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

[mango]

Activity Patterns in Response to Symptoms in Patients Being Treated for Chronic Fatigue Syndrome: An Experience Sampling Methodology Study

Band R, Barrowclough C, Caldwell K, Emsley R, Wearden A.

Health Psychol. 2016 Nov 7. [Epub ahead of print]
DOI: 10.1037/hea0000422

Abstract
Objective:
Cognitive-behavioral models of chronic fatigue syndrome (CFS) propose that patients respond to symptoms with 2 predominant activity patterns-activity limitation and all-or-nothing behaviors-both of which may contribute to illness persistence. The current study investigated whether activity patterns occurred at the same time as, or followed on from, patient symptom experience and affect.

Method:
Twenty-three adults with CFS were recruited from U.K. CFS services. Experience sampling methodology (ESM) was used to assess fluctuations in patient symptom experience, affect, and activity management patterns over 10 assessments per day for a total of 6 days. Assessments were conducted within patients' daily life and were delivered through an app on touchscreen Android mobile phones. Multilevel model analyses were conducted to examine the role of self-reported patient fatigue, pain, and affect as predictors of change in activity patterns at the same and subsequent assessment.

Results:
Current experience of fatigue-related symptoms and pain predicted higher patient activity limitation at the current and subsequent assessments whereas subjective wellness predicted higher all-or-nothing behavior at both times. Current pain predicted less all-or-nothing behavior at the subsequent assessment. In contrast to hypotheses, current positive affect was predictive of current activity limitation whereas current negative affect was predictive of current all-or-nothing behavior. Both activity patterns varied at the momentary level.

Conclusions:
Patient symptom experiences appear to be driving patient activity management patterns in line with the cognitive-behavioral model of CFS. ESM offers a useful method for examining multiple interacting variables within the context of patients' daily life. (PsycINFO Database Record

https://www.ncbi.nlm.nih.gov/pubmed/27819461

 

[worldbackwards]

So some patients pace themselves better than others and Alison Wearden Doesn't Like It Whatever They Do.

Nothing new there then.

 

[Snowdrop]

Read it. Translated it: blah, blah, blah, blah. . .

 

[worldbackwards]

In contrast to hypotheses, current positive affect was predictive of current activity limitation whereas current negative affect was predictive of current all-or-nothing behavior.

One suspects that a hypothesis that can't understand why patients in control of their illness would be happier than patients making themselves sick all the time isn't up to much.

 

[user9876]

There could be something interesting in the data but I wouldn't trust Wearden's conclusions give her history of misleading people over Fine results.

6 days with 22 patients doesn't really seem enough to form good trend data.

 

[A.B.]

Patient symptom experiences appear to be driving patient activity management patterns in line with the cognitive-behavioral model of CFS.

Is there anything that is not in line with the cognitive-behavioural model? Any correlation that the authors can fantasize about being causative seems "good enough".

What about, you know, actually doing some science rather than creative writing and putting this idea to the test? Oh, wait, the hypothesis that thoughts lead to sickness inducing behaviour is untestable, therefore unfalsifiable, and therefore unscientific.

You know "negative thoughts" and altered behaviour could merely be a consequence of illness.

 

[Woolie]

Free article, so you can all savour its wisdom at your leisure:

http://psycnet.apa.org/psycarticles/2016-53764-001.pdf

This is funny:

"all or nothing behaviour" is defined as "being intensely active when they are feeling well" It is measured by asking people to rate how much they do two things:
1. “rushing to get things done while I feel able”
2. “doing things while I can”

They loaded onto the same factor, which I think might be better called "Not curling up into an entire ball and giving up on life, but rather trying to make some use out of good periods". Or perhaps even "deciding that I might need to use that good day every 6 days to have a bath".

I love how we are judged whether we do nothing, or try to to something. Is all dysfunctional to them.

 

[Woolie]

Oh, and some other insights of great value:

The results show that we limit our activities more when we feel more severe physical symptoms and/or pain! We don't do so because we feel emotionally negative.

Wow, that's genius stuff!

We do the "Not curling up into an entire ball and giving up on life, but rather trying to make some use out of good periods" thing when we have less physical symptoms/pain.

Utter brilliance!

They were hoping to find that our behaviour patterns were driven by our moods, but this was not the case, They were driven by our current and/or recent health state (what an astonishing finding!!!). They hoped to find that feeling down would cause us to spend more time in bed in the period ensuing, and that feeling good would push us into this incredibly dysfunctional behaviour where we actually try to do some simple things. But this was either not the case or it was the opposite. Feeling low was likely to be followed by doing things (but generally only when symptoms/pain were low too).

They said "... in further contrast to study hypotheses, higher negative affect predicted more all-or-nothing behavior at the current assessment"

Then at the end its all spun as a win.

 

[Woolie]

In conclusion of abstract:

Patient symptom experiences appear to be driving patient activity management patterns in line with the cognitive–behavioral model of CFS.

Note the sly wording here.

Of course, these results do not support the cognitive-behavioural model. What is unique about that model is the role it proposes for mood and cognitions in determining behaviours. No evidence was found to support this crucial tenet of the model.

But the wording cleverly says "In line with". They are essentially admitting that any pattern of results in this study can be interpreted as being in line with this model, even when they are the opposite to what we actually hypothesised using the model. In other words, the model is unfalsifiable.

The results were simply what you might expect of anyone with a fluctuating chronic illness.

 

[worldbackwards]

In conclusion of abstract:

Patient symptom experiences appear to be driving patient activity management patterns in line with the cognitive–behavioral model of CFS.

Note the sly wording here.

Of course, these results do not support the cognitive-behavioural model. What is unique about that model is the role it proposes of mood and cognitions in determining behaviours. No evidence was found to support this crucial tenet of the model.

Butt the wording cleverly says "In line with". They are essentially admitting that any pattern of results in this study can be interpreted as being in line with this model, even when they are the opposite to what we actually hypothesised suing the model. In other words, the model is unfalsifiable.

The results were simply what you might expect of anyone with a fluctuating chronic illness.

I was wondering that: how was the behaviour in contrast to the hypothesis but still "in line" with the model? Could it be that the model is just tap dancing bollocks?

 

[trishrhymes]

It saddens me so much that a PhD student in psychology is being made to write such drivel, and forced to believe without question a nonsensical and dangerous theory about CFS.. I can imagine the scene. Young, enthusiastic student is given the project:

'You are going to spend the next 3 or 4 years of your life reading only the psychology papers that support our 'false illness beliefs and deconditioning' model. You will not be exposed to any science that might pollute your mind with actual evidence that CFS is a physical illness.

You will then design a study using intrusive demands for responses beeped at patients lots of times every day for 10 days asking them damn fool questions with choices of answers loaded to prove what we want you to prove. You are not going to measure anything objective like actometer readings, heart rates, cytokine levels etc just in case it gives us the wrong answers.

You will then feed the data into a statistics package you barely understand and interpret the answers only in the light of the accepted model.

You will find a way to say that the results, the blindingly obvious results that patients do more when symptoms allow and rest when they feel too ill to move, to mean that patient behaviour perpetuates false illness beliefs and therefore supports our model of CFS.

You will go further in saying that this is evidence that such beliefs need to be changed by brainwashing, er sorry, I mean CBT, so they learn to ignore their bodies and instead follow our proven method of pushing through regardless of pain and exhaustion.

And they call this science and yet another poor dupe is brainwashed into believing she has proved something real and awarding her a PhD for doing so.

I despair.

 

[daisybell]

FFS.....
What utter drivel.
How can people get funding to do this stuff, and how can journal editors be so stupid as to accept it for publication?

Either we feel well enough to do tasks to completion, or we don't.
Some days we do, and some days we don't.
When we don't feel very well, we're not very happy about it.
Magic!

That sounds like perfect adaptation to a fluctuating chronic illness to me.

 

[dancer]

Let's not insult tap dancers ;-)

(that was in response to the earlier post about the whole model being tap dancing) Hee hee!

 

[RogerBlack]

I note that the app used seems rather simple. It beeps at psuedorandom times 10 times throughout the day and asks a few questions.
I think it's fair to say the vast majority of us have suitable devices.

 

[Woolie]

I note that the app used seems rather simple. It beeps at psuedorandom times 10 times throughout the day and asks a few questions.
I think it's fair to say the vast majority of us have suitable devices.

Yea, I wouldn't be volunteering though. You get your first "beep" at 7.30am! (can't have those lazy dysfunctional CFS patients sleeping in, can we? That would perpetuate their symptoms).

No wonder the proportion responses submitted on time was not much more than half....

 

[RogerBlack]

Yea, I wouldn't be volunteering though. You get your first "beep" at 7.30am! (can't have those lazy dysfunctional CFS patients sleeping in, can we? That would perpetuate their symptoms).

No wonder the proportion responses submitted on time was not much more than half....

There is no especial reason why it couldn't realistically and without any bias only start when you wake up. It's not checking sleeping patterns after all.

 

[Jenny TipsforME]

How I interpreted these results was:

- limiting activity is the received wisdom of how to manage ME. This requires extreme resilience and discipline. When pwme are coping well emotionally we have the resilience to pace well.
- when we aren't coping quite so well with adverse circumstances and severe restrictions, we give into the temptation to do more than is sensible, even though we know we'll pay later
- when our symptoms are worse there is a greater need to pace well, and it is also an obvious reminder that this is what we need to do
- this is contrary to a CBT model which pushes increased activity. At a push it could evidence the need to support patients better (normal chronic illness CBT)

The ability to spin results is quite impressive. Who did the peer review I wonder?

 

[Dolphin]

Some definitions:

Patient activity management (cognitive–behavioral) strategies. Items assessing patient activity management strategies were modified for ESM from the Cognitive-Behavioral Response Questionnaire (Skerrett & Moss-Morris, 2006). Activity limitation was assessed by two items: “resting to control my symptoms” and “avoiding activities that might make my symptoms worse” (alpha = .80 for these items). Two further items were included to assess all-or-nothing behaviors. These items were “rushing to get things done while I feel able” and “doing things while I can” and loaded on to a single-factor solution (alpha = .87).

Therefore, to assess the extent to which they felt “well” in the moment, two items, “feeling well” and “feeling active,” were included (alpha = .74).

Feeling well should not be confused with positive affect i.e. positive mood which was also measured.

 

[Dolphin]

This shows where the authors are coming from. It also shows that their form of CBT isn't anything "cuddly"

Patients in our study had recently been enrolled into a course of either CBT or pragmatic rehabilitation. Over time, both of these treatments will help patients to understand that activity limitation and all-or-nothing behavior are not helpful responses to symptoms, and both will encourage a gradual, programmed increase in activity levels based on collaboratively agreed goals rather than driven by symptoms.

I think such an approach can be dangerous. Symptoms of physical illnesses are useful pointers to listen to. Totally ignoring them in a condition like ME/CFS is both risky and also not sensible in terms of maximising activity. It is much more likely to lead to "boom and bust" I would say.

 

[daisybell]

First do no harm...??