Cognitive behavioural therapy for MS-related fatigue explained: A longitudinal mediation analysis, 2018, van den Akker et al

From the abstract: http://journals.lww.com/menopausejo...itive_behavior_therapy_for_working.97632.aspx

Outcomes used:

Results:

Looks like they might have managed to achieve a consistent split between their subjective self-report outcomes and their more objective outcomes. I don't know how "work impairment due to presenteeism" was measured though.

Edit: looks like all outcomes are just self-report questionnaires, apart from healthcare usage, results for which were not mentioned in the abstract:
https://clinicaltrials.gov/ct2/show/NCT02623374

Also, I thought that the Guardian article was interesting for how it emphasised that evidence the menopause had a negative impact on professional performance was not "good", and was only subjective:

But made no mention of the problem of subjective self-report outcomes being unable to provide good evidence for an interventions efficacy in nonblinded trials:

 

Thanks for taking a closer look, @Esther12
I must admit to having just skimmed the article myself

 

I didn't get around to opening their paper.

Maybe we should have some template letter for nonblinded trials and subjective self-report outcomes? We could send off ten a week for publication in journals and it might do some real good.

 

!!!!!!

 

I wonder why the CBTs are thinking so catastrophically about menopause's effect on the workplace. Lots of overly negative thoughts there. Perhaps they've been ruminating about how awful things could get in the worst case scenario. Fortunately, you have CBT to help you deal with those!

 

That isn't true. Sure, the PACE trial focused on more of a denial type of CBT, and many others have too, but if you look at the full text of some other studies of CBT in CFS (in the methodology section), the kind they use is can be more of the coping and managing kind. (There's also a few that are a bit vague about the kind of CBT they use) For example, this study: https://www.ncbi.nlm.nih.gov/pubmed/27620986 seems to use more the managing kind (based on the diagram), this one: http://journals.sagepub.com/doi/abs/10.1177/1359105317707259, which just focused on depressive symptoms, used a coping kind, and this meta-analysis: www.sciencedirect.com/science/article/pii/S0272735815000896 talks about how three kinds of CBT have been used, one that focuses more on preventing the boom-bust cycle, and another that focuses on increasing activity, and another that focuses on managing daily activities and psychological well being. (you need to look at the full texts of the studies though)

So, the truth is a bit more complicated than that.

 

Actually, the study itself (link here) provides some contradictory information about their approach, and I would recommend extreme caution in interpreting it.

Pacing was actually used as a precursor to GET, which was the primary intervention hypothesised to have treatment benefits. The pacing module was merely there to establish a baseline from which to start GET.

On the topic of CBT, the paper says:

Ref 19 is known well to many of us here, and it prescribes a programme where patients are encouraged to reframe their symptoms not as signs of illness, but as the normal consequences of some combination anxiety, deconditioning and sleep deprivation. The rest of the text leaves little doubt that this is indeed the approach they take, with its emphasis on prohibiting daytime naps, etc.

Your second reference, the one on coping, is indeed much more about coping. But you need to remember that "coping" in this context assumes that the patient's suffering is being exacerbated by their negative and inappropriate thoughts and beliefs: they are catastrophising about the pain (evaluating it as much more severe and all-encompassing than it really is) and appraising their lives in an inappropriately negative way. It is not theory-neutral. The therapist is required to make judgements as to which of the patient's thoughts and beliefs are "maladpative" and which should be considered normal.

Its a great idea to seek out a mental health professional to work with to help you cope. A good life coach or counsellor who's used to working with the disabled and chronically ill would be perfect. You just need to be aware that if you choose CBT specifically, you need to pick a therapist that has some inside knowledge of CFS, and that their judgements about which of your thoughts are "inappropriate" are not based on an incorrect model of the illness.

Even then, CBT in this context is largely about correcting thoughts, beliefs and attitudes, so you should also be aware of this from the get-go.

 

That's only one part of what the paper says their CBT involves, the other parts including "sleep-wake cycle disturbance management which sought to optimise sleep hygiene, notably to minimise daytime napping and to ensure an unbroken, regimented night-time sleep routine; and neurocognitive disturbance management, essentially a cognitive remediation approach analogous to GET. In addition, three optional modules of problem-focused CBT were applied to patients with significant clinician-designated: depression; anxiety; or poor coping."

Also, pacing wasn't used as a baseline in that study, it was used in conjunction with GET. "The first comprised of compulsory modules Accepted Article focused on activity pacing and GET delivered by an exercise physiologist. The activity pacing component was based on the ‘envelope’ theory of CFS 15 which suggests the disorder is associated with a limited energy supply, with exacerbations of fatigue triggered by ‘excessive’ activity resulting in prolonged inactive periods. The activity pacing intervention encouraged patients to avoid exacerbations by planning daily and weekly schedules of activities and rest breaks, and segmenting tasks into short time blocks." They say that it was used as a precursor to GET, but that wasn't to establish a baseline, that just meant they taught pacing first. Baseline in that study referred to prior starting any module, including pacing. If you look at the diagram showing the timeline of the study, you can see they do the baseline questionnaires prior to starting pacing.

In addition, the meta-analysis still talks about the different types of CBT that have been used in different studies, including ones focused on managing daily activities, psychological wellbeing, and preventing boom and bust. You've also got to remember, that just because they talk about things like negative and inappropriate thoughts and belief, that isn't unique to CFS, and doesn't necessarily imply at all that that they are using any kind of denial based CBT. (Inappropriate thoughts and beliefs is something you find in any kind of CBT, including in all its applications to physical illnesses.)

Michael VanElzakker, a postdoc at Harvard, and the founder of the vagus nerve infection hypothesis about CFS, said this about CBT:

"I understand that this is a really charged topic among CFS advocates, and there is a lot of misinformation out there. Just to be clear, cognitive-behavioral therapy (CBT) does not get at the root cause of CFS. CBT offers coping strategies and is not a cure. But I can’t think of a single medical condition that isn’t exacerbated by stress. CFS is no different. Having a chronic illness is stressful and it makes one’s life complicated and there’s a grieving process. CBT is for those parts of the illness. It’s intended to help people solve problems and to challenge dysfunctional patterns. If you’re seeing a CBT practitioner who views CFS as a psychologically-based illness and is approaching your CBT that way, fire them. Find someone else." (http://me-pedia.org/wiki/Michael_VanElzakker)

 

Now, look at the text you've just quoted. What is it saying? That in addition to the CBT I described above, they also encouraged people to improve their sleep hygiene by prohibiting daytime naps, etc. What do you think about that? What assumptions is that approach based on and do you agree with it? They did GET for cognitive as well as mental activity, and they offered additional modules for the very sad and anxious. But that is neither here nor there. Is there anything in there that indicates their overall approach is different from what I just said?

You misunderstand, I am not using baseline in the sense of "pre-intervention measures". I am using baseline in the sense of a baseline of tolerable activity.

I hope what I said above will encourage you not to believe what the metanalysis says these studies do, and to go straight to the source.

I agree with Dr. VanElzakker. Although he's a biologist, he is right on the money here. Again, I encourage you to look carefully at each CBT programme and consider for yourself what sorts of assumptions it makes about the causal role of psychological and behavioural factors.

 

I don't see what's wrong with improving sleep hygiene. I'm pretty sure everyone agrees that's a good thing. And I don't see why on earth that meta-analysis would lie. There is no reasonable methodological reason or motivation the meta-analysis would have for pointing out those different approaches for CBT have been taken in different studies if it weren't actually true.

And they make very clear in the study that they use pacing because they actually think it works, and it's part of the intervention. I think you're looking at pretty standard applications of CBT - how it's applied in all physical conditions - and assuming from these standard applications, which includes changing maladaptive thoughts and beliefs, that must mean the people using it don't think CFS is a physical condition, like Dr. VanElzakker thinks so (for instance). I mean, that study also looks at post-cancer fatigue, and almost everyone thinks that's physical.

 

I don't want to butt into Woolie's explanation, but just thought I'd say:

No-one is saying sleep hygiene is an innately bad thing.

I've not looked into this specific point, but more broadly, I'm afraid that there are a lot of inaccuracies in meta-alayses. I think it's more often a result of sloppiness and error than lying. Although I wuldn't rule out a desire to mislead in some cases. As an example of problems from that most respected of bodies, Cochrane, here are a series of issues with their GET meta-analysis which they've failed to properly address: https://sites.google.com/site/mecfs...exercise-therapy-for-chronic-fatigue-syndrome

So far, what you've quoted supports Woolie's interpretation. People can use 'pacing'to mean different things, but as it's generally understood, it's just not compatible with GET. GET programmes will often talk about using some form of pacing to set a baseline of activity, but then it become a programme of graded activity. There's recently been attempts to re-define pacing as a form of GET, perhaps because there's an awareness amongst GET proponents that lots of patients speak positively of pacing and negatively of GET, but pacing (doing what feels right for you, without trying to increase your activity according to some programme) and GET (trying to increase your activity according to some programme, even if it doesn't necessarily feel right) aren't a natural mix.

 

Well, the statement that the meta-analysis makes about different types of CBT and the distinctions between them that have been used is such a bland and straightforward statement that it's incredibly unlikely it's wrong. It also wouldn't suit any psychosocial advocates for the meta-analysis to be saying that, because it totally undermines their belief that CBT, to them, is just about denial.

The study also clearly explains that the type of pacing it applies is about avoiding levels of activity beyond which lead to exacerbation, and that it explains it to the patient. That strongly implies they apply GET like I've been told many apply it - they slowly increase exercise, but only if they are able to do so without any exacerbation and if it feels okay, which means it isn't very contradictory.

 

Yea, wot @Esther12 said.

Pacing and GET are mutually exclusive approaches, based on entirely different illness models. Pacing involves discovering and working within your limits. GET involves stretching those limits. Any programme that encourages people to gradually increase their exercise is not pacing, and it doesn't become so just because you do it gradually.

Anyone who tries to tell you they incorporate "elements of both" is just bullshitting you.

 

Again, there has never been an objection to this kind of CBT or psychotherapy, for those who choose to use it.

Depends if the reasons for sleep problem are because of poor sleep hygiene (i.e. behavioural drivers), or other reasons that are not amenable to standard behavioural management techniques for poor sleep hygiene.

The definitions they use of poor sleep hygiene are highly problematic, and assumption laden.

For example, the no daytime naps rule. Arguably the most important definition of poor sleep hygiene is not sleeping when you need to. If that means taking naps during the day, so be it. Do you advise people in the depths of a flu to only sleep between 10pm-7am?

Plenty of ME patients have tried the no naps rule, and it doesn't work for them. In fact, one of the very few things that does work is the opportunity for patients to stop and rest, including nap or sleep, as required.

The no naps, do all your sleeping in one block prescription is entirely a cultural thing, not a monolithic innate hardwired requirement.

I was born and raised in the tropics, and I can tell you that naps are common in that sort of climate, even for the most healthy and active. Whole countries have naps, siestas, etc.

So why call it GET? How does that soft version differ from pacing?

The truth is that GET has slowly and quietly been morphed by its proponents into something more like pacing (i.e regulated by symptom response, instead of explicitly ignoring it), and those doing the morphing now claim it is the same as pacing.

The reason they still call it GET is because the 'experts' cannot admit that patients were right, about both pacing and the harm being done by GET.

It is nothing more than a cynical arse-covering marketing exercise.

 

I feel the effectiveness of any CBT is critically dependent on the person delivering it and the willingness of the person trying to engage with it.
My experience is related to adolescents (6), mainly for anxiety, 2 with private providers 4 with NHS. Of the 2 private attendees, 1 subsequently tried NHS ( private recourse due primarily to waiting times)
Only 1 of these children " stayed the course" with CBT. I would question it' s overall efficacy .
Differences private/ NHS mainly being that NHS is a very constrained ticky box option ( practitioners are not " allowed" to ask some kind of questions/ follow some lines of enquiry), private practitioners can alter to address issues as they arise with the client' s consent.

I appreciate that the adolescent experience is different, but given the procedures deployed i would suspect this applies to adults too.

Perhaps the most disconcerting aspect is that there is no NHS follow up to ascertain why someone has dropped out- a bit like a PIP assessment, it is a one sided view. The adolescents have all advised that " it made me feel like crap"

 

That is totally untrue. If GET is about stretching your limits, it isn't in your interests, first of all, to say that one of the interventions you did in your study was to explicitly instruct patients not to go over their limits.

I've experienced a few CFS practitioners who've applied GET, and I've done a program of GET, and it involved pacing well enough that I could do a bit of exercise, and then increasing it if I was able to do so without crashing. Was it particularly helpful? Not too much, but I did increase the amount of exercise I did over the course of a few years, and they were happy with that. Nobody forced me to do more exercise than I was able to do without crashing (fortunately).

They talked about it as if that was generally the way that it was done - you do exercise, and then you increase it if you're able to. Especially given that pacing is regarded as one of the key ways to manage CFS by almost everyone (even the pace trial showed it was helpful), there's almost certainly a big chunk of practitioners that apply it that way. Maybe you don't think that's proper GET, but it's certainly a thing that a lot of people call GET. It wouldn't surprise me if that's how the overwhelming majority of people apply GET nowadays.

 

And therefore that is pacing, not GET.

 

Well, it seems to be what a lot of practitioners call GET. It still involves a gradual increase in exercise, so I'd say calling it GET is pretty justified. It's been portrayed to me as how GET is applied nowadays. The group behind that study seem to have done quite a few studies relating to GET, and that seems to be how they view GET.

 

Its not easy to pick it all apart, I know. The whole thing is further complicated by the doublespeak people use in the area. Researchers will say certain things that conceal what they really think, to make their treatments more palatable to patients and therapists. Have another think about your statement above in that light - what would be the reason for claiming you're doing pacing as well as GET? Which one do you think they are placing their research hopes on? Why?

If you decide to spend some time here, you'll read lots of examples of good critical analysis, and you'll get good at sifting thought he words and getting at what's really being tested and claimed.

 

Well, the people I saw actually seemed to think pacing was more important than GET. It also doesn't make any sense for the group behind that study to say one of their interventions was to explicitly instruct patients not to exacerbate themselves, if their interest is to push patients beyond their limits. They'd be working very hard against their own interests.

I don't think this is a case of doublespeak, I think this is a case of people saying what they mean. If you read into everything that everyone says as a case of doublespeak, you're just giving yourself the freedom to decide whatever they think.