An Acceptance and Commitment Therapy (ACT) intervention for Chronic Fatigue Syndrome (CFS)

[Dolphin]

http://www.sciencedirect.com/science/article/pii/S2212144717300315

Journal of Contextual Behavioral Science
Available online 8 April 2017

In Press, Accepted Manuscript — Note to users



An Acceptance and Commitment Therapy (ACT) intervention for Chronic Fatigue Syndrome (CFS): A case series approach

• Lauren Rochea,
• David L Dawsona, , ,
• Nima G Moghaddama,
• Anne Abeyb

https://doi.org/10.1016/j.jcbs.2017.04.007


Highlights


•
Acceptance and Commitment Therapy can improve wellbeing in chronic health conditions

•
Chronic Fatigue Syndrome is a debilitating and challenging chronic syndrome

•
We examine guided ACT self-help in a case-series of individuals with CFS

•
ACT was linked with increased physical activity and valued behaviour

•
Across cases, evidence for effects on psychological flexibility was mixed



Abstract
Objective
Acceptance and Commitment Therapy (ACT) has been shown to improve the psychological well-being of individuals suffering from a range of chronic health conditions, and aims to increase psychological flexibility in order to foster greater engagement in personally meaningful behavior. We aimed to assess whether the approach (delivered via guided bibliotherapy) may have utility for individuals experiencing the debilitating effects of Chronic Fatigue Syndrome (CFS).

Methods
We used a mixed-methods multiple single-case design to explore the effects of a six week self-help ACT intervention for six participants diagnosed with CFS.

Results
Significant increases in ratings of valued living were replicated and maintained in four participants, with qualitative data further highlighting the importance of the values component of the intervention. Acceptance scores improved in four participants but were not maintained at follow-up, whereas improvements in psychological flexibility were observed and maintained for three participants. All participants wearing an activity monitor evinced increased physical activity postintervention, which was maintained at follow up in half of the participants.

Conclusion
The ACT self-help intervention appeared to benefit most participants on at least one assessed metric, particularly in terms of the promotion and pursuit of individual values, and increased physical activity. However, the results suggest these benefits may be difficult to maintain longer term without further input.

Keywords

• Acceptance and Commitment Therapy;
• Chronic Fatigue Syndrome;
• case series

 

[Dolphin]

This appears to be based on Lauren Roche's PhD thesis. A thread on this is here:

http://forums.phoenixrising.me/inde...or-chronic-fatigue-syndrome-phd-thesis.46722/

It includes a link to the full PhD text which can be read by anyone.

 

[trishrhymes]

I continue to be amazed that such tiny studies get published. Surely this is no more than a pre-pilot study if there is such a thing.

At least the author admits the results were mixed and generally not sustained.

I hate to be cynical, but it looks from the abstract like it could be little more than an exercise in teaching people how to fill in questionnaires to please the experimenter.

And, though I commend the use of actometers, with a fluctuating condition, one would expect on average half the group to walk a bit more, and half not to after the intervention...

With a long term condition, treating 6 people for 6 weeks is negligible. Certainly not the basis on which any reliable conclusions can be drawn.

But I admit I've only read the abstract.

Can you really get a PhD for so little 'work'?

Edit to add. I've just looked at the other thread on this, and realise I commented there too. I really must stop going on about stuff that annoys me! I thought it seemed familiar.

 

[Dolphin]

I really don't know much about Acceptance and Commitment therapy so I'm not the best person to give a detailed review of this paper but will post my observations for what they are worth.

 

[Dolphin]

Second paragraph is annoying:

In line with literature recognising various psycho-social determinants of health (Martikainen, Bartley, & Lahelmac, 2002), a range of psychosocial factors appear to contribute to the maintenance of CFS. Cognitive-Behavioral models of CFS suggest that unhelpful beliefs and thinking patterns, in response to initial symptom experiences, may lead to a reduction in activity, which in turn can exacerbate symptoms, creating a ‘vicious circle’ of impairment and distress. Similarly, previous research has suggested that individuals experiencing CFS often use avoidance-based coping strategies in an attempt to manage their condition, which can in turn lead to increased impairment and distress (Heins, Knoop, Burk, & Bleijenberg, 2013). Also, tendencies towards cognitive styles such as ‘maladaptive perfectionism’ have been associated with these patterns (Sirois & Molnar, 2014; Kempke et al., 2013).

 

[Dolphin]

I don't believe this paper mentions a single biological finding. This can lead to a skewed view of the illness as something solely caused by beliefs and behaviours.

 

[Dolphin]

Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET), focused specifically on increasing physical activity, are recommended evidenced-based interventions for CFS (National Institute of Clinical Excellence (NICE), 2007; White et al., 2011), with recent research reporting beneficial effects such as less fatigue and better physical function that can be maintained in the longer term (Sharpe et al., 2015). However, these findings have received significant criticism from the CFS community; CFS clients and advocates have raised concerns regarding the methodological underpinnings of this research, as well as concerns that understanding CFS within such models may serve to trivialise and invalidate the very real experiences associated with the condition (Shepherd, 2015; Tuller, 2015).

It is better than nothing that they mentioned concerns. But it is frustrating how they cite long-term study which actually found no long-term benefit for CBT and GET: the control group had similar results.

 

[Dolphin]

ACT aims to reduce experiential avoidance (in the service of increasing values-consistent behavior) by fostering greater psychological flexibility – “the ability to contact the present moment more fully as a conscious human being, and to change or persist in behavior when doing so serves valued ends” (Hayes, Luoma, Bond, Masuda & Lillis, 2006, p.7).

As I say I don't know too much about this. But persisting when you have symptoms with ME rather than resting or switching to another activity is not necessarily a good strategy.

 

[Dolphin]

Many of the challenges associated with living with CFS could be understood within an ACT framework – for example, strategies to avoid fatigue, both behaviorally and cognitively, serve to increase distress, particularly when they compromise valued action.

This seems to suggest that stopping activities to rest or switch activities can cause distress and that this is bad so that if you can encourage people to keep going that reduces distress and hence that is better. This puts distress as the most important outcome rather than controlling whatever is happening biologically that might cause a patient to stop doing what they're doing/what is causing fatigue.

 

[Dolphin]

The functional goal of an ACT intervention with CFS would be movement in the processes of the model, so an increase in flexible ways of relating to fatigue, and ability to change behavior when it is not allowing the achievement of desired goals in a specific context. Balancing acceptance processes with behavioral commitment, clients would be encouraged to reduce experiential avoidance of distressing thoughts and evaluations about self and fatigue as well as feared bodily sensations, and to find ways to move towards valued life directions even when unpleasant fatigue thoughts and symptoms are present.

Again this seems to be suggesting that patients persist in activities and ignore symptoms.
This is not necessarily a good strategy in CFS.

Also the earlier part of this suggests that people may be able to push through to achieve goals and that this is good when the goals could be unrealistic.

 

[Dolphin]

Chronic illness models place emphasis on the need for self-management, to maximise self-efficacy and control and to minimise dependency on health services (Bodenheimer, Lorig, Holman, & Grumbach, 2002; Nodhturft et al., 2000).

So is the idea to save money? And is it done by making the patient feel they don't need health services that they are completely in control of the illness and its outcomes, which may not be true.

 

[Dolphin]

Behavior change is also more likely and more sustainable if it is personally meaningful and freely chosen; ‘activating’ the patient in their own treatment as part of a patient centred approach is consistently associated with improved physical health outcomes (Anderson, Funnel, & Arnold, 2002).

Involving the patient may be good but the use of the term "treatment" suggests perhaps the condition can be treated, as opposed to being managed, by nonpharmacological means.

 

[Dolphin]

The Mindfulness Attention and Awareness Scale (MAAS: Brown & Ryan, 2003).

The MAAS is a 15-item self-report inventory designed to measure attention to and awareness of what is occurring in the present moment. Items (e.g., ‘I found myself doing things without paying attention’) are rated on a six point Likert scale (1 = almost always and 6 = almost never), and the mean of these items is calculated to give a score from 1-6, with higher scores indicating greater mindfulness. The MAAS has been found to have good internal consistency, with Cronbach’s alphas of .82 and .87 in clinical and non-clinical samples; clinical samples have been found to obtain lower scores (Brown & Ryan, 2003). This scale is considered to be reliable and valid within a physical health sample of cancer patients (Carlson & Brown, 2005). Preliminary analyses supported reliability and validity of the MAAS for patients with chronic pain (McCracken & Thompson, 2009).

Mindfulness-Mindful Attention Awareness Scale (MAAS)

http://www.ircimh.org/local/uploads/content/files/ALL COMPLETE PROMIS 10 PROMIS 29 MINDFULNESS CHOICES.docx

Please indicate the degree to which you agree with each of the following items using the scale below.

Almost
always

Very
frequently

Somewhat frequently

Somewhat infrequently

Very
infrequently

Almost
never

MAAS1

I could be experiencing some emotion and not be conscious of it until some time later.

MAAS2

I break or spill things because of carelessness, not paying attention, or thinking of something else.


MAAS3

I find it difficult to stay focused on what’s happening in the present.


MAAS4

I tend to walk quickly to get where I’m going without paying attention to what I experience along the way.


MAAS5

I tend not to notice feelings of physical tension or discomfort until they really grab my attention.


MAAS6

I forget a person’s name almost as soon as I’ve been told it for the first time.


MAAS7

It seems I am “running on automatic” without much awareness of what I’m doing.

MAAS8

 I rush through activities without being really attentive to them.

MAAS9

I get so focused on the goal I want to achieve that I lose touch with what I am doing right now to get there.

MAAS10

I do jobs or tasks automatically, without being aware of what I’m doing.

MAAS11

I find myself listening to someone with one ear, doing something else at the same time.

MAAS12

I drive places on “automatic pilot” and then wonder why I went there.

MAAS13

I find myself preoccupied with the future or the past.

MAAS14

I find myself doing things without paying attention.


MAAS15

I snack without being aware that I’m eating.



Scoring MAAS: To score the scale, simply compute a mean of the 15 items. Higher scores reflect higher levels of dispositional mindfulness.



Mindfulness measure

My total

My item average

MAAS





Comments on MAAS:















Brown, K. W., & Ryan, R. M. (2003). The benefits of being present: mindfulness and its role in psychological well-being. Journal of personality and social psychology, 84(4), 822.

 

[Dolphin]

ACT process measures.

The Philadelphia Mindfulness Scale (PHLMS; (Cardaciotto, Herbert, Foreman, Moitra & Farrow, 2008)

This questionnaire is designed to measure two ACT processes: acceptance and present moment awareness (mindfulness). We included another measure of mindfulness (the MAAS: see below) and so the PHLMS was largely used to monitor acceptance. Participants rate 20 items addressing experience with thoughts and emotions (e.g., ‘There are aspects of myself I don’t want to think about’) on a five point Likert scale (1 = never and 5 = very often). Odd items are summed for the awareness score, and even items are reversed and summed for the acceptance score. Scores can range from 10 to 50 on each scale: higher scores indicate higher levels of the components being measured. The two subscales were not correlated in previous studies, suggesting that they can be examined independently; Cronbach’s alpha was found to be .85 and .81 respectively, suggesting good internal consistency for both and the scale has also been shown to be able to distinguish between clinical and non-clinical samples of psychiatric outpatients and patients with eating disorders (Cardaciotto et al., 2008).

http://www.ircimh.org/local/uploads/content/files/ALL COMPLETE PROMIS 10 PROMIS 29 MINDFULNESS CHOICES.docx

Mindfulness- Philadelphia Mindfulness Scale (PHLMS)

Please select how often you experienced each of the following statements within the past week.

Never

Rarely

Sometimes

Often

Very Often

PHLMS1

I am aware of what thoughts are passing through my mind. (Aw)


PHLMS2

I try to distract myself when I feel unpleasant emotions. (Ac)

PHLMS3

When talking with other people, I am aware of their facial and body expressions. (Aw)


PHLMS4

There are aspects of myself I don’t want to think about. (Ac)


PHLMS5

When I shower, I am aware of how the water is running over my body. (Aw)

PHLMS6

I try to stay busy to keep thoughts or feelings from coming to mind. (Ac)

PHLMS7

When I am startled, I notice what is going on inside my body. (Aw)

PHLMS8

I wish I could control my emotions more easily. (Ac)

PHLMS9

When I walk outside, I am aware of smells or how the air feels against my face. (Aw)

PHLMS10

I tell myself that I shouldn’t have certain thoughts. (Ac)

PHLMS11

When someone asks how I am feeling, I can identify my emotions easily. (Aw)
PHLMS12

There are things I try not to think about. (Ac)


PHLMS13

I am aware of thoughts I’m having when my mood changes. (Aw)

PHLMS14

I tell myself that I shouldn’t feel sad. (Ac)

PHLMS15

I notice changes inside my body, like my heart beating faster or my muscles getting tense. (Aw)

PHLMS16

If there is something I don’t want to think about, I’ll try many things to get it out of my mind. (Ac)

PHLMS17

Whenever my emotions change, I am conscious of them immediately. (Aw)

PHLMS18

I try to put my problems out of mind. (Ac)

PHLMS19

When talking with other people, I am aware of the emotions I am experiencing. (Aw)

PHLMS20

When I have a bad memory, I try to distract myself to make it go away. (Ac)





Scoring the PHMS:

Awareness Subscale: items 1, 3, 5,7,9,11,13,15,17,19

Acceptance Subscale: items 2,4,6,8,10,12,14,16,18,20




My total

My item average

PHMS -TOTAL



Awareness



Acceptance




Comments on PHMS:

 

[Sean]

The functional goal of an ACT intervention with CFS would be movement in the processes of the model, so an increase in flexible ways of relating to fatigue, and ability to change behavior when it is not allowing the achievement of desired goals in a specific context.

Patients are ignorant/delusional/stupid/etc, and need an expert to teach us how to manage something the expert clearly has no fucking clue about.

Balancing acceptance processes with behavioral commitment, clients would be encouraged to reduce experiential avoidance of distressing thoughts and evaluations about self and fatigue as well as feared bodily sensations, and to find ways to move towards valued life directions even when unpleasant fatigue thoughts and symptoms are present.

How is this any different from CBT/GET? Same old shit in another cheap rhetorical suit.

Plus just six participants. How the hell do you get any statistical robustness with n=6?

 

[Dolphin]

The Cognitive Fusion Questionnaire (CFQ; Gillanders et al., 2014).

This is a seven item self-report questionnaire assessing cognitive fusion. Items (e.g., ‘I got so caught up in my thoughts that I was unable to do the things that I most wanted to do’) are rated on a seven point Likert scale (1 = never true and 7 = always true), with higher scores indicating higher cognitive fusion. Elevated levels of fusion have been reliably identified amongst clinical samples in contrast to nonclinical samples, and the scale has demonstrated good internal consistency and test-retest reliability (alphas >.80; Gillanders et al., 2014); this scale has been considered valid and reliable in a chronic pain sample (see McCracken, DaSilva, Skillicorn, & Doherty, 2014).

https://research.gold.ac.uk/8877/1/CFQ-Gillanders et al 2014.pdf

CFQ
Below you will find a list of statements.

Please rate how true each statement is for you by circling a number next to it.
Use the scale below to make your choice.
1 2 3 4 5 6 7
never true very seldom true seldom true sometimes true frequently true almost always true always true

1. My thoughts cause me distress or emotional pain 1 2 3 4 5 6 7

2. I get so caught up in my thoughts that I am unable to do the things that I most want to do 1 2 3 4 5 6 7

3. I over-analyse situations to the point where it’s unhelpful to me 1 2 3 4 5 6 7

4. I struggle with my thoughts 1 2 3 4 5 6 7

5. I get upset with myself for having certain thoughts 1 2 3 4 5 6 7

6. I tend to get very entangled in my thoughts 1 2 3 4 5 6 7

7. It’s such a struggle to let go of upsetting thoughts even when I know that letting go would be helpful 1 2 3 4 5 6 7

Thank you for completing this questionnaire

 

[Dolphin]

The Engaged Living Scale (ELS; Trompetter et al., 2013).

Designed to assess an engaged response style, this questionnaire relates to the values and committed action aspect of the ACT model. Participants are asked to rate 16 statements (e.g., ‘I have values that give my life meaning’) on a five point Likert scale from 1 = not at all to 5 = totally agree. Total scores range between 16 and 80, with higher scores indicating a more engaged response style. The scale has been demonstrated in a normative sample to have good internal consistency with Cronbach’s alpha .9, and it was thought to have incremental validity in explaining relationships between ACT theory and behavioural outcomes in a chronic pain sample (Trompetter et al., 2013).

http://essay.utwente.nl/68632/1/Knirsch, P. - s 10979549 (verslag).pdf

1 I have values that give my life more meaning.
2 I know what motivates me in life.
3 I believe that I’ve found important values to live according to.
4 I know exactly what I want to do with my life.
5 I make choices based on my values, even if it is stressful.
6 I know how I want to live my life.
7 I know what I want to do with my life.
8 I believe that my values are really reflected in my behaviour.
9 I believe that how I behave fits in with my personal wants and desires.
10 My emotions don’t hold me back from doing what’s important to me.
11 I live the way I always intended to live.
12 I am satisfied with how I live my life.
13 Nothing can stop me from doing something that’s important to me.
14 I believe that I am living life to the full right now.
15 I make time for the things that I consider important.
16 I feel that I am living a full life.

 

[NelliePledge]

Cognitive fusion :thumbdown:. Is this a Vulcan mind meld technique to make us think in the approved way.

 

[RogerBlack]

With a long term condition, treating 6 people for 6 weeks is negligible. Certainly not the basis on which any reliable conclusions can be drawn.

I am pondering submitting for publication a case series of one person, studied in depth for 36 weeks on the correlation between the bristol stool scale and fatigue levels.

I expect it to be similarly valuable to the field.

 

[Woolie]

ACT differs form CBT in that its less "corrective". Rather than identifying and trying to change the person's 'negative thought patterns', the aim is to help people come to terms with the way they feel and with their situation.

Its generally supportive, and used in a non-judgmental way. In the past, when I have seen it used in health, its does not make the assumption that the person's thoughts and feelings are the cause of the illness.

Not true here, though, I have to admit.