Apart from the obvious acknowledgement that physical activity matters and is key to the treatment, that's actually how CBT for ME was supposed to work. The underlying illness narrative was bunk of course, adapted so it would become something CBT could tackle, but that mountain of a distortion aside, believe it or not, the way the therapy was supposed to work itself initially made sense within that wrong framework:
Changing "hindering" cognitions (like "there's something physically wrong with me") would theoretically lower the treshold to the desired behaviour, activity, and was also meant to keep the patient on the activity-expanding program. With expanding activity (cancelling the "avoidance") the patient was supposed to discover that their cognitions about their disability and there being a physical impediment to activity and recovery were wrong, the physical activity was indeed meant to work as a catalyst for change in cognitions. (Edited to add: ) And those changed cognitions were then supposed to reinforce the adherence to the increase-activity program, start from the top of this paragraph.
The whole thing is based on Operant Conditioning influenced by and in its turn influencing changes in cognition . However, like I explained earlier here, if Presented Positive (increasing activities, huzzah!) and Omitted Negative (no awful symptoms from increasing activities, yay!) don't actually happen, and therefore don't lead to the desired behavioural change, then the therapy has failed. And what people like Knoop do is papering over the OC effect not happening by temporarily influencing questionnnaire answers, and making them about a subjective "fatigue" sensation that the patient has just been elaborately influenced to assess differently and dismiss. As Knoop acts like the PP and ON don't even matter anymore, CBT for ME is not just a failure in terms of applying a psychiatric therapy for neurosis on a serious multisystemic illness, but also in terms of its own aims, as the B in CBT doesn't fly.
"Two Dutch commentators, Hans Knoop and Jan Wiborg, from the Knowledge Center for Chronic Fatigue (Radboudumc) assume that an increase in physical activity acts as 'a catalyst to bring about changes in cognitions about activity and symptoms in patients with CFS'. According to them, research should focus on how the mindset of patients can be changed even faster and more effectively in that regard, they argue."
Wryness aside, as others have noted here, the argument that "there is no correlation between the objective and subjective outcome parameters" is bizarre. (And if that's so then why not ditch the subjective one and switch to the outcome that can show actual, real life change, as you can't infer that from the subjective outcome?)
Having followed the Long Covid subreddit, and what I saw on twitter, from thousands of comments and hundreds of threads specifically on the theme of "I am recovered", there is one universal theme among them all. It's not about what lead to recovery, what treatments they took, what they thought or anything they did.
Without fail, 100% of them, really literally ALL of them, have the exact same definition of recovery: I am back to being active. Usually even up to back to being fit, to running, biking, going to the gym, etc.
Every. Last. One. Of. Them. Sometimes it's more banal, a simple being back to work, hobbies, socializing. Whatever. All of them have the exact same definition: I am back to my old self, I am active again, I do things I was no longer able to do while ill.
What these people are arguing is some of the most cynical, disingenuous nonsense ever said by a human being. And wow is that a though competition. It is embodied by their extreme insult of "they don't want to get better". They represent a level of dishonest that is at least comparable to the lies told by tobacco companies. Especially given that they explicitly write that the actual goal is to get patients to be more active, then actually have the shamelessness to pretend it's not relevant, something they explicitly make as a goal and would gloat endlessly if it was actually true.
They know it's false. They're not that incompetent. And still they lie, in academic literature, to their colleagues, to the world, about things they cannot possibly be unaware of since they are universal to every single patient testimony I have seen.
"Fatigue is generally associated with low physical activity in patients with various chronic medical conditions. However, such an association has not been reported among patients with rheumatoid arthritis" (RA)
Conclusion: "Among patients with RA, a higher level of daily physical activity was associated with reduced levels of fatigue."("This was not explained by....pain, disability or other disease-related factors.")
] "Based on the results obtained from this study, patients with RA who have a high level of daily physical activity have less fatigue than patients with low daily physical activity; moreover, the level of activity is not associated with pain, disability, coping, or cognition.
"It is important to note that decreased physical activity has been associated with increased fatigue in patients with CFS, Sjörgen's disease and breast cancer."
By making the distinction between provoking and perpetuating factors the impeding nature of the somatic attribution becomes neutralized. This creates space for it activity regulation and activity increase.
I went down the rabbit hole that is Knoops dissertation on this topic, which includes his views and several papers he authored with Bleijenberg, Van der Meer and White.
I took out what I considered relevant quotes. It's a lot, but I suspect of interest if you want to see more of what Knoop said about the connection between physical activity and CBT, and fatigue, and if you want to know more about Knoop's special way of reasoning and the actual substantiation for his claims up to 2008. (which is none.)
In the latter, 91 of the 96 patients had PEM, and that's excluding 11 dropouts during treatment. In the general discussion of his dissertation, Knoop admits that in this study, after CBT, there was no significant association between their subjective questionnaire outcomes ("level of fatigue") and the actual objective physical activity levels, and that 13 of the 46 patients that fit a very strict criterion for recovery (based on fatigue) still had a physical activity level below that of healthy controls.
But hey, we're in KnoopWorld.
So in typical Knoopian fashion, he concludes from this that "This means that it is possible to recover from CFS without reaching a physical activity level that is within normal limits."
However, this is relevant information regarding their subjective questionnaire outcomes, as they concluded it was a success in the actual publication, saying that 70% no longer fit the Fukuda criteria for CFS and that "Depending on the definition used, up to 59% of the patients recovered. Even if we used the most conservative definition of recovery, 23% fully recovered. We therefore conclude that recovery from CFS following CBT is possible."
Caution, mammoth spoiler text below!
CFS is characterized by severe fatigue lasting longer than six months and leading to a substantial reduction of activities.
["High activity"patients:] By means of a systematic program, they first increase their physical activity (walking of cycling), and then they gradually resume work and other activities of daily life.
["Low activity" patients:] After entering treatment, they immediately start with a graded physical activity program followed by a systematic increase of mental, social and work related activities.
To examine if recovery was possible we used different definitions of recovery that encompassed three elements: no longer being severely fatigued, being able to resume all activities, and a perception of health and fatigue that is similar to the perception of healthy persons.
The self-instructions were derived from the protocol for CBT that .... is aimed at changing fatigue related cognitions and a gradual increase of activities
Vercoulen et al showed that there are several factors that perpetuate the CFS symptoms. These factors are physical inactivity,.... All these factors were assessed at baseline in the present study. The physical activity level was measured with an actometer, a motion-sensing device worn at the ankle that quantifies physical activity.
EDIT: I think I confused two studies on guided self-instruction, will look at it and correct. From a then-unpublished paper, the abstract also says: "An intention-to-treat analysis showed a significant decrease in fatigue and disability after self-instruction. The level of disability was negatively correlated with treatment outcome."
The published version 340 340..341 (cambridge.org) does not mention that actometer assessment was done, nor the claim that physical activity had no significant association with the questionnaire outcomes. I'm cognitively not at my best, but, this might be an interesting study to add to a collection of Knoop studies & actigraphy, as is the following text:
***
Some authors state that the goal of CBT for CFS is to help patients improve activity levels and quality of life, rather than to overcome symptoms. They find empirical support for this point of view in the fact that CFS patients continue to experience more fatigue than healthy controls after successful treatment with CBT, that only a minority of treated patients meet the criteria of full recovery and that some patients with a positive outcome directly following treatment relapse in the long term..... In chapter 5, we empirically tested the controversy about the nature of change following treatment by defining recovery in constructs that can be assessed more or less objectively..... This seemed to us more fruitful than... exchanging ideological viewpoints. It is important to note that the question was (and is) whether recovery is possible, not how many patients actually recover. Therefore, the aforementioned findings, e.g. that CFS patients as a group are more fatigued than healthy people after treatment, are not essential to answer this question.
...
In chapter 5, we did not look at the physical activity level of patients after CBT but mostly relied on self-reported change in symptoms and behaviour. As an increase of physical activity is seen as an important element of CBT, it would be interesting to look at the change in the scores on the actometer, a motion sensing device that reliably measures the actual level of physical activity of a patient. Re-examination of the available data of the 96 patients in the recovery study (chapter 5) showed that after CBT and when measured with the actometer, 59 patients (62%) had a level of physical activity that was within the mean minus one standard deviation of healthy controls.8 At baseline, before treatment, 35% of the patients had an activity level within normal limits. The increase in the proportion of patients with an activity level within normal limits is statistically significant (χ 2-test). Chapter 3 showed that the level of physical activity measured with the actometer also significantly increased in adolescent CFS patients after a successful CBT.
Is the increase in physical activity necessary to recover from CFS? The available data suggest that it is not. Again, we revisited the data of the cohort of patients from chapter 5. There was no significant correlation between the decrease of fatigue severity and increase of physical activity (pearson r= -.06, p= 0.552). After CBT, there was also no significant association between the level of fatigue and the physical activity level (pearson r= -.18). Thirteen of the 46 patients that had a level of fatigue within the mean plus one standard deviation of healthy controls after CBT, being a very strict criterion for recovery, still had a physical activity level below that of healthy controls. The activity level of these 13 patients (13/46= 28%) was, even after CBT, more than one standard deviation below the mean of healthy controls.
This means that it is possible to recover from CFS without reaching a physical activity level that is within normal limits. As most CBT protocols for CFS emphasize the importance of increasing the patient’s physical activity level to reduce fatigue and disabilities, it is remarkable to find that the relationship between an increase in physical activity and a
decrease of fatigue is weak.
We conclude from this, that rather than the increase in physical activity, changes in cognitions play a crucial role in reaching recovery. Increasing activity levels is important because it facilitates the change in the cognitions about fatigue and disabilities, yet it is not the main mechanism of change in CBT for CFS.
We see an analogy: the lack of connection between neuropsychological test performance and complaints about
mental functioning is very similar to the lack of connection between changes in physical activity and the reduction of fatigue. The improvement in fatigue severity or self-reported cognitive impairments is not related to changes in objective test performance or physical activity. We consider this evidence for the central role of perception and cognitions in CFS.
The physical activity-fatigue bit here hadn't afaik been established anywhere in this document beyond their unpublished conclusion from the actometer results from 340 340..341 (cambridge.org) mentioned aboveand the unpublished re-visiting and creative reasoning from data from Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? - PubMed (nih.gov) that shows their questionnaires used in that study meant squat in determining if a patient improves from CBT.
Also, at the end of this thesis Knoop says in dutch about this study: "Not only the effect of the treatment on fatigue and patients' activities was examined, .."(GT eng)
It should be noted that in both these publications, post-CBT actigraphy was done in the study while the results were not part of the publication. In the Knoop et al "Is a full recovery..." paper ("chapter 5"), 91 of the 96 patients had PEM, and that's excluding 13 dropouts during treatment. In the general discussion, Knoop admits that after CBT, there was no significant association between their subjective questionnaire outcomes ("level of fatigue") and the actual objective physical activity levels, and that 13 of the 46 patients that fit a very strict criterion for recovery (based on still had a physical activity level below that of healthy controls.
Of course in typical Knoopian fashion, he concludes from this that "This means that it is possible to recover from CFS without reaching a physical activity level that is within normal limits."
Furthermore, we did not find an association between a change in the level of physical activity and a reduction of fatigue severity after CBT. Recovery of CFS was possible, even if the physical activity level of the patient remained
low. If there are no direct connections between the level of physical activity and/or fitness of CFS patients and the response to therapy what could be the role of graded physical activity in CFS?
the majority of CFS patients have a fluctuating activity pattern, in which bursts of activity leading to an increase of symptoms are followed by periods of inactivity. They are not characterised by activity-impeding cognitions.
The graded activity has a function in changing the perception and to elicit positive feedback that patients receive
when they increase their level of activity (from others and from the evaluation of one’s own behaviour). The change in perception and elicited feedback will also lead to an increased self-efficacy and a decreased focus on bodily symptoms, both factors that perpetuate the fatigue. This would explain how fatigue severity can decrease as a consequence of the
graded activity program.
The aforementioned hypothetical mechanisms of change in CBT would imply that the central disorder in CFS is one of perception of bodily symptoms and one’s own performance and activity in relation to the symptoms
If physical activity is crucial for the positive effects of CBT, one would expect that the patients who increase their physical activity will show a larger reduction in fatigue and disabilities.
The finding that a low physical activity was a predictor of treatment outcome led to an adjustment of the protocol of CBT for CFS. After this adjustment, the activity pattern no longer predicted treatment outcome.
CFS is characterized by severe fatigue lasting longer than six months and leading to a substantial reduction of activities. .... Cognitive behaviour therapy (CBT) is an evidence based treatment for CFS that leads to a reduction of fatigue and disabilities
IMO, like NelliePledge says above, that indeed sums up Knoop's approach to tackle problems (for him) in CBT claims.
I get the impression that Knoop is his own special category with the way he tries to put reason to bullshit, like he created his own fantasy land with shifting goal posts to explain away obvious gaping holes in the real-life efficacy of his CBT for ME.
No effect on actual activity levels? No prob, that means it doesn't matter.
Those who are "recovered" actually still aren't able to match the activity levels of healthy controls? No prob, that just means you can recover without reaching a physical activity level that is within normal limits
Expanding recruitment of participants for a study on prevention of chronic fatigue to 12 months of fatigue after the actue phase of covid-19 means defeats the whole study aim of prevention? No problem, these other CBT studies that were not about prevention recruited participants who were sick for years, so treating someone who has 12 months of chronic fatigue is still means prevention.
Criticism that he uses subjective outcomes and ditches easy obtainable objective ones? No problem, "medical research is increasingly moving away from objective outcomes" and patient organizations are obsessed with objective measures. Also, objective measures are also subjective. (So it means it doesn't matter.)
Patients with medical co-morbidities have significantly higher levels of disabilities after treatment than those without? No problem, this just means that less stringent criteria for recovery should be used, to "incorporate the effect of the co-morbidity".
No actual improvement shown in actigraphy and patients not recovering following the actual meaning of the word (becoming well again after an illness or injury/becoming successful or normal again after problems/getting something back) and what is a normal expectation when one speaks of recovery? No prob, it means that "recovery is a construction. The percentage of recovered patients differed depending on the definition of recovery used. It is possible that a patient has another concept of recovery than the therapist. It is important that they jointly (re)formulate a definition which forms the objective of the treatment." Et voilà, "recovery"
etc.
I cover mostly early CBT stuff from the UK, and I've seen a lot of bullshittery, but not like this. What makes it so extra bad is that in all these examples you are lured into debating reality and What Words Mean before you can even get to the actual criticism.
IMO, like NelliePledge says above, that indeed sums up Knoop's approach to tackle problems (for him) in CBT claims.
I get the impression that Knoop is his own special category with the way he tries to put reason to bullshit, like he created his own fantasy land with shifting goal posts to explain away obvious gaping holes in the real-life efficacy of his CBT for ME.
No effect on actual activity levels? No prob, that means it doesn't matter.
Those who are "recovered" actually still aren't able to match the activity levels of healthy controls? No prob, that just means you can recover without reaching a physical activity level that is within normal limits
Expanding recruitment of participants for a study on prevention of chronic fatigue to 12 months of fatigue after the actue phase of covid-19 means defeats the whole study aim of prevention? No problem, these other CBT studies that were not about prevention recruited participants who were sick for years, so treating someone who has 12 months of chronic fatigue is still means prevention.
Criticism that he uses subjective outcomes and ditches easy obtainable objective ones? No problem, "medical research is increasingly moving away from objective outcomes" and patient organizations are obsessed with objective measures. Also, objective measures are also subjective. (So it means it doesn't matter.)
Patients with medical co-morbidities have significantly higher levels of disabilities after treatment than those without? No problem, this just means that less stringent criteria for recovery should be used, to "incorporate the effect of the co-morbidity".
No actual improvement shown in actigraphy and patients not recovering following the actual meaning of the word (becoming well again after an illness or injury/becoming successful or normal again after problems/getting something back) and what is a normal expectation when one speaks of recovery? No prob, it means that "recovery is a construction. The percentage of recovered patients differed depending on the definition of recovery used. It is possible that a patient has another concept of recovery than the therapist. It is important that they jointly (re)formulate a definition which forms the objective of the treatment." Et voilà, "recovery"
etc.
I cover mostly early CBT stuff from the UK, and I've seen a lot of bullshittery, but not like this.
"Fatigue is generally associated with low physical activity in patients with various chronic medical conditions. However, such an association has not been reported among patients with rheumatoid arthritis" (RA)
Conclusion: "Among patients with RA, a higher level of daily physical activity was associated with reduced levels of fatigue."("This was not explained by....pain, disability or other disease-related factors.")
"Based on the results obtained from this study, patients with RA who have a high level of daily physical activity have less fatigue than patients with low daily physical activity;”
"It is important to note that decreased physical activity has been associated with increased fatigue in patients with CFS, Sjörgen's disease and breast cancer."
so, in other words, there is an inverse relationship between fatigue and physical functioning in in patients with RA, CFS, Sjörgen's disease, breast cancer etc as everybody knows from experience.
But in the recover study, they claim that that is incorrect because otherwise they can’t state that their treatment is effective. Aka, our treatment is always effective, irrespective of the outcome of our studies.
Excellent, thank you! I see there's a lot to work with. the challenge with this piece is that they say 80%+ did not have the low activity levels, so in that sense if they are severely fatigued they don't match the baseline low activity pattern that they claim would be needed to show increases in physical activity. So it seems they're starting from a different place than in previous studies. I think. It's hard to tell because we have no idea what they mean by "fluctuating" levels and what levels those actually are. They provide no details in their response to the correspondence.
Also, in the full recovery paper, which I've reviewed before, they acknowledge that they used the wrong statistical method to determine the "normal range," just like in PACE. They used the method designed for data that falls into a normal distribution, not data skewed toward the positive end, which would generate different results and lead to fewer falling within their parameters for "recovery."
Well, no actually this has elaborately been discussed in the UK branch. Theoretically deconditioning leads to symptoms, that lead to unnecessary avoidance, that leads to further disability through deconditioning, the vicious cycle. And "distorted" cognitions, keep the avoidance and thus the deconditioning in place. If that doesn't hold up then you can't just declare it a mystery.
Currently, a study investigating the response of CFS patients to virtual physical activity is in preparation.
The change in the experience of fatigue following CBT
For most people, fatigue is a pleasant and normal phenomenon after a period of activity. CFS patients not only report severe fatigue, the perceived quality of their fatigue is often very different from that of healthy people. For patients with CFS, fatigue has a profound negative connotation. An important goal of the treatment is to make the perception of the fatigue comparable to that of a healthy person, meaning that the patient experiences the fatigue as something normal, without persistent negative connotations.
Patients: our "fatigue" is not the phenomenon healthy people experience. Also, it fucking sucks as it feels horrible and I can't do shit, so it's ruining my life.
Knoop: I'm going to treat that by making their perception of their fatigue comparable to that of a healthy person so they will experience it as something normal that's not negative.
The change in the experience of fatigue following CBT
For most people, fatigue is a pleasant and normal phenomenon after a period of activity. CFS patients not only report severe fatigue, the perceived quality of their fatigue is often very different from that of healthy people. For patients with CFS, fatigue has a profound negative connotation. An important goal of the treatment is to make the perception of the fatigue comparable to that of a healthy person, meaning that the patient experiences the fatigue as something normal, without persistent negative connotations.
They really haven't a clue and that's dangerous. You can see why they cling to calling ME/CFS chronic fatigue syndrome. They actually think we are just pleasantly tired and just interpreting that as being ill.
It's the same as the BPS people persisting in calling PEM post exertional fatigue. It normalises it into something everyone gets.
So it seems they're starting from a different place than in previous studies. I think. It's hard to tell because we have no idea what they mean by "fluctuating" levels and what levels those actually are.
I'm not sure if they start from a different place than previous studies, at least Dutch ones. It's the standard ingrediënt of dutch CBT, inserted by Bleijenberg seemingly to catch the obvious flaw in the deconditioning theory that a lot of patients are actually active, to divide patients into two groups and give each a slightly different approach. It's simplistic: "low" actives have to immediately start with activity expansion, "high" actives first have to be taught by the therapist to equally divide their energy over the day and thèn start the expansion of activity. So they address, as ReCOVer says, "a low or unevenly distributed activity level". (Hey, if you believe that is a "perpetuating factor" like ReCOVer says, apart from all the other issues, the actigraphy would tell you if that "perpetuating factor" has disappeared no? And if it hasn't while you claim the patient recovered, is it a perpetuating factor?)
There's info on it in Knoops dissertation. If I recall right he low activity group in one study was for example determined by their activity level in comparison to the other participants, so within-group.
I regrettably can't look it up anymore, maybe another time. But indeed Kuut et al. should be clear about what they mean in this case.
Yes, Knoop did, in the introduction of his dissertation.
Also:
It would also be worthwhile to test whether a change in the experience of fatigue after successful CBT, more specifically whether fatigue has once again become a normal or even pleasant experience, protects a patient from future relapses in the future.
(I'm sorry if this is difficult to read. It's important to drag this stuff into the light, but I often feel guilty as I realise that it might be upsetting to read.)
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EDIT: I think I made a mistake and confused two studies on guided self-instructions by Knoop et al. - will look at it and correct
by the therapist to equally divide their energy over the day and thèn start the expansion of activity. So they address, as ReCOVer says, "a low or unevenly distributed activity level". (Hey, if you believe that is a "perpetuating factor" like ReCOVer says, apart from all the other issues, the actigraphy would tell you if that "perpetuating factor" has disappeared no? And if it hasn't while you claim the patient recovered, is it a perpetuating factor?)