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

Here is an example of what they recommend in their manual (this manual isn't specifically mentioned in this study). I think it is completely reckless but imagine that very few patients actually try to stick to it for very long:
Because passive CFS patients are hardly active anymore, they start their activity program as soon as possible. Most of them will choose walking as a buildingup activity. The directive here is to start with a 1-minute walk six times a day. Every day the walking time is increased by 1 minute. So, for example, the first day the patient has six 1-minute walks, the second day six 2- minute walks, the third day six 3-minute walks, and so on. The aim is a total build-up of 5 minutes a week for each walk a day, allowing the patient to skip a day or to refrain from raising the duration.

Bazelmans E, Prins JB, Bleijenberg G. Cognitive behavior therapy for relatively active and for passive CFS patients. Cogn Behav Pract. 2006;13:157-166.
Click to expand...
 
Valentijn said:
View attachment 1644

This seems to be saying that full adherence was very low?
Click to expand...
Yes, the text confirms this:

A total of, 4 of 80 (5%) patients in the protocol-driven condition and 6 of 80 (8%) in the on-demand condition did not start the intervention. Without taking the relapse module into account, 39 (49%) patients in the protocol-driven condition were adherent to following our criteria of emailing fortnightly and having opened all modules. Of the patients in the on-demand condition, 74 (93%) were adherent to following our criterion of having opened all modules. When the relapse module was taken into account, this percentage dropped considerably to 16 and 19%, respectively (see supplementary Table 3).
Click to expand...
 
These people were a lot healthier at baseline than for example the people in the PACE trial.

Average SF-36 physical functioning (0-100) score:
PACE trial: 38.05
This trial: 62.5

Average Chalder fatigue questionnaire (0-33) score:
PACE trial: 28.2
This trial: 24.1
 
Dolphin said:
I find this a bit bizarre. They tend to make grand claims about CBT yet here they downplay a positive result.
Click to expand...

I wondered about that. It felt like there was something missing there.

Missing data for appx 25% of the protocol-driven group and the control group, isn't great, but it was down to 15% missing for the feedback on demand group.

Maybe there is some sub-group for whom a minimal form of CBT, with little involvement of a therapist, could be useful? Maybe that would make it easier for people to make use of any bits they found useful, and dismiss the rest?

Also - maybe these studies are getting increasingly unrepresentative samples that include those more likely to benefit from some sort of CBT-style intervention? Or maybe a wait-list control is demoralising and is worse than nothing?

So hard to say. These researcher's history of hyping and misrepresenting CBT as a treatment for CFS gives rise to some justified scepticism of any purported positive results. [edit: but if were were to take them at face value and ignore possible problems with a wait list control, the actimeter results for the on-demand CBT group look better than what we tend to see].

Dolphin said:
I find it interesting to see the individual data in studies, like they have given here. Though I would have been more interested in other outcome measures than fatigue.
Click to expand...

Yes - would be interesting to see the acitgraphy data.
 
Dolphin said:
Here is an example of what they recommend in their manual (this manual isn't specifically mentioned in this study). I think it is completely reckless but imagine that very few patients actually try to stick to it for very long:
Click to expand...
The Dutch fatigue clinic I went to rated me as "passive" based on my actometer data, but I was also crashing a lot like a boom-and-bust "relatively active" patient. So the psychologist and relaxation therapist (who used stealth-GET) were telling me I needed to do more, while the occupational therapist and physiotherapist were more focused on stabilization. They really don't have any conception of disease severity - it's just one type of crazy (passive) or a contradictory type of crazy (boom-and-bust) which somehow has the same cause and needs pretty much the same treatment :confused:

Esther12 said:
Also - maybe these studies are getting increasingly unrepresentative samples that include those more likely to benefit from some sort of CBT-style intervention? Or maybe a wait-list control is demoralising and is worse than nothing?
Click to expand...
I think these are both factors. My observation was that most patients at Dutch fatigue clinics do not have ME/CFS. Out of the 1-2 dozen I saw regularly in the waiting rooms, only 2-3 of us were moderate or worse. The rest were either very mild or had a different form of fatigue which was not physically disabling them at all.

And giving worse scores on questionnaires may be a desperate plea for immediate help from waiting list patients who think there is an effective treatment available.
 
Dolphin said:
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.
Click to expand...
I also wonder how they ascertain from a distance how closely people are adhering to what they are actually being asked to do. How do they know, for instance, that the CBT sessions aren't in fact resulting in people learning how to pace themselves better.
 
This study is a bit of a head scratcher for me. One of the main (highly legitimate) criticisms of these trials is the lack of objective measures. Yet here the authors appear to have a statistically significant result when using activity monitors but tend to downplay that in the text. I find that puzzling - if I were the authors that would be plastered all over the page.

(I suspect the positive result is due to selection criteria - as others have already noted above - but need to spend more time with the paper. Though as I’m being dragged into the office today against my will there’s a good chance that’ll have to wait until after my resulting crash :grumpy:)
 
Londinium said:
Yet here the authors appear to have a statistically significant result when using activity monitors but tend to downplay that in the text. I find that puzzling - if I were the authors that would be plastered all over the page.
Click to expand...
The Dutch BPS group engage in some interesting shenanigans at times, like declaring completely untreated patients cured by CBT. They might be downplaying actometer results to avoid further scrutiny.
 
(Not very exciting) From the protocol paper:
The cognitive behavioural therapist who performs the intake will also deliver the web-based CBT. Test assistants will do all assessments. Therapists and test assistants are not blinded with respect to condition. This will most probably not introduce a bias as there is no contact between test assistants and patients following randomization. The test assistant sends a link via email to the patient, patients will fill in the questionnaires at home.
Click to expand...
 
From the protocol paper:
Patients can send emails and have chat sessions with their therapists. Patients can also view interview excerpts with recovered CFS patients who share their experiences with web-based CBT. In these excerpts, patients explain the different elements of the treatment and talk about their experience with the intervention.
Click to expand...
Firstly, I doubt a lot of these are truly recovered.
Also there is no sign that participants hear from patients who believe some or all of the programme made them worse.
 
From the protocol paper:
In both conditions the therapist will respond within five working days after the patient sent an email. When practical problems with the program occur or when communication between therapist and patient is not sufficient to resolve a specific problem via email or by chatting, telephone contact will be offered to the patient.
Click to expand...
 
Valentijn said:
The Dutch fatigue clinic I went to rated me as "passive" based on my actometer data, but I was also crashing a lot like a boom-and-bust "relatively active" patient. So the psychologist and relaxation therapist (who used stealth-GET) were telling me I needed to do more, while the occupational therapist and physiotherapist were more focused on stabilization. They really don't have any conception of disease severity - it's just one type of crazy (passive) or a contradictory type of crazy (boom-and-bust) which somehow has the same cause and needs pretty much the same treatment :confused:
Click to expand...
That's interesting.

According to the protocol, somebody with a low level of activity is not supposed to go to a stabilisation period even though they could be fluctuating, but just at a lower level of activity.

From the protocol paper:

Low active versus relative active

With data from the actometer, two activity patterns can be discerned: a low activity pattern and a relatively active pattern. The individuals' activity patterns will be based on the 12 daily physical activity scores (van der Werf, Prins, Vercoulen, van der Meer, & Bleijenberg, 2000). Two physical activity patterns can be discerned. The average daily physical activity scores of low active patients stay below the general mean physical activity of CFS patients in at least 11 of 12 days. Relative active patients score at least 2 of 12 days above the mean physical activity score of CFS patients. Relative active patients have fluctuating activity levels with bursts of activity followed by (prolonged) periods of rest [18]. In case of missing actometer data at baseline, therapists will determine the activity pattern by using a structured interview [21].

In accordance with the CBT protocol for face-to-face therapy, we developed a low active and a relatively active variant of the two web-based CBT formats. Low active patients will start with a graded activity program early in therapy. Relatively active patients will first learn to spread their activities more evenly before starting the graded activity program. Following Stulemeijer [22] we do not expect different treatment outcomes for low or relatively active patients.
Click to expand...
 
Last edited:
Dolphin said:
From the protocol paper:
View attachment 1691
signing treatment contract and establish goals that if attained implies that a patient no longer has CFS.
Click to expand...
Adherence, drop-out, and treatment integrity

Patients are assumed to have started with the treatment after they logged in on the Internet portal three times or more and have established goals for therapy on the goal sheet of the first module.
Click to expand...
It would be interesting to have data on these goal sheets and for an independent person to assess whether patients had reached such goals. I don't believe the Dutch CBT school ever discuss these goal sheets in terms of outcomes in published papers.
 
You must log in or register to reply here.
Back
Top Bottom