Picariello, Chalder et al: "It feels sometimes like my house has burnt down,[...]"

[A.B.]

The referral to a CBT service for CFS is an elaborate ritual that mimics the process of getting real treatment.

 

[Dolphin]

Challenges of CBT.

Even though most participants felt positive about the structure and content of CBT, some reported conflicting feelings about the CBT tasks. For example, participants found self-monitoring tasks useful, but at the same time found some tasks ‘incredibly tedious’ (pt12), or found difficulties with the logistics of integrating CBT into their everyday schedule: ‘sometimes it was hard to fit [activity monitoring sheets and sleep diaries] into your routine, because they would maybe require quite a lot of time that, if you are working full-time, and you are very tired, doesn’t always leave a lot of time for that kind of thing’ (pt11).
Nevertheless, participants generally did not report any significant practical barriers to session attendance, and were able to fit them around daily routines and responsibilities:

Here I’m very lucky because it’s one bus so really it’s not difficult for me at all (pt1),

It is good that it is mentioned that the ongoing work involved in the CBT costs in terms of time and energy.

Though the piece doesn't get across the time and energy involved in actually attending appointments. There is probably a bias and who took part: these are people who are nearly finished therapy or have completed therapy. A lot of people could have dropped out.

 

[Dolphin]

Gaining self-management strategies. Alongside gaining awareness, what seemed pivotal was learning to plan and manage activity according to one’s energy levels and wellbeing. This allowed participants to sustain improvements following CBT:

I think over time that consistently what’s been missing that’s helped. . . I’ve been armed with tools to be able to handle it myself. . .preparing before the week hits, so I know where the points in the week are where it might be stressful and how to prepare for that (pt9).

However the stated rationale for this form of CBT is to break the links between symptoms and how much you do. You are expected to do a consistent amount and gradually increase, not go up and down based on how you feel.

Gaining self-compassion. Participants also mentioned that through CBT they found it easier to be compassionate to themselves. They allowed themselves to take breaks, thereby avoiding a ‘boom and bust’ pattern of behaviour:

Planning your days so that YOU can manage it, rather than depending on someone else to plan your day, and to help you through because you need to be able to help yourself. . .and now I feel I know my limits better, and I know where I need to stop and rest (pt14).

When you take breaks in CBT is supposed to be based on the schedule/timetable, not symptoms.

I do think CBT may encourage people to take more breaks which may help people a bit. But this (extra breaks) isn't the reason the proponents say it helps.

 

[Dolphin]

Losing favoured activities. For some participants, an unwanted consequence of developing a more consistent behavioural routine meant discontinuation of much-loved hobbies and activities. However, participants gained a sense of perspective and were able to see the costs and benefits of this approach:

I found that very hard, and to not be active was very hard, because I’ve always been a very active sort of person. . . it kind of feels sometimes like my house has burnt down, but I can see the sky. . .I feel like I’ve lost a lot, but I’m still here (pt12).

Here is to quote from the title.

It is true for most people with the illness that giving up activities is hard and not something people want to do.

 

[Dolphin]

They [activity monitoring] were useful. . .because you think that you just do nothing all day or you do too much and actually writing it down and looking back at why I was tired because I did that for 4 hours was quite useful (pt4).

Shows that keeping an activity diary could be useful. However this is not specific to CBT.

 

[Dolphin]

Feedback on the cognitive aspects of therapy was more mixed, with some perceiving it as crucial:

The biggest part of the therapy was the cognitive, the challenging beliefs (pt6).

Others felt that cognitive aspects of treatment were less useful, especially for the physical symptoms of CFS:

tackling negative thinking. . .I don’t know how much it’s helped with pain or fatigue, just little changes but not really big (pt3).

 

[Dolphin]

Before and now.

Descriptions of improvement following CBT all shared prominent characteristics. Participants who felt that they benefited from CBT often reported changes in well-being, for example:

I went from not really walking very much to walking for 11 miles last weekend (pt11).

I don't think this is a typical response to CBT, though the reader is not told that.
Though taking about it, 5.5 miles is 8851 metres.
Probably around 10,000 steps. Healthy people can very often walk a lot more than that.

 

[Dolphin]

Nonetheless, participants often felt that CBT provided the skills necessary to overcome such setbacks (see Theme 5):

the Sunday I had what I felt was a real CFS symptom day, it felt exactly like I felt right back in the beginning. . .So I thought “no stop it, I am not going to go nuts,” and I thought “alright I’ll laze in bed, I’ll read,” I think I got up for a couple of hours, but I felt tired so I went back to bed, got a few hours of sleep, woke up, felt a lot better (pt10).

This isn't really what one is encouraged to do in CBT for CFS.

 

[Dolphin]

Before commencing treatment, participants had varied expectations of CBT. Some expressed uncertainty, whereas others saw it as a last resort and hoped for improvement. Perception of treatment as a last resort has also emerged in another qualitative study of psychological therapies across medically unexplained symptoms (MUS), including CFS, fibromyalgia, and chronic pain (Gerskowitch, Norman, & Rimes, 2015). A minority of participants expected CBT to cure their CFS, and for some high expectations seemed to lead to disappointment and a lower perception of improvement following treatment. Previous research has also shown that patient expectations can impact upon treatment outcomes (Heins, Knoop et al., 2013; Heins, Knoop, Burk et al., 2013). Setting sights too high can result in disappointment, whereas being too pessimistic can result in poorer engagement with therapy (Bentall et al., 2002; Knoop, 2011; Prins et al., 2006; Westra, Aviram, Barnes, & Angus, 2010; Westra, Dozois, & Marcus, 2007). Positive outcome expectations may increase patients’ perception of control, facilitating reductions in posttreatment fatigue (Heins, Knoop et al., 2013; Heins, Knoop, Burk et al., 2013). Therefore, outcome expectations need to be addressed and maximized at the start of treatment (Greenberg, Constantino, & Bruce, 2006).

I don't like the sound of that.

 

[Dolphin]

Moreover, studies have previously found that the benefits from CBT for CFS can be maintained long-term after treatment (Deale, Husain, Chalder, & Wessely, 2001; Flo & Chalder, 2014; White, Goldsmith, Johnson, Chalder, & Sharpe, 2013; White et al., 2011).

The last 2 references referred to the PACE trial. I'm not sure why they don't use the long-term follow-up paper as the reference. It reported that the no individualised therapy group caught up with the CBT group by long-term follow-up, not the impression given by this statement.

This paper

Flo, E., & Chalder, T. (2014). Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice. Behaviour Research and Therapy, 63, 1–8. doi:10.1016/j.brat.2014.08.013

only looked at one time point, 6 months after treatment ended. I'm not sure that qualifies as long-term follow-up. Also with only data from one time point, it's not clear that one should talk about maintaining benefit. There was also no control group.

 

[Dolphin]

Clinical Implications

Overall, there was a consistent satisfaction with the services provided at the CFS unit. Even participants who did not report improvements described treatment as relevant and the therapist contact as supportive.

The findings also highlight that sensitivity is paramount, especially when approaching the subject of beliefs patients may hold in relation to CFS.

A solely psychological explanation of CFS may be alienating to some patients as it implies that they are responsible for their illness, and could be seen to implicitly blame them.
[The CBT model does imply this]

Patients may come into CBT treatment having experienced delegitimation and stigma (Dickson, Knussen, & Flowers, 2007) which may shape their engagement with and experience of CBT (Banks & Prior, 2001).

Providing patients with validation and recognition is critical, as it can facilitate the acceptance of psychological and social factors, alongside physiological ones
[Sounds like a way to trick the patients] (Chew-Graham, Brooks, Wearden, Dowrick, & Peters, 2010; Salmon, Dowrick, Ring, & Humphris, 2004).

The CBT model acknowledges the role of both biological and psychosocial factors in the initiation and perpetuation of CFS
[What biological factors perpetuate the condition apart from deconditioning and other behaviours in the CBT model?],
and this needs to be stressed in treatment.

 

[Dolphin]

Limitations of the current study and future directions

A limitation of this study is that it included only patients who were approaching the end of CBT or who had already completed CBT. Different themes may have emerged with patients who withdrew early from treatment; therefore, it would be valuable for future research to explore their experiences. To obtain accurate perceptions of patients and avoid recall bias, interviews could be conducted at different stages throughout the treatment process, as has been suggested by Dennison et al. (2010). The results may have been influenced by the overall response rate of 41%. However, other studies found comparable response rates in this patient population (Dennison et al., 2010; Moss-Morris, Petrie, & Weinman, 1996). Future studies could combine qualitative and quantitative methods, which would allow for triangulation.

As I mentioned above, it would have been good if this study was completely independent from the staff. Trudie Chalder runs this unit.

 

[Dolphin]

Conflict of interest

T Chalder is the author of the following books: Chalder T. (1995) Coping with Chronic Fatigue. Sheldon Press, London; Chalder T & Hussain K. (2002) Self help for Chronic Fatigue Syndrome. A guide for young people. Blue Stallion Publication, Oxon; Burgess M & Chalder T. (2005) Overcoming Chronic Fatigue. Constable & Robinson, London. K. Rimes and S. Brooks have no conflict of interest with respect to this publication.

The 2 underlined people who were not authors!

 

[Dolphin]

Presumably a typo I should be "isn't":

Many participants reported that their acceptance of psychological explanations was crucial in the process of engagement (see also subtheme 2.2), as clearly evident in this comment:

I think some people see it as sort “oh it means that it’s all sort of in your head, and it’s a purely psychological issue,” when it may or may not be the case, but it can still help people with chronic health conditions. So I think if you don’t buy into that, then it probably is going to be very helpful (pt11).

 

[Dolphin]

Comments on whether or not the participants were receptive and openminded to the psychological model of CFS and the treatment model that was being presented to them:

‘Here I am, and I will participate freely and openly because, frankly, what choice do I have. And that was the way I felt at the time’ (pt12)

I think the underlined bit may show how vulnerable people can be. They can be at the end of the tether and feel they have to try everything. This could lead them to try therapies that are potentially harmful to their physical and/or mental health.

 

[Dolphin]

‘doing the sleep diary. . .“okay I am oversleeping massively, I should be doing something to tackle that problem”’ (pt6)

I know this is something that the CBT approach aims to tackle. I remain to be convinced that oversleeping is usually something that should be tackled. I think your body probably gets you to sleep as much as you need. An exception might be to nap in the hours before bedtime.

I think with some psychiatric illnesses like depression people may oversleep but I don't think similar advice should necessarily apply to ME/CFS.

 

[Dolphin]

‘After my first appointment and just sitting there talking to someone for an hour I was exhausted but I’m back at work now’ (pt4)

CBT didn't improve employment measures in the PACE trial. Readers aren't told this.

There is quite a good chance this person could have improved without CBT. During CBT can cause people to attributed improvements to CBT that could have happened otherwise.

 

[BruceInOz]

The data were analysed using inductive thematic analysis.

I note Wikipedia (https://en.wikipedia.org/wiki/Thematic_analysis) has the following to say about methodological problems with thematic analysis:

Given that qualitative work is inherently interpretive research, the biases, values, and judgments of the researchers need to be explicitly acknowledged so they are taken into account in data presentation.

As I read the snippets Dolphin has extracted for us (thanks @Dolphin!) I am left wondering how much thought the authors of this have given to trying to eliminate their biases. To me it seems that the choice of which patient quotes to present and what interpretation to give them all seem so vulnerable to researcher bias that I am left wondering what the benefit is. To be of benefit to me, I would want to see all patient responses and form my own interpretation. But of course, it may be just me: my background is in the hard sciences and I know nothing about this kind of "research".

 

[Effi]

CBT as support. For many participants, CBT provided a source of support and a space for them to speak openly without being judged.
They suggested that CBT allowed them to express themselves and work through difficulties in a non-judgemental, supportive setting.

In all seriousness... one of the main aims of the BPS school of thought is to offer governments a CHEAP way of treating patients of poorly understood illnesses. The above quote talks about a safe space where you can talk about your illness in a supportive setting. This is exactly what online patient forums offer. And they cost the government nothing. They are even safer than CBT, because patients don't have to travel anywhere, sit up on a chair for an hour, etc. Also, from many patient reports we know that a lot of these therapists are actually not sympathetic towards patients at all, which causes a lot of emotional harm.

A therapy that can be more than completely replaced by a non-professional, and free online service, is probably not a very good kind of therapy.

 

[Molly98]

I would like to see a trial comparing person centred counselling to CBT for ME CFS, my guess is that positives reported from CBT are not to do with CBT but are to do with being listened to ( this is a biggy when you feel you have been dismissed by most other medical professionals) the non-judgemental, safe environment and the therapeutic relationship and feeling supported. These are the fundamentals of pretty much all therapies and have a lot to do with the personal qualities and therapeutic skills of the therapist NOT the mode of therapy - CBT.

My guess is also that when these therapeutic fundamentals are missing eg. you get a therapist who is judgemental, critical, pushy and the patient does not feel listened to or supported you are going to get negative experiences of CBT reported.

But these positive and negative experiences of the therapeutic relationship need to be separated out from objective measures of physical improvement.

If you have formed a good working relationship with the therapist and like them personally, you are going to struggle to admit it has not helped.

@Effi , I agree with what you say about patient forums too.

What would be interesting would be to see a trial that compared CBT, non-directive person centred counselling, peer mentoring and patient forum support.

I really don't think a positive experience of something should be attributed to improvement. They are very different things.

I have a positive experience of patient forums such as PR for example. Apart from providing me with information, it gives me the experience of being heard, feeling supported, feeling understood, feeling that I am not isolated and alone, feeling part of a community, all of this makes my ME more bearable, it helps me to manage, it helps me feel less overwhelmed, but doesn't cure me and it has not improved my condition physically. But if someone asked has it helped, yes it has helped enormously, it helps me to cope.

Are patients positive reports of CBT a similar experience to this, quite possibly.

My guess is that many of the patients selected for these trials are those who are fairly new to ME / CFS, they may not realise that improvements can happen entirely spontaneously in this disease, but so to can relapses, those who did improve while undergoing CBT may have improved anyway, I think this is very likely to be the case.

They may also consider themselves cured or better and having their life back if they have not yet had the experience of relapse. This would be a natural presumption as it is after all the usual occurrences with most illnesses, particularly that begun with viral infection- you get sick, then you get better and resume your life, end of story.

Personally, I have been lucky enough to 'get better' enough on a couple of occasions to work and resume a social life, although I have been unable to sustain this for any length of time, but when this does happen the last thing you want to do is to look back, you want to believe you are better and ME is a horrible nightmare chapter now in the past. And what do you know, I 'got better' without CBT, not one crumb of it.

And then I relapsed of course.