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

[Woolie]

I must go now, @petrichor, thanks for the discussion. If there's anything else you'd like to add in the discussion or if you have any questions about CBT, psychotherapy or behavioural interventions or anything else in my line of work, just tag me.

 

[Andy]

Well, the people I saw actually seemed to think pacing was more important than GET.

I don't think this is a case of doublespeak, I think this is a case of people saying what they mean.

But they still call it GET. So basically, assuming that this is taking place in the UK, they are calling it GET so that their program is in line with the current NHS guidelines but they are actually getting people to pace themselves in a structured way, which is no way what the current NHS guidelines say. So, in my opinion, yes, this is doublespeak - if they are pacing, they should call it pacing.

 

[Esther12]

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.

The PACE trial didn't show Adaptive Pacing Therapy (a particularly restrictive and therapist-led form of pacing created for the trial) was at all helpful. To me, it does sound a bit like you've been spun a story.

Thanks for letting us know what you've been told. It's quite normal for CFS therapists in the UK to adapt the claims they make according to the responses of their patient. They tend to try to avoid damaging debates by formulating a shared understanding of the illness which is acceptable to the patient, but still allows for a 'collaborative' approach to rehabilitation - some people find this sort of thing comforting rather than patronising and manipulative. I've heard different people describe the same clinic presenting vastly different views about what CFS is and how to treat it, and this seems to reflect a desire to manage the patient. I can't be certain what happened with you, maybe your therapist has engaging honestly with your concerns, and put forth their own view without concern for your response, but it's worth being aware that this is often not what happens in the UK.

If the GET that is now being applied is different from the form tested in trials like PACE, then it is even harder for those providing it to claim that they are conducting 'evidence based medicine'. It would be good if GET was now routinely being conducted in a much more cautious manner, but that's not to say that this sounds like a sensible use of funding.

If you think that whatever you've been doing has been helping you, then that's good, but personally I'd be sceptical of the claims made by those making money from claiming to be able to treat CFS.

 

[Snow Leopard]

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.

Mind if I ask which country you are from? The GET in Australia/America might be more pacing oriented than that of the UK/Netherlands.

One of the key Australian "GET" studies explicitly used the word "pacing" to describe their programme. (which was a fact not noted in the Cochrane review, so they pooled heterogenous treatments together, sigh).

As for sleep hygiene, various sleep studies have shown that sleep hygiene is not a problem for most patients and well, if knowledge of sleep hygiene is a problem, then surely a patient handout would be more effective than an expensive CBT programme?

 

[petrichor]

I'm pretty sure it's well established that insomnia, a delayed sleep cycle and sleep disturbances is pretty common in CFS. Sleep disturbance is even in the diagnostic criteria. And if you actually look at the data in the PACE trial, it does show people's fatigue scores in the pacing group getting better in the study, almost as much as those in the GET group (despite the fact that some of the authors seem to like to portray GET as some that's really effective - despite the data in their own trial).

I don't think any of you have any idea about how GET is applied in most clinics nowadays. From what I've seen, if some of you see any evidence to the contrary, you just write it off as double speak. The fact of the matter is applying GET, but not forcing patients to overdo themselves, seems to be very common nowadays. I've seen other people speak about it being applied that way on the internet, and it's been portrayed to me as the absolute norm and medical consensus. (Also, most of the people I've seen haven't been making money from it, because they've all seen patients with other conditions too.)

The studies by that group, when they describe how they apply GET, for instance, talk about applying it that way as if it's the norm.

 

[Esther12]

And if you actually look at the data in the PACE trial, it does show people's fatigue scores in the pacing group getting better in the study, almost as much as those in the GET group (despite the fact that some of the authors seem to like to portray GET as some that's really effective - despite the data in their own trial).

What specific data from PACE do you think showed that pacing was helpful? For the Chalder fatigue score, the addition of APT to SMC was not associated with an improvement in fatigue scores at 1 year, and fatigue scores in these groups were worse than those reported in the SMC+CBT/GET groups. By 2.5 years there was no significant difference between groups, so data from PACE did not suggest it was helpful to add any additional treatment to SMC (which itself lacked any evidence of efficacy).

Although there are well known problems with them, here's there graphs for primary outcomes from the 2011 PACE paper:



Right now, I can only recall one significant difference for an outcome that the addition of APT to SMC was associated with:

"Deterioration in physical function was more likely after adaptive pacing therapy."

http://www.sciencedirect.com/science/article/pii/S0022399914001883

As I expect you'll be aware, there are lots of problems with the way the PACE trial was designed, conducted and analysed, making it difficult to claim anything much about any of the treatments included, but I do not see how one can use the data from PACE to claim it showed that APT was helpful. I suppose one could reasonably arguing that PACE was such a humiliating disaster that it indicated the whole field around 'rehabilitation' and CFS is a quack-fest, and therefore patients should just be left to some form of 'pacing', but I doubt that would be the argument being put forth by someone being paid to provide GET.

"And if you actually look at the data in the PACE trial" - what data, specifically, are you referring to?

From what I've seen, if some of you see any evidence to the contrary, you just write it off as double speak.

What evidence? You just mean your anecdote about what you've been told? No-one has doubted your reported experience - it's just that generally people are quite rightly sceptical of the value of anecdotes like these.

Do you think that there has been any problem with 'double speak' around the way CFS patients are treated by those promoting GET?

The fact of the matter is applying GET, but not forcing patients to overdo themselves, seems to be very common nowadays. I've seen other people speak about it being applied that way on the internet, and it's been portrayed to me as the absolute norm and medical consensus. (Also, most of the people I've seen haven't been making money from it, because they've all seen patients with other conditions too.)

The studies by that group, when they describe how they apply GET, for instance, talk about applying it that way as if it's the norm.

What do you mean by 'forcing'? Do you think that people here assume GET involves being tied to a running machine or something? The spin and misrepresentation around GET can mean that people are inappropriately pressured to engage in GET programmes, but I don't think that anyone has mentioned that here. You seem to occasionally be misinterpreting what others are saying.

Why do you think that medical professionals who see patient with other conditions are not making money from when they provide GET to CFS patients?

What specific studies?

 

[Woolie]

Thanks to those who continued to patiently explain things after I logged off last night.

 

[petrichor]

What specific data from PACE do you think showed that pacing was helpful? For the Chalder fatigue score, the addition of APT to SMC was not associated with an improvement in fatigue scores at 1 year, and fatigue scores in these groups were worse than those reported in the SMC+CBT/GET groups. By 2.5 years there was no significant difference between groups, so data from PACE did not suggest it was helpful to add any additional treatment to SMC (which itself lacked any evidence of efficacy).

Although there are well known problems with them, here's there graphs for primary outcomes from the 2011 PACE paper:

View attachment 1368

Right now, I can only recall one significant difference for an outcome that the addition of APT to SMC was associated with:

"Deterioration in physical function was more likely after adaptive pacing therapy."

http://www.sciencedirect.com/science/article/pii/S0022399914001883

As I expect you'll be aware, there are lots of problems with the way the PACE trial was designed, conducted and analysed, making it difficult to claim anything much about any of the treatments included, but I do not see how one can use the data from PACE to claim it showed that APT was helpful. I suppose one could reasonably arguing that PACE was such a humiliating disaster that it indicated the whole field around 'rehabilitation' and CFS is a quack-fest, and therefore patients should just be left to some form of 'pacing', but I doubt that would be the argument being put forth by someone being paid to provide GET.

"And if you actually look at the data in the PACE trial" - what data, specifically, are you referring to?



What evidence? You just mean your anecdote about what you've been told? No-one has doubted your reported experience - it's just that generally people are quite rightly sceptical of the value of anecdotes like these.

Do you think that there has been any problem with 'double speak' around the way CFS patients are treated by those promoting GET?



What do you mean by 'forcing'? Do you think that people here assume GET involves being tied to a running machine or something? The spin and misrepresentation around GET can mean that people are inappropriately pressured to engage in GET programmes, but I don't think that anyone has mentioned that here. You seem to occasionally be misinterpreting what others are saying.

Why do you think that medical professionals who see patient with other conditions are not making money from when they provide GET to CFS patients?

What specific studies?

The diagrams that you've shown show that APT patient's fatigue scores do actually improve over time, by about four points on that scale. But yes, using the PACE trial as evidence for pacing being effective is questionable.

I've told you all about what I've experienced, and everyone has patronisingly explained how I've been spun a story or it's doublespeak, it's a way for them to make money, and they don't actually mean what everything indicates they do actually mean. (The nature of having other patients, by the way, is that you could stop seeing CFS patients, and your waiting list would halve, but you'd still have plenty of patients to see non-stop)

The evidence includes this quote from the study I linked (https://www.ncbi.nlm.nih.gov/pubmed/27620986): "The first comprised of compulsory modules focused on activity pacing and GET delivered by an exercise physiologist. The activity pacing component was based on the ‘envelope’ theory of CFS 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."

And, whilst everything indicates in the study that they view pacing and avoiding exacerbation as part of their intervention, for some reason everyone wants to deny that. If you go through the other studies of that group, that's how they apply GET in other studies. They don't view pacing as a manipulative technique, or a way as establishing a baseline - they view avoiding exacerbation as part of the intervention, along with GET. And that's how every CFS practitioner (about 8) that I've encountered has viewed GET. And they've all given the strong impression that is how everyone applies it.

There is simply no reasonable motivation for them misrepresenting that. I'm not saying that there aren't people that apply GET by trying to make patients go over their limits (there would be a lot), but there are a lot that don't.

(and you clearly know what I mean by forcing. The way everyone has described GET here is as a way to make the patients go over their limits.)

 

[Valentijn]

I'm pretty sure it's well established that insomnia, a delayed sleep cycle and sleep disturbances is pretty common in CFS.

Yes, sleep problems are very common. But it doesn't follow that sleep hygiene is the cure for those problems. To start with, there is no objective evidence that it helps, and most patients seem to report that they get sicker if they avoid sleeping during the day when they need to.

And if you actually look at the data in the PACE trial, it does show people's fatigue scores in the pacing group getting better in the study, almost as much as those in the GET group

Any group receiving any treatment in any trial will typically report some improvement on subjective measurements only, due to the placebo effect. This is why control groups are used, and the APT group didn't show any statistically significant improvement compared to the SMC control group. You can't just say that they did 4 points better on a questionnaire and therefore the intervention helped - statistical comparisons must be made.

The fact of the matter is applying GET, but not forcing patients to overdo themselves, seems to be very common nowadays.

GET is rarely about forcing - it's about manipulating. Patients are lied to about its efficacy and about what is known about the physiology of ME/CFS. They are told that it can cure them if they do it right, even though research has repeatedly shown that CBT and GET do not result in any objective improvements.

Do you understand the basis for GET? It was designed as a desensitization process, not to have any physiological impact. It is a psychological treatment, based on supposedly proving to the delusional patient that they can safely exercise, rather than taking the more overt CBT approach of telling patients outright. I am not basing this on conjecture - the researchers who adapted these treatments to ME/CFS have said as much themselves.

It does create confusion that different forms of GET are used in different situations. The desensitization hypothesis that GET is based upon says that symptom must be ignored and exercise should carry on regardless. If patients are instructed to respond to symptoms/fears they certainly won't desensitize - and in fact some researchers warn against rest and the harm that therapists can do by encouraging it in response to symptoms.

The obvious problem with true GET is that it makes patients with any form of exertion intolerance even sicker to ignore their limitations. This has led to GET-lite, which is symptom-responsive but still conducted with the belief that it can cure the patient. GET-lite is undoubtedly less physiologically harmful, but there is still no evidence that it cures or improves ME/CFS. And it can still be psychologically harmful in implicitly blaming the patient who doesn't recover, in raising false expectations in patients, and in giving the public, including insurers and doctors, the impression that the disease is easily curable.

Accordingly, GET has become a dirty word in the world of ME/CFS. Therapists have reacted to the opposition to GET by rebranding GET-lite and calling it pacing: it is not. Pacing is only about stabilization and limiting crashes. If there is a deliberate and primary goal to increase activity levels (especially structured exercises) or recover to some extent, it's GET-lite.

 

[Valentijn]

The evidence includes this quote from the study I linked (https://www.ncbi.nlm.nih.gov/pubmed/27620986):

It's hard to discuss an article which we can't see. Do you have a link to a non-paywalled version?

 

[Woolie]

@Valentijn, you can read it here.

Its actually not a good example of "soft GET" or "GET-that's-actually-pacing". Its hard GET. The pacing was done as a precursor to the GET proper to "establish an initial achievable level of structured regular exercise (e.g. walking), in addition to activities of daily living".

Once this was established it was "followed by graduated increases in exercise duration by approximately 20% of the nominated duration every two to three weeks, generally at a fixed low intensity. Once 30 minutes of continuous activity was achieved, the frequency of exercise sessions was increased."

The pacing was not of specific interest to the researchers: its effect on outcomes, prior to the administration of GET proper, was not assessed. The researchers only measured outcomes once, after the entire programme had been completed.

If we haven't discussed this paper on its own thread, I guess we probably should start one. But there's not that much to say, really, its more or less a mini PACE, but without some of PACE's stronger features.

 

[Diwi9]

Interesting and worthy debate.

@petrichor - Have you experienced ME-adapted CBT? What was your experience? Given that you have had years of GET, are you recovered? I'm not trying to chide you, but the researchers claim "recovery" with these approaches, so I'm genuinely interested.

In the context of this debate, risk vs. reward should not be lost. I'm unpersuaded that CBT and GET (even "soft" GET) need anymore advancement and promotion at the expense of biomedical research. The actual psychological inquiry that should be examined is why these techniques have not overwhelmingly worked...or what elements of ME make these approaches so ineffective?

As per sleep hygiene, neurologists do not even understand sleep in general, let alone the needs for ME patients. I cannot imagine that a masters-level counselor/therapist would have more than a cursory understanding past the "standard" advice.

ETA: typos

 

[petrichor]

@Valentijn, you can read it here.

Its actually not a good example of "soft GET" or "GET-that's-actually-pacing". Its hard GET. The pacing was done as a precursor to the GET proper to "establish an initial achievable level of structured regular exercise (e.g. walking), in addition to activities of daily living".

Once this was established it was "followed by graduated increases in exercise duration by approximately 20% of the nominated duration every two to three weeks, generally at a fixed low intensity. Once 30 minutes of continuous activity was achieved, the frequency of exercise sessions was increased."

The pacing was not of specific interest to the researchers: its effect on outcomes, prior to the administration of GET proper, was not assessed. The researchers only measured outcomes once, after the entire programme had been completed.

If we haven't discussed this paper on its own thread, I guess we probably should start one. But there's not that much to say, really, its more or less a mini PACE, but without some of PACE's stronger features.

You can't explicitly tell patients not to exacerbate themselves, and then make them ignore that. That is a direct contradiction. In addition, as I said earlier, it isn't in their interests to write they told patients not to exacerbate themselves, if the goal of their study is "hard GET" as you called it.

That would be counterproductive to the goal of their study (if they were trying to show "hard GET" is effective), and counterproductive to the kind of GET you seem to think they are applying.

 

[petrichor]

Interesting and worthy debate.

@petrichor - Have you experienced ME-adapted CBT? What was your experience? Given that you have had years of GET, are you recovered? I'm not trying to chide you, but the researchers claim "recovery" with these approaches, so I'm genuinely interested.

In the context of this debate, risk vs. reward should not be lost. I'm unpersuaded that CBT and GET (even "soft" GET) need anymore advancement and promotion at the expense of biomedical research. The actual psychological inquiry that should be examined is why these techniques have not overwhelmingly worked...or what elements of ME make these approaches so ineffective?

As per sleep hygiene, neurologists do not even understand sleep in general, let alone the needs for ME patients. I cannot imagine that a masters-level counselor/therapist would have more than a cursory understanding past the "standard" advice.

ETA: typos

No, I'm very far from recovered. I said earlier that it was only a little helpful. The important thing though, is at least it wasn't harmful, and I'm grateful for the extra bit of exercise I've been able to do.

 

[Woolie]

You can't explicitly tell patients not to exacerbate themselves, and then make them ignore that. That is a direct contradiction.

Yes, it is a direct contradiction. I think we are finally on the same page.

There are lots of these in work of this nature.

 

[petrichor]

Yes, it is a direct contradiction. I think we are finally on the same page.

There are lots of these in work of this nature.

In this case, especially given that they go on about a theory for why managing energy and not exacerbating works (the energy envelope), that strongly implies that they mean it. It doesn't make any sense otherwise. If their goal is to support hard GET, then they are working very hard against themselves.

Writing that off as some kind of double speak, or something, is just going too* far.

 

[Woolie]

@petrichor, can you tell us about your experiences as a patient undergoing GET?

 

[Valentijn]

In this case, especially given that they go on about a theory for why managing energy and not exacerbating works (the energy envelope), that strongly implies that they mean it.

It really doesn't matter what they "go on about". What matters is the methodology which is used. For example it's extremely common for a paper to mention PEM as a symptom in the intro, then use a recruitment criteria for which PEM isn't mandatory.

 

[Woolie]

It really doesn't matter what they "go on about". What matters is the methodology which is used. For example it's extremely common for a paper to mention PEM as a symptom in the intro, then use a recruitment criteria for which PEM isn't mandatory.

@petrichor, it takes a while to work out how to get the core of a study, how to tease apart what the intervention is actually designed to do from what the authors "go on about". And its easy to be misled when the study text is a little loose and free. I think this is sometimes done to make the underlying idea more palatable to patients, but sometimes its just a sign that the authors haven't quite thought things through.

The analyses people have presented in this thread are a good model of how to do it, and it won't be long before you're able to do it yourself.

 

[Esther12]

The diagrams that you've shown show that APT patient's fatigue scores do actually improve over time, by about four points on that scale. But yes, using the PACE trial as evidence for pacing being effective is questionable.

Even ignoring all the problems with PACE, and assuming that it was a well conducted trial and those were robust and meaningful results, one still cannot argue that APT + SMC leading to the same, or only slightly worse, results that SMC alone meant that APT "was helpful".

I've told you all about what I've experienced, and everyone has patronisingly explained how I've been spun a story or it's doublespeak, it's a way for them to make money, and they don't actually mean what everything indicates they do actually mean. (The nature of having other patients, by the way, is that you could stop seeing CFS patients, and your waiting list would halve, but you'd still have plenty of patients to see non-stop)

If we're going to talk about a patronising tone you did follow up your claim that "even the pace trial showed [pacing] was helpful" by saying that "if you actually look at the data in the PACE trial"... I'd suggest that this is a slightly patronising way of speaking, particularly considering you were wrong, and were speaking to people who have spent a lot of time actually looking at the data from the PACE trial, picking it apart, looking into how it was spun, etc.

It's worth bearing in mind that when concerns about PACE were first being raised, people would be dismissed as conspiracy theorists refusing to trust the PACE researchers own words. It has since been shown that many concerns about double-speak and misleading claims were quite justified.

You seem to take peoples concerns about double-speak and misleading claims personally in a way which I do not think they were intended to be.

The evidence includes this quote from the study I linked (https://www.ncbi.nlm.nih.gov/pubmed/27620986): "The first comprised of compulsory modules focused on activity pacing and GET delivered by an exercise physiologist. The activity pacing component was based on the ‘envelope’ theory of CFS 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."

And, whilst everything indicates in the study that they view pacing and avoiding exacerbation as part of their intervention, for some reason everyone wants to deny that. If you go through the other studies of that group, that's how they apply GET in other studies. They don't view pacing as a manipulative technique, or a way as establishing a baseline - they view avoiding exacerbation as part of the intervention, along with GET. And that's how every CFS practitioner (about 8) that I've encountered has viewed GET. And they've all given the strong impression that is how everyone applies it.

I've not read that study, so haven't denied anything about it. I can only comment on the parts you've quoted. Do you know if their treatment manuals are publicly available?

As for Lloyd and double speak, there is this attempt to smear those raising legitimate concerns about the PACE trial:

This dispute between the various protagonists recently surfaced with the PACE trial published in the Lancet [2], which provided evidence for effectiveness of elements of cognitive-behavioural therapy (CBT) and graded exercise therapy (GET) for patients with CFS. This publication triggered unscientific and sometimes personal attacks on the researchers in both the scientific literature [3–10] and via the Internet [11].

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http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02468.x/full

Do you think it is fair to describe any of the cited examples as "unscientific and sometimes personal attacks"?

Back when the people were raising concerns, and being smeared for doing so, where were your GET providers? Did they 'actually look at the data from the PACE trial'? If so, why do you think that they failed to speak out about this, or the way patients raising concerns were being attacked? Do you think that this silence says anything about the personal integrity of those providing GET?

There is simply no reasonable motivation for them misrepresenting that.

I can't say whether they actually did misreport anything in a paper I've not even read, but that is clearly not true. It is in their interests to make themselves sound as good and reasonable as possible. Over the last few years there have been big changes in the way PACE, GET, pacing, etc are viewed, and just that would provide an incentive for altering how it was they presented their intervention.

What do you think of the way the Lightning Process was described in the SMILE papers? Full and frank? Or maybe you spotted some evasive double-speak?

(and you clearly know what I mean by forcing. The way everyone has described GET here is as a way to make the patients go over their limits.)

I don't know what you mean by forcing. Just to be clear, do you think a GET programme where patients were encouraged to steadily increasing exercise, and were discouraged from decreasing activity in response to an increase in symptoms (on the assumption that this exacerbation would fade in time as the patient became used to their new level of activity) should be considered as 'forcing' patients to go over their limits?