"Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial"

[duncan]

Well, you are being kind with "informal", and I approve, @Valentijn . Much of what I write - and all of my Math these days, it would seem - is informal.

 

[lansbergen]

Yes, it's bad English, but normal Dutch "Learn" and "teach" both use the same verb, and it's one which even expert English speakers will carry over from Dutch. They do exactly the same thing with "borrow" and "lend" and it drives me batty

Though interestingly, "I was learned" or "he learned him good" is used informally in American English, especially in the rural South.

It was not when I was at school. Learn you do yourself and somebody else teaches you how to do something.

 

[Valentijn]

It was not when I was at school. Learn you do yourself and somebody else teaches you how to do something.

Quality of English teachers doesn't seem to consistently be very good in (non-international) public schools. All teachers basically have to speak perfect Dutch, so even the English teachers are not native speakers of the language which they are teaching. This can result in some oddities regarding accents and phrases - Dutch rules can slip in where they would not with a native speaker.

 

[MeSci]

Yes, it's bad English, but normal Dutch "Learn" and "teach" both use the same verb, and it's one which even expert English speakers will carry over from Dutch. They do exactly the same thing with "borrow" and "lend" and it drives me batty

Though interestingly, "I was learned" or "he learned him good" is used informally in American English, especially in the rural South.

'Learned' is also an adjective, meaning having acquired much knowledge through study. So in that respect, 'CFS patients were learned' could be seen as a compliment!

 

[MeSci]

Well, it looks as though it should be the patients teaching the researchers. Did they use heart monitors? That's what the most 'learned' patients do. As @Effi said, pre-setting is not the way to go. We need to stop when we perceive the need to stop, whether or not we have achieved a particular duration or other goal. It is probably better to stop before we have reached our limit/anaerobic threshold. It takes a huge amount of self-discipline to learn and stick to this. The last thing we need is people telling us to push on, which is what many (most?) of us did for years anyway, hence the state we are in now.

The language-twisting is deliberate and effective. Can it be coincidence that the 'PACE' researchers called their research the 'PACE' trial? To make patients confuse it with pacing, as recommended by other patients? I encountered one who clearly had been confused, having a fear of pacing as she thought it meant something to do with the PACE Trials.

 

[Dolphin]

I'm not certain, but i think this might be the study proposal, which is useful until we have access to the full published paper:
https://clinicaltrials.gov/ct2/show/NCT01512342

Yes, I've read the paper and that looks like the trial though I can't see any code on the paper itself.

There was no mention of this outcome measure (copied from protocol)

the change in autonomic activity at rest and following 3 activities of daily living [ Time Frame: measured at baseline (week 1) and post-treatment (week 5) ] [ Designated as safety issue: No ]
The 3 activities of daily living entail writing a standardized test on a laptop computer, ironing, and climbing 26 flights of stairs. For measuring autonomic activity, the Nexus 10 device (Mind Media, the Netherlands) will be used. Skin conductance, body temperature, heart rate, blood volume pressure and heart rate variability will be measured continuously in real time during a 2 minutes period, with the patient sitting on a chair (back supported and hands resting on legs). Electrodes will be placed on the left hand in all patients.

Maybe this data will be published in a separate paper, or maybe we'll never see it?

 

[Dolphin]

It describes the nature of the pacing strategy they used:

Experimental: Pacing
The pacing self-management program focussed on teaching the patient to estimate their current physical capabilities prior to commencing an activity. In order to appropriately pace activities (daily activities and exercise bouts), CFS patients were learned to estimate their current physical capabilities prior to commencing an activity, keeping in mind the regular fluctuating nature of their symptoms. The activity duration used within the program was less than that reported by the patient so to account for typical overestimations made by the patient. Each activity block was interspersed with breaks, with the length of this break equating to the duration of the activity.

Here's a more detailed description from the paper:

Intervention

Activity Pacing Self-Management.

The APSM program consists of a stabilization phase and a grading phase (Nijs, Paul, & Wallman, 2008; Nijs et al., 2009). The stabilization phase focuses on coaching clients in how to perform daily life activities within the limits of their actual capacity.Daily life activitieswere defined as all responsibilities and desired activities in the areas of personal and child care, domestic care, productivity,and leisure. To appropriately pace activities, participants were instructed to estimate their current physical and mental capabilities (in terms of activity duration) before commencing an activity, keeping in mind the fluctuating nature of their symptoms.

The activity duration advised within the program was 25%–50% lower than the capacity participants reported to account for any overestimations. Each activity block was interspersed with breaks, with the length of each break equal to the duration of the activity.Breakswere defined as relative periods of rest, with the participant just relaxing or performing a different type of light activity. The emphasis on breaks is based on the observation that recovery from physical exertion is prolonged in people with CFS (Ickmans, Meeus, De Kooning, Lambrecht, & Nijs,2014; Ickmans, Meeus, De Kooning, Lambrecht, Pattyn, & Nijs, 2014; Paul, Wood, Behan, & Maclaren, 1999). The process of restructuring activity patterns involves significant behavioral change for people with CFS, and facilitation of this process can be beneficial (Abraham & Michie, 2008). Participants received education in the form of a booklet with evidence-based information on factors influencing fatigue and strategies to cope with fatigue and pace activities. Participants were asked to keep a diary recording the type of activity and time spent on all activities throughout the day during 7 days to increase their awareness and guide implementation of coping strategies.

Once clients are able to control their daily life activities without excessive feelings of fatigue, the grading phase can start. In this phase, activity and exercise level are increased gradually. Participants conferred with the therapist to set relevant and achievable personal activity and exercise goals, based on the prioritized activities reported in the COPM and diary results (e.g., “During two of my lunch breaks next week, I will walk for 400 m” or “For 2 days next week, I will prepare a warm meal in two time slots [preparation in the morning, finalization in the late afternoon]”). Strategies to reach these goals were discussed and performed in real life between two sessions. During the next session, participants reflected on activity performance, facilitators, and barriers and adapted their strategies and goals accordingly, whenever relevant and appropriate.

 

[Dolphin]

So there were two stages to the intervention: a stabilisation period and then when that was achieved, a grading phase.

But there were only three sessions, so the earliest the grading phase would have happened would presumably be the second session.

The trial was only four weeks in total (week 1 to week 5). It doesn't give much time to do much grading: indeed, I imagine some people probably didn't do any grading at all. So too short to properly assess this intervention I think.

 

[Dolphin]

No mention of actometers anywhere.

 

[Dolphin]

I don't recall seeing the COPM being used as an outcome measure in ME/CFS research before (that doesn't mean it's worse than others)

The COPM is a standardized outcome measure frequently used by occupational therapists to assess clients’ perceived performance of and satisfaction with relevant daily life activities (Law et al., 2005). Using a semistructured interview, the therapist explores problems in performing daily activities in the domains of self-care, productivity, and leisure. The mean score for all activities in the Performance and Satisfaction subscales is calculated. At follow-up, clients rescore the same activities, blinded to earlier scores. The COPM is a reliable, valid, and responsive instrument, and change scores of 1.4 for Performance and 1.9 for Satisfaction are considered clinically important (Carswell et al., 2004; Dedding, Cardol, Eyssen, Dekker, & Beelen, 2004; Eyssen, Beelen, Dedding, Cardol, & Dekker, 2005; Eyssen et al., 2011).

 

[Dolphin]

The authors do mention that the trial was short, though they only mention that the participants could have done better with more time while I would argue that with more time to increase activity, there could have been more problems for some participants:

It was to be expected that performance of daily life activities would not have reached the most optimal levels immediately after the intervention. More time than the intervention period of 3 wk used in this study may have been necessary for participants to make the practical arrangements required to maximize performance (e.g., acquisition of needed equipment, alterations in work schedules, installation of home adaptations). With a longer treatment program or a longer follow-up period, we might have observed the evolution of Performance scores. However, participants in this study entered a multidisciplinary rehabilitation program after the reassessment, and therefore follow-up scores would have been contaminated by the additional intervention.

 

[Dolphin]

Activity pacing self-management uses the principle of activity pacing but incorporates a grading phase to gradually increase activity and exercise levels. Still, more studies comparing the effects of activity pacing with established CFS treatments like GET and CBT are warranted. However, we advocate APSM not as a stand-alone treatment for CFS, but rather as part of a multidisciplinary rehabilitation program that also includes comprehensive client education, counseling, exercise therapy, and stress management and sleep management interventions (Goudsmit et al., 2012; Nijs, Mannerkorpi, Descheemaeker, & Van Houdenhove, 2010).

 

[Sean]

Intervention

Activity Pacing Self-Management.

The APSM program consists of a stabilization phase and a grading phase (Nijs, Paul, & Wallman, 2008; Nijs et al., 2009). The stabilization phase focuses on coaching clients in how to perform daily life activities within the limits of their actual capacity.Daily life activitieswere defined as all responsibilities and desired activities in the areas of personal and child care, domestic care, productivity,and leisure. To appropriately pace activities, participants were instructed to estimate their current physical and mental capabilities (in terms of activity duration) before commencing an activity, keeping in mind the fluctuating nature of their symptoms.

The activity duration advised within the program was 25%–50% lower than the capacity participants reported to account for any overestimations. Each activity block was interspersed with breaks, with the length of each break equal to the duration of the activity.Breakswere defined as relative periods of rest, with the participant just relaxing or performing a different type of light activity. The emphasis on breaks is based on the observation that recovery from physical exertion is prolonged in people with CFS (Ickmans, Meeus, De Kooning, Lambrecht, & Nijs,2014; Ickmans, Meeus, De Kooning, Lambrecht, Pattyn, & Nijs, 2014; Paul, Wood, Behan, & Maclaren, 1999). The process of restructuring activity patterns involves significant behavioral change for people with CFS, and facilitation of this process can be beneficial (Abraham & Michie, 2008). Participants received education in the form of a booklet with evidence-based information on factors influencing fatigue and strategies to cope with fatigue and pace activities. Participants were asked to keep a diary recording the type of activity and time spent on all activities throughout the day during 7 days to increase their awareness and guide implementation of coping strategies.

Once clients are able to control their daily life activities without excessive feelings of fatigue, the grading phase can start. In this phase, activity and exercise level are increased gradually. Participants conferred with the therapist to set relevant and achievable personal activity and exercise goals, based on the prioritized activities reported in the COPM and diary results (e.g., “During two of my lunch breaks next week, I will walk for 400 m” or “For 2 days next week, I will prepare a warm meal in two time slots [preparation in the morning, finalization in the late afternoon]”). Strategies to reach these goals were discussed and performed in real life between two sessions. During the next session, participants reflected on activity performance, facilitators, and barriers and adapted their strategies and goals accordingly, whenever relevant and appropriate.

The hair-splitting phase of the backdown.

'We are so close. Just the right tweaking and the magic theory will work. It must. We can't possibly be so wrong.'

 

[Sean]

Might actually be more accurate to describe it as the bargaining phase of the grieving process.

 

[MeSci]

The 3 activities of daily living entail writing a standardized test on a laptop computer, ironing, and climbing 26 flights of stairs.

(My emphasis)

Do they really mean 26 flights of stairs? Or 26 stairs?

 

[Sasha]

Haven't read this, but is this yet another trial of physical activity in PWME that takes no account at all of the biophysiologial work done by Staci Stevens, Mark Van Ness and the rest on what happens when we go over our aerobic thresholds? I.e. that the idea ought to be to stay below our aerobic thresholds and train up the anaerobic system?

 

[MeSci]

Participants conferred with the therapist to set relevant and achievable personal activity and exercise goals, based on the prioritized activities reported in the COPM and diary results (e.g., “During two of my lunch breaks next week, I will walk for 400 m” or “For 2 days next week, I will prepare a warm meal in two time slots [preparation in the morning, finalization in the late afternoon]”).

I didn't know, or couldn't remember, what COPM was, so looked it up:

http://www.thecopm.ca/

It seems to be mostly about parents, teachers and children.

 

[Sean]

(My emphasis)

Do they really mean 26 flights of stairs? Or 26 stairs?

Yeah, I was wondering about that too.