Graded activity is an important component in CBT to reduce severe fatigue: cancer survivors (Knoop et al., 2019)

In case it's of interest to anybody

Free full text:
https://www.tandfonline.com/doi/full/10.1080/0284186X.2019.1659513

 

So, these people were able to wear an actometer for 12 consecutive days (and nights).

 

Their key innovation here seems to be not having a control group that did not received CBT/GET.

I' thought I'd repost comments from the old place on results from a different CBT for cancer-fatigue trial this team did that showed no improvement in objectively measured activity levels.

The rest of this post is on a different but relevent paper - hope that doesn't lead to confusion:

Results are the same as for CFS, with CBT leading to improvements in questionnaire scores, but not objective measures of illness. They're more open about this being a problem than they were with their CFS results, but still try very hard to avoid mentioning even the possibility that their questionnaires are not reliable measures of outcome for cognitive or behavioural interventions (and succeed!).

Full paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3360858/

I picked some bits out, but it's quite a short paper, so people might prefer to just read it themselves.

Couple of bits making it clear that, if CBT were working as intended, activity levels would increase:

Nice they can be certain of this:

Looks like the control was waiting list only, so lots of room for response bias.

Again they decide to assume that perpetuating factors are entirely reversible and cognitive/behavioural, based on.... wish thinking? (pragmatism):

Worth noting that 'top-up' sessions were available in the second six months:

For those of you really interested in mediation analyses, there's a fair bit of it, and I'm too tired to dig into that right now (someone explained bootstrapping to me... I understood it for a bit!).

No significant relationship between changes in physical function, and changes in fatigue questionnaire scores:

I'm going to post all of their discussion, because it's a bit funny to me that they explore so many possibilities, without ever considering whether their highly effective cognitive-behavioural treatment might just be inducing response bias when compared to a waiting list control. We have no evidence that fatigue questionnaires are reliable ways of assessing cognitive and behavioural interventions.

Also, they keep trying to come up with ways in which patients could have increased their activity... but that just didn't show up.

 

I need to read the paper but this seems a but crazy. I thought CBT for fatigue consisted in persuading people that is they were more positive about doing more activity they would discover they felt better. So the CBT group without activity would be told that if they were more positive --- er wait a minute not just yet --- about, er we will tell you later what about -- more positive sort of thing then they would discover they felt better from just having CBT with no message, um.

Not surprising it did not go down too well.

 

From the introduction:

A previous study of our research group showed that an increase in objective physical activity did not mediate the effect of CBT on severe post-cancer fatigue [6]. This was also found in CBT for chronic fatigue in other patient populations (e.g., chronic fatigue syndrome and Diabetes type 1) [7–9]. In these populations, the effect of CBT on fatigue severity was mediated by an increase in the level of perceived activity and sense of control with respect to fatigue [7].

So they admit that patients reporting they feel better is not because they actually do more but because they perceive that they do more. In other words it is a pure brainwashing con. You tell people they will feel better if they do more but actually it is just that they say they feel better if they think they are doing more. After all they are just little bundles of irrational human psychology to play around with.

Then they say:

We conducted a pragmatic clinical crossover trial to examine the effect of the graded activity component of CBT in reducing fatigue severity compared to the other elements of CBT.

Well, as I pointed out at the NICE committee, Wikipedia says that pragmatic studies are incapable of demonstrating cause and effect relationships - such as that a treatment caused an effect. They just show correlations. So presumably the trial was a waste of time. But then we could see that from the abstract.

How do people get away with being so incompetent?

Why is it always the same people? Do they have a bit of cortex missing - the bit that other people use to understand human psychology?

 

(Not a response to any preceding posts).

Presumably carefully graded activity is legitimate for post cancer sufferers' fatigue issues, given ME is the (mostly) odd one out where the physiology does not respond to exercise they way people expect. I think @PhysiosforME recently said they were doing something positive with cancer sufferers in this regard.

 

I don't actually see any reason to think that is necessarily so.

What is post-cancer fatigue anyway? I am not aware of ever having come across someone who had prolonged fatigue after successful treatment of cancer. And I have looked after sores of people in that situation.

I strongly suspect that this group of physicians collect people with fatigue in any situation and if they have been through the mill with cancer it is called post-cancer fatigue. For all we know it may be ME. If viruses can precipitate ME why not a course of chemotherapy and a few operations?

They admit that people are not getting better because they are doing more activity. I fail to see the case for pretending to people that they will get better if they do more activity when in fact it is just that people seem to say they feel better in association with perceiving that they are doing more. The whole thing is complete gobbledegook. (or GET-a-babble.)

 

Yes that was me! My day job is to set up and manage a programme of support for people who have just finished cancer treatment and I've also just completed a cancer rehab exercise practitioners course - physical activity makes a huge difference to improving cancer related fatigue. It's actually proving to be surprisingly useful when discussing exercise and ME as I can say "whereas for people with cancer, physical activity can make a huge difference to improving fatigue, the same cannot be said for ME". It shows that we know when exercise is a useful treatment and when it isn't.

 

Yes, that does make sense as a non-trivial possibility.

@PhysiosforME: I think (but may have got the wrong end of the stick) you said you were having some success with cancer patients and their fatigue. What are your thoughts on this?

ETA: X-posted with @PhysiosforME .

 

If so, are PWME pre-disposed?

https://www.s4me.info/threads/mglur...-in-cancer-patients-2018-saligan-et-al.11261/

 

Probably easiest to share some info from Macmillan
https://www.macmillan.org.uk/inform...ptoms/tiredness/what-causes-fatigue.html#6394

https://www.macmillan.org.uk/inform...edness/tips-manage-symptoms-fatigue.html#6389

There are quite a few systematic reviews out there as well (but my brain isn't up to finding them on a Saturday night!)

 

So it seems that next time they do a trial, or indeed when they do routine treatment, they will have to, in the information sheet for patients, explain that the treatment involves persuading people to think they are doing more, even though doing more does not actually make them better, it is just that they get better if they think they are doing more?

 

But hang on, these authors seem to be saying that it isn't actually more activity that makes people better at all. It is just that if they think they are doing more they will say they are better. Are there actually any studies that, in contrast, suggest that doing more activity actually mediates feeling better?

 

I may be misinterpreting the paper but it looks to me to be disproving that activity is actually any use in post cancer fatigue.

 

I don't know if it was this group, but I remember researchers making the case that CFS patients have a temporary increase in physical activity at the beginning of the treatment and that this behavioural experiment is helpful in changing their cognitions.

So their model would be similar to that for arachnophobia: brief exposure to spiders would be enough for patients to realize that they don't have to be afraid. Briefly increasing CFS patients physical activity level would be sufficient to show them it's not harmful, indicating they are not suffering from an incurable neurological disease etc.

 

But is any of this reliable evidence or just spin? Macmillan give no references. The systematic reviews we have seen on exercise for fatigue are dreadful by and large.

 

But it sounds as if they are saying, by analogy that after treatment people are no better at coping with spiders, they just say they are. (Which I would be prepared to bet is because that is what they think they are supposed to say!)

 

I know of a few people who have not been able to return to work after having undergone chemotherapy because of the never ending fatigue that the chemo caused. My neighbour hasn't been able to work for at least 10 years now. It's real just as ME fatigue is real.