed late at night again. In this phase patients determine if they are recovered from CFS and how they can maintain the gains they have made.
This all seems a bit risky to me given that the chances are people won't recover after a CBT program.

I wonder how many people actually follow instructions like this.
 
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