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Band, Wearden et al: Activity Patterns in Response to Symptoms in Patients Being Treated for CFS

Dolphin

Senior Member
Messages
17,567
Another quote showing where they are coming from:
Both of these therapies [CBT and pragmatic rehabilitation] involve a gradual and programmed increases in activity and may result in breaking the link between experiencing symptoms and activity levels, thus modifying patient beliefs and behavioral responses that are thought to perpetuate CFS (Moss-Morris et al., 2013).
One problem for them is that evidence suggests on average there isn't any more extra activity in the CBT group compared to a control group. Not sure we or they have any data on pragmatic rehabilitation except that in the FINE Trial, the step test results were not better for the pragmatic rehabilitation group.
 

worldbackwards

Senior Member
Messages
2,051
Both of these therapies [CBT and pragmatic rehabilitation] involve a gradual and programmed increases in activity and may result in breaking the link between experiencing symptoms and activity levels, thus modifying patient beliefs and behavioral responses that are thought to perpetuate CFS (Moss-Morris et al., 2013).
I've had periods where I "broke the link" between activity and symptoms. However, the result of this was not that the symptoms disappeared, it was just that I was no longer attributing them to activity levels.

Unsurprisingly, it didn't end well.
 

Dolphin

Senior Member
Messages
17,567
These results support the cognitive– behavioral maintenance model for CFS (Chalder et al., 2002; Deary et al., 2007; Surawy et al., 1995) by demonstrating that patient activity management is, at least to some extent, driven by symptom experiences.
Other models and management systems for CFS would also suggest that patient activity is driven by symptom experiences e.g. pacing and energy envelope.

It doesn't prove causation i.e. that just because patients behave in this way it doesn't prove that the illness is maintained by this behaviour. And indeed evidence from the PACE Trial suggests that recovery doesn't follow after CBT, which is some evidence that breaking the link won't ensure that the illness will resolve.
 

Dolphin

Senior Member
Messages
17,567
The association among positive affect, fatigue-related symptom severity, pain, and activity limitation may potentially reflect underlying patient beliefs that limiting activity (i.e., resting) is a beneficial strategy for coping with increased symptom severity or pain.
Who says it is in the beneficial strategy? The authors may believe it isn't but that hasn't been proven.
 

Dolphin

Senior Member
Messages
17,567
Limitations
However, the limitations associated with some of the items included within the current study must be acknowledged. First, pain was assessed by a single item at each assessment, and although fatigue-related severity was assessed using four items relating to common experiences of fatigue, fatigue was not included as an item. Second, those items relating to activity limitation required patients to report on their behavior (e.g., are they limiting activity in that moment) and make a judgment relating to that behavior (e.g., is this to control their symptoms), thereby confounding beliefs about symptoms and symptom management with reports of activity. This was a design flaw of the study, which arose because, to provide some comparability with other studies, items from the cognitive– behavioral response questionnaire (a measure of patient activity management) were used. Future studies would benefit from including objective measures of activity, which are separate from measures of patient beliefs about activity. Including pure activity measures would assist us to further develop a theoretical understanding of the dynamic relationships between symptoms and activity. In addition, utilization of mobile-health capabilities, such as incorporating ESM studies alongside established treatment programs, would also enable assessment of the potential mechanisms of change during treatment (Ritterband, Thorndike, Cox, Kovatchev, & Gonder-Frederick, 2009). For example, it would be possible to examine whether hypothesized changes in cognitions are responsible for changes in activity management behaviors (Knoop et al., 2010).
 

worldbackwards

Senior Member
Messages
2,051
Future studies would benefit from including objective measures of activity, which are separate from measures of patient beliefs about activity. Including pure activity measures would assist us to further develop a theoretical understanding of the dynamic relationships between symptoms and activity
I wonder what happened to that. Could it be that it didn't tell them what they thought it would? Surely not.
 

Dolphin

Senior Member
Messages
17,567
More of them wanting to disassociate activity from symptoms being experienced (or recently experienced).
Combining this with clearly defined cognitive– behavioral components could form the basis for building an interactive digital intervention (Nahum-Shani et al., 2015) to help patients to understand their activity patterns and disassociate activity from symptom experiences or affect. For example, in response to current reports of symptom severity, such an intervention might guide patients to address unhelpful activity beliefs using cognitive– behavioral strategies (White et al., 2011) before they engage in prolonged periods of activity limitation. Likewise, prompts could be delivered to engage patients in graded activities in accordance with a predetermined, agreed, and acceptable activity schedule, with additional alerts and reminders programmed using algorithms for all-or-nothing or activity limitation type activity patterns.
 

Dolphin

Senior Member
Messages
17,567
Conclusions

The current findings suggest that two unhelpful activity management patterns [Dolphin: activity limitation is not necessarily unhelpful] in CFS arise as a result of patient symptom experience and affect. Although the results reported here must be interpreted tentatively given the small sample size; combining ESM with mobile health enabled us to demonstrate that it is feasible to examine these complex associations between known perpetuating factors in CFS [Dolphin: they aren't necessarily perpetuating factors at all] in the context of daily life. In further developing a complex understanding of the interrelations between these variables, it may be possible to pinpoint when the unhelpful behavioral patterns begin [Dolphin: again, they are not necessarily unhelpful]. Future studies may utilize m-health capabilities to not only develop theoretical understanding of maintenance of CFS symptoms [Dolphin: this study does not prove that certain behaviours maintain CFS symptoms], but to work toward interactive digital interventions to enact symptom improvement [Dolphin: CBT and pragmatic rehabilitation-related techniques won't necessarily enact symptom improvement].

I also find it a bit creepy that in the future the activity of people with ME/CFS could be tracked remotely using technology and that they could receive live feedback to make them "behave" in the "correct" way.
 

worldbackwards

Senior Member
Messages
2,051
For particular symptoms eg pain I think most of us learn some skills to block it out and carry on. if this lasts longer than just a way to get through a few hours it ends badly in my hard won experience. ..
What I mean is: pushing forwards, seeing symptoms getting worse, think "oh, why is that happening?" and carry on as before. Forgetting about it for a time is standard. To delude oneself for a matter of months whilst taking the consequences requires idiocy of an entirely different order, with results of a similar magnitude.

This, according to Wearden and co, is the point we have to reach: to thoroughly disable ourselves and no longer care, because IT IS WRITTEN. And, as far as I can make out, they won't be happy unless we enjoy it as well. Embrace the positive affect of severely affected!
 

ash0787

Senior Member
Messages
308
Sigh, I thought this was maybe going to be about trying to test for physiological changes coinciding with PEM onset.

I also find it a bit creepy that in the future the activity of people with ME/CFS could be tracked remotely using technology and that they could receive live feedback to make them "behave" in the "correct" way.

Possibly one function of the UKs Investigatory Powers Bill, I was more thinking they might use it to assess disability levels and eligibility for welfare though
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@worldbackwards I see what you mean. They are saying we shouldn't build up our own picture of cause and effect despite being all too aware of symptoms. This is different from mentally blocking out symptoms.

according to Wearden and co, is the point we have to reach: to thoroughly disable ourselves and no longer care, because IT IS WRITTEN. And, as far as I can make out, they won't be happy unless we enjoy it as well. Embrace the positive affect of severely affected!
This seems to require religious adherence. The cannon of BPS says it is so and only the dirty heathens question it. To be fair they probably believe they're right for most people so don't expect us to become severely disabled as a result (and if we do relapse that is entirely coincidental).

One of the many flaws (for those of us lacking the gift of faith) is that boom and bust as an activity pattern is clearest before diagnosis, when we couldn't have acquired false illness beliefs as a cultural meme because we didn't know what was wrong.
 

Sean

Senior Member
Messages
7,378
I also find it a bit creepy that in the future the activity of people with ME/CFS could be tracked remotely using technology and that they could receive live feedback to make them "behave" in the "correct" way.
Possibly one function of the UKs Investigatory Powers Bill, I was more thinking they might use it to assess disability levels and eligibility for welfare though
They will use it for whatever gain they can squeeze from it.

Combine the sort of psycho-drama fantasy conjured up in this paper (on the basis of just 23 subjects), with those levels of surveillance, can only be very bad news for all, especially those already down the bottom with no power to fight back.

If they don't give a shit about the elderly, they certainly won't give a shit about us. It's a cull:

https://www.theguardian.com/society/2016/nov/26/nhs-elderly-care-close-to-collapse
 

Cinders66

Senior Member
Messages
494
I just think their mind games are dangerous nonsense. This type language only makes sense if you are really treating deluded or obsessive or unduly anxious people in the way you might try to overcome a phobia. Likewise the assumption regarding graded activity being generally possible only is made If you don't think your patients have organic illness. People with ME are sick with demonstrateBle illness which I don't see recognised here. I'd have time for psychological researchers if they recognised their place in the illness but not the uk BPS school who don't even look at research outside their own field
 
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worldbackwards

Senior Member
Messages
2,051
I also find it a bit creepy that in the future the activity of people with ME/CFS could be tracked remotely using technology and that they could receive live feedback to make them "behave" in the "correct" way.
Little electric shock maybe? Just to keep them on the straight and narrow? Little message flashing up on a phone app, saying "Don't sit in that chair, Mabel, there's work to do!" *ZAP!* and a puff of smoke rising up.

All these apps are making me feel pretty smug as to not having a mobile phone, given that I'm not mobile and nobody phones me.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Other models and management systems for CFS would also suggest that patient activity is driven by symptom experiences e.g. pacing and energy envelope.

It doesn't prove causation i.e. that just because patients behave in this way it doesn't prove that the illness is maintained by this behaviour. And indeed evidence from the PACE Trial suggests that recovery doesn't follow after CBT, which is some evidence that breaking the link won't ensure that the illness will resolve.

Yes it's like they're deliberately ignoring Jason et al...