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ABC radio - Comparison of treatments for CFS - PACE trial

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5,238
Location
Sofa, UK
One thing I would add:

CBT is not universally accepted as being helpful to people per se. Its proponents make enormous claims for its efficacy across the range of human problems.

BUT

It has key critics who are concerned at the basic presumptions informing CBT...

We mustn't assume that CBT is good per se. That claim itself is contested, independently of ME/CFS.

A year or so ago I spoke to a few people I know and respect who work on counselling and psychotherapy and asked for their views on CBT. Universally they confirmed the scepticism and I sensed a degree of resentment of the growing dominance of the approach. (And I wondered whether other approaches to psychology and psychotherapy might be important allies for us).

One point that rang true was that CBT is gaining popularity because it is supposedly more 'scientific' and more amenable to scientific analysis. I was told that the way it's structured makes that true, to a degree, but that it seemed likely that it wasn't particularly more effective than other forms of therapy but just easier to produce (apparent) evidence in its favour.

I still think the dutch actometer data should have been a potential killer blow, and it's the stand-out thing about PACE, for me, the way they failed to do that follow-up. Consider: the Dutch results seemed to show that when patients filled in questionnaires to the effect that "I am more active after the therapy", the actometer data showed this was not true. If PACE had confirmed this - which it easily could have done if the actometers had been retained after the study - that would have undermined the entire evidence base for questionnaire-based assessments of success. That wouldn't just affect CBT for ME/CFS, but potentially make all questionnaire-based assessments unsafe. It could perhaps have undermined CBT as a whole and a lot more besides.

No wonder they decided halfway through their study to change the protocol and not apply this test!

But in doing so they exposed their own manipulation of methodology in order to fit the results they want to demonstrate. And combined with the timing of the release of the dutch data just before the decision to abandon actomers (I think...I'd like to see all that worked up as a full chronology), that swings the way it looks from confirmation bias to conscious fraud, for me - not, perhaps, legally speaking, but in practice "this decision was for the participants own good because it wasn't fair to ask them to wear actometers again" strains credibility to breaking point.
 

Snow Leopard

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Sean

Senior Member
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7,378
...that swings the way it looks from confirmation bias to conscious fraud, for me - not, perhaps, legally speaking, but in practice "this decision was for the participants own good because it wasn't fair to ask them to wear actometers again" strains credibility to breaking point.

They are dangerously close to fraud on some PACE stuff. That is about the most generous interpretation that can be put on it.

When I read White & Chalder's truly pathetic 'justification' for not using actometers at outcome, I knew PACE was not going to be rigourous or fair, and I lost what little faith, respect, and patience I might have had left for that side of the debate. Anybody who so casually and inappropriately rejects using highly relevant and easily obtainable objective measures of effect, especially when baseline data has been gathered and funding is available for collecting outcome data, is not worthy of the title 'research scientist'.
 

Dolphin

Senior Member
Messages
17,567
Some of the letters submitted dealt with the point that has been raised in this discussion and was raised in the interview about whether CBT and GET can reverse CFS/return people to full functioning e.g.

http://forums.phoenixrising.me/show...-letters-that-were-not-accepted-by-the-Lancet

White and colleagues sought to test graded exercise therapy (GET) and
cognitive behaviour therapy (CBT), two posited approaches for Chronic
Fatigue Syndrome (CFS).1

In both GET and CBT, "[p]articipants are encouraged to see symptoms as
temporary and reversible".2 This is re-iterated in the accompanying
editorial, "oth graded exercise therapy and cognitive behavioural therapy
assume that recovery from chronic fatigue syndrome is possible".3 The
secondary outcome measure "recovery" would have helped us assess if such an
assumption is valid;4 we are not given figures for this but it is apparent
from the other data that the numbers achieving "recovery" were small.1

The results for the only objective outcome measure, the 6 minute walking
distance (6MWD), were similarly unimpressive.1 At the end of therapy, CBT
had led to no improvement over the control group. GET participants did
perform slightly better than the controls (+35.3 metres), but a 6MWD mean
(SD) of 379 (100) metres in a group with a mean age of 40 is still well
below the 631 (83) metres obtained previously by elderly adults (mean age:
65).5

These results come from a trial lasting 12 months, allowing plenty of time
for recovery to occur if the model was accurate.

Scientific experiments are about testing out hypotheses; far from the
strengthening the evidence for the theory that the effects of CFS are
temporary and can be reversed with either CBT or GET, the trial suggests
this model does not hold for most patients.

References:
1. White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; on behalf of the
PACE trial group. Protocol for the PACE trial: a randomised controlled trial
of adaptive pacing, cognitive behaviour therapy, and graded exercise, as
supplements to standardised specialist medical care versus standardised
specialist medical care alone for patients with the chronic fatigue
syndrome/myalgic encephalomyelitis or encephalopathy. BioMed Cent Neurol
2007;7:6.

2. Bavinton J, Darbishire L, White PD - on behalf of the PACE trial
management group. Graded Exercise Therapy for CFS/ME (Therapist manual):
http://www.pacetrial.org/docs/get-therapist-manual.pdf (Last Accessed: 4th
March, 2011)

3. Bleijenberg G, Knoop H. Chronic fatigue syndrome: where to PACE from
here? Lancet. 2011;377:786-8

4. White PD, Goldsmith KA, Johnson AL, and the PACE trial management group.
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded
exercise therapy, and specialist medical care for chronic fatigue syndrome
(PACE): a randomised trial. Lancet. 2011;377:823-36

5. Troosters T, Gosselink R, Decramer M. Six minute walking distance in
healthy elderly subjects. Eur Respir J. 1999 Aug;14(2):270-4. Eur Respir J.
1999;14:270-4.

-------
White and colleagues tested graded exercise therapy (GET) and cognitive behaviour therapy (CBT) as treatments for Chronic Fatigue Syndrome (CFS)1 which are both based on the biopsychosocial model of CFS. CBT assumes that fear of engaging in activity and avoidance of activity are responsible for perpetuating the participants symptoms and disability. 1. GET is based on the theory that CFS is perpetuated by deconditioning and avoidance of activity. 1.

Peter White, along with the authors of the editorial, Gijs Bleijenberg and Hans Knoop, have argued previously that a full recovery from CFS is possible following CBT. 2,3

Participants receiving CBT and GET were encouraged to see symptoms as temporary and reversible, with GET, for example, aiming to return a patient to normal health and ability. 4

The minimal mean difference recorded for participants in the GET and CBT groups, in comparison with the SMC group, and the setting of the normal range to a level which overlaps the eligibility for entry into the trial, demonstrate that the both GET and CBT were minimally effective and that the biopsychosocial model of CFS is without foundation.

The number of participants who recovered following treatment was recorded but not reported. 1,5 This is a significant omission because without these data it is not possible to fully evaluate the reported effectiveness of the GET and CBT , and the biopsychosocial model that underpins them both cannot be validated. 4,5

References:

1. White PD, Goldsmith KA, Johnson AL, and the PACE trial management group. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet. 2011;377:823-36

2. Knoop H, Bleijenberg G, Gielissen MF, van der Meer JW, White PD. Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? Psychother Psychosom. 2007;76(3):171-6.

3. Bleijenberg G, Knoop H. Chronic fatigue syndrome: where to PACE from here? Lancet. 2011;377:786-8

4. Bavinton J, Darbishire L, White PD - on behalf of the PACE trial management group. Graded Exercise Therapy for CFS/ME (Therapist manual): http://www.pacetrial.org/docs/get-therapist-manual.pdf (Last Accessed: 4th March, 2011)

5. White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; on behalf of the PACE trial group. Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BioMed Cent Neurol 2007;7:6.
 

Dolphin

Senior Member
Messages
17,567
I agree. But what he wants the money for, researching the mechanism of improvement, could be very good for us down the road. That kind of research is bound to show the physiological root of the problem. And could possibly be the start of a sea change in how ME is viewed in the UK. It seemed to me most of the slanted dialogue came from the Lancet guy, not the scientist.
The one or more papers of mechanisms on this trial are going to be about other questionnaire results and the like. They're not going to be much use at all at getting at the physiological root of the problem.
 

Dolphin

Senior Member
Messages
17,567
I still think the dutch actometer data should have been a potential killer blow, and it's the stand-out thing about PACE, for me, the way they failed to do that follow-up. Consider: the Dutch results seemed to show that when patients filled in questionnaires to the effect that "I am more active after the therapy", the actometer data showed this was not true. If PACE had confirmed this - which it easily could have done if the actometers had been retained after the study - that would have undermined the entire evidence base for questionnaire-based assessments of success. That wouldn't just affect CBT for ME/CFS, but potentially make all questionnaire-based assessments unsafe. It could perhaps have undermined CBT as a whole and a lot more besides.

No wonder they decided halfway through their study to change the protocol and not apply this test!

But in doing so they exposed their own manipulation of methodology in order to fit the results they want to demonstrate. And combined with the timing of the release of the dutch data just before the decision to abandon actomers (I think...I'd like to see all that worked up as a full chronology), that swings the way it looks from confirmation bias to conscious fraud, for me - not, perhaps, legally speaking, but in practice "this decision was for the participants own good because it wasn't fair to ask them to wear actometers again" strains credibility to breaking point.
The Wiborg study was published in 2010. The pedometers were dropped some time between 2001 and around 2003. However, the pedometer data for Prins et al (2001) was released around 2002 and the data was presumably available/collected years earlier. Peter White had dealings with Gijs Bleijenberg on the CDC committee (for example) in the early 2000s. There was also the Friedberg case study around then which suggested actometers may show no increase.

Three rejected letters mentioned the Wiborg et al. (2010) data http://forums.phoenixrising.me/show...-letters-that-were-not-accepted-by-the-Lancet :
Cognitive behaviour therapy/graded exercise therapy is not an effective treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

According to White et al. (1) "either cognitive behaviour therapy (CBT) or graded exercise therapy (GET), when added to specialist medical care (SMC), are effective treatments for chronic fatigue syndrome (CFS)".

The size of this effect is however very moderate, while 60% reported they did not see a positive result in Global Impression of Health Scale benefit.

The Work and Social Adjustment scale indicated the average CBT/GET patient was still at the borderline of being 'very severely impaired'.

The conclusion is that these treatments cannot be considered to be effective (1) or curative (2).

More importantly, due to the selection criteria, the participants cannot be considered to be CFS patients, e.g. 47% met criteria for psychiatric disorders, while the two subjective measures fatigue and physical function are largely insufficient to establish recovery: cut-off scores on these measures do not correspond with a CFS diagnosis.

Moreover, an improvement in "fatigue" is not reflected by a significant objective improvement, e.g. in physical activity (3).

When looking at the only objective measure (1), i.e., meters walked in 6 minutes (CBT: 354; GET: 379; compared to 349 for SMC after treatment), CBT and GET hardly qualify as "moderately effective".

As recently has been confirmed (4), CBT and GET are not effective and even potentially harmful for many ME/CFS patients (5).

According to (1) non-serious adverse events for CBT (89%) and GET (93%) are very common.

Therefore the claim that "CBT and GET can safely be added to SMC" (1) cannot be substantiated.



References:
1. White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet 2011 Feb 17. doi:10.1016/S0140-6736(11)60096-2.
2. Wessely, S. Chronic fatigue syndrome - trials and tribulations. JAMA 2001; 286; 1378-9. doi: 10.1001/jama.286.11.1378.
3. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med 2010; 40: 1-7. doi:
10.1007/s10067-009-1339-0
.
4. Nez M, Fernndez-Sol J, Nuez E, Fernndez-Huerta JM, Gods-Sieso T, Gomez-Gil E. Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. Clin Rheumatol 2011 Jan 15. doi: 10.1007/s10067-010-1677-y.
5. Twisk FNM, Maes M. A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients. Neuro Endocrinol Lett 2009; 30: 284-99.

The results of the PACE Trial contrast with another Chronic Fatigue Syndrome (CFS)
study that tested four non-pharmacological therapies.1,2 The latter study found that,
across 25 outcome measures, an intervention involving a form of pacing obtained more
significant improvements than a Cognitive Behaviour Therapy (CBT) program (similar to
that assessed in the PACE Trial), an exercise program and a relaxation/stretching
program.2 If some of those measures had been used in the PACE Trial, the results might
have been different.

Objective outcome measures are preferable due to the potential for response bias, and
the protocol mentioned several but only one, the six-minute walking distance, was
reported.3 Graded Exercise Therapy (GET) performed better on this test than the other
interventions which all had similar results.1 However, even for GET, the mean of 379m is
unimpressive compared to reference values of approximately 600m for healthy men and
women aged 45 years; the improvement could even theoretically be due to a learning
effect (given GETs content, participants would have had more experience walking
continuously than, say, the Adaptive Pacing Therapy (APT) group) and possibly a greater
willingness on the part of GET participants (compared to those using APT) to push
themselves for the test.1,3,4

It would have been interesting if actometer data had been collected: a review of three CBT
studies found that despite significant subjectively-reported improvements in fatigue (and
indeed functioning), the objectively-measured total activity levels were only marginally
different to baseline scores, with no difference being recorded compared to the control
group.5

References:

1. White PD, Goldsmith KA, Johnson AL, et al., on behalf of the PACE trial management group.
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and
specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011;
published online Feb 18. DOI:10.1016/S0140-6736(11)60096-2.

2. Jason LA, Torres-Harding S, Friedberg F, et al. Non-pharmacologic interventions for CFS: a
randomized trial. J Clin Psych Med Settings. 2007; 14:275-296.

3. White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; on behalf of the PACE trial group.
Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour
therapy, and graded exercise, as supplements to standardised specialist medical care versus
standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic
encephalomyelitis or encephalopathy. BioMed Cent Neurol 2007; 7: 6.

4. Enright PL, Sherrill DL. Reference equations for the six-minute walk in healthy adults. Am J
Respir Crit Care Med.;158(5 Pt 1):1384-7.

5. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour
therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity.
Psychol Med. 2010; 40:1281-1287.

As the largest study into the efficacy of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) for Chronic Fatigue Syndrome (CFS) yet carried out, it is disappointing to see that White et al. decided it would be too great a burden to ask patients to use actometers at the end of the trial [1,2]. Actometers, which were used to assess patients at the start and were originally planned as an outcome measure, may have provided information which could help us understand the data from previous studies indicating that psychosocial treatments for CFS are able to improve self-rating questionnaire scores, but do not allow an increase in sustained activity levels [3].


There is a danger that if such interventions alter the way in which patients express their disability levels without necessarily improving their level of disability, then researchers could develop and promote a misleading understanding of these therapies usefulness.


In their commentary Bleijenberg and Knoop point out that both CBT and GET encourage patients to presume they can recover [4]. While this may be a healthy cognition for patients to have, we should not allow that to affect our examination of the evidence: in the Pace trial protocol recovery required a SF-36 physical function score of 85 or above, and a score of under 65 was part of the inclusion criteria for patients suffering from disabling fatigue that required treatment; by the time of the Pace trials press conference those scoring just 60 were being classed as back to normal [5].


1. White PD, Goldsmith KA, Johnson AL, et al, on behalf of the PACE trial management group. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011; published online Feb 18. DOI:10.1016/S0140-6736(11)60096-2.


2. White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; on behalf of the PACE trial group. Response to comments on Protocol for the PACE trial http://www.biomedcentral.com/1471-2377/7/6/comments Accessed February 27, 2011


3. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychological Medicine. 2010 Aug;40(8):1281-7.

4. Knoop H, Bleijenberg G. Chronic fatigue syndrome: where to PACE from here? Lancet 2011; published online Feb 18. DOI:10.1016/S0140-6736(11)60172-4 1


5. White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; on behalf of the PACE trial group. Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BioMed Cent Neurol 2007; 7: 6.
 

Snow Leopard

Hibernating
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When I read White & Chalder's truly pathetic 'justification' for not using actometers at outcome, I knew PACE was not going to be rigourous or fair, and I lost what little faith, respect, and patience I might have had left for that side of the debate.

I think we need to leverage (a) the importance of actometer results and (b) long term followups (eg 2 or even 5 years after the conclusion of the intervention).

Since baseline data was gathered, there is no scientific reason why this cannot be done.

I suggest this is something to push for.
 
Messages
5,238
Location
Sofa, UK
I think we need to leverage (a) the importance of actometer results and (b) long term followups (eg 2 or even 5 years after the conclusion of the intervention).

Since baseline data was gathered, there is no scientific reason why this cannot be done.

I suggest this is something to push for.
Crucial point. I have thought about this quite a bit, the idea keeps coming back. The dropping of actometers seems like the most blatant thing about PACE to me: anybody can see how dodgy that is without having to know any of the history or detail: it's pretty much a smoking gun for me. And if this could be followed up asap, it has the potential to demonstrate that the questionnaire results are all illusory - that's why it's too dangerous for this experiment to be completed and obviously that's why it wasn't done. And at any time it could be followed up; even later on it might at least show that any gains were not sustained, and it could even show long-term harm from the approach taken. Crucial.
 

Daisymay

Senior Member
Messages
754
I agree that failrue to use actometers is so very telling, but surely ignoring ALL the biomedical research is THE pivotal thing in PACE, all else follows on from that, when you see the biomedical evidence you see their theory and assumption that we are wrongly thinking we are ill etc is scientifically invalid hence the premise of the whole trial is invalid end of story! By ignoring the biomedical evidence they are in breach of the Declaration of Helsinki and they are in breach of basic scientific principles of research.

I absolutely agree with all the excellent analysis of the PACE trial that has gone on here and on other lists to show what a scientific fraud it is BUT the primary issue is they ignored all the biomedical evidence because it invalidates their theory of how the disese is perpetuated and the whole trial.

If their theory were to be correct then wrong illness beliefs and fear must be able to cause all the biomedical abnormalities, the 738 chemicals found in the CSF, all the immunological findings, all the neurological findings, all the virological findings etc etc etc and they would have to be able to prove that CBT/GET corrected these findings. No wonder they ignore all the biomedical evidence!

Somehow we need to inform the medical profession of all the biomedical evidence and then the psychs rule will be in crisis. That's the crux.
 
Messages
5,238
Location
Sofa, UK
Excellent analysis Daisymay! The actometer-dropping is just the latest extension of the tip of the iceberg of ways to ignore biomedical evidence - I just think it may be just about the least subtle example yet. Maybe the way that the Lancet's weighing in to ignore all scientific critique of PACE is more blatant still though...

As to informing a medical profession that (in the UK) largely reads nothing but the Lancet...hmm...we can continue consolidating that biomedical information on the internet, and keep taking links and printouts in to doctors...which is a continuing job and not an easy one...especially if they've obeyed the instructions to ignore our 'obsessing' about medical and health matters...

But really, ultimately, I'm not sure that informing doctors will work as a strategy because they don't have time for all that really, and treatments will be their major focus, not (for most) a long and complex study of the underlying science, and not a load of disputed tests which they can't easily access anyway - though these are the practical focus for us as individuals. And apart from that, I've had enough good and frank conversations with medical practitioners frustrated by the increasing dogmatism over 'evidence-based' medicine and open-minded to what I'm saying, to realise that many of them feel almost as powerless as we do in this situation. So for the wider political struggle, perhaps we really need to reach scientists with the biomedical evidence...and on all fronts, all we can do is just keep plugging away...
 

floydguy

Senior Member
Messages
650
And apart from that, I've had enough good and frank conversations with medical practitioners frustrated by the increasing dogmatism over 'evidence-based' medicine and open-minded to what I'm saying, to realise that many of them feel almost as powerless as we do in this situation.

They should not like evidence-based medicine, if only for their own self-interest. Evidence-based medicine is really about adopting the guidelines and demands of the insurance industry (or I suppose NHS in the UK). If they fully succeed then doctors won't be necessary or they will only be needed to sign the prescription pad or the lab order. Hmm maybe they've already succeeded :(
 

Dolphin

Senior Member
Messages
17,567
I agree that failrue to use actometers is so very telling, but surely ignoring ALL the biomedical research is THE pivotal thing in PACE, all else follows on from that, when you see the biomedical evidence you see their theory and assumption that we are wrongly thinking we are ill etc is scientifically invalid hence the premise of the whole trial is invalid end of story! By ignoring the biomedical evidence they are in breach of the Declaration of Helsinki and they are in breach of basic scientific principles of research.

I absolutely agree with all the excellent analysis of the PACE trial that has gone on here and on other lists to show what a scientific fraud it is BUT the primary issue is they ignored all the biomedical evidence because it invalidates their theory of how the disese is perpetuated and the whole trial.

If their theory were to be correct then wrong illness beliefs and fear must be able to cause all the biomedical abnormalities, the 738 chemicals found in the CSF, all the immunological findings, all the neurological findings, all the virological findings etc etc etc and they would have to be able to prove that CBT/GET corrected these findings. No wonder they ignore all the biomedical evidence!

Somehow we need to inform the medical profession of all the biomedical evidence and then the psychs rule will be in crisis. That's the crux.
If they had used actometers and people got up to a normal level of activity (on average - none of this taking an individual and misusing stats like that), that would have been interesting. Rehabilitation can work to an extent in some conditions (but it doesn't mean that all the problems are solved). I think they would have found that it really doesn't work that well in ME.

An experiment couldn't necessarily test all hypotheses; but if it focuses on one or a few, it should try to do them well esp. if it costs 5m. It didn't (do it well) here.
 

Angela Kennedy

Senior Member
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Location
Essex, UK
If they had used actometers and people got up to a normal level of activity (on average - none of this taking an individual and misusing stats like that), that would have been interesting. Rehabilitation can work to an extent in some conditions (but it doesn't mean that all the problems are solved). I think they would have found that it really doesn't work that well in ME.

An experiment couldn't necessarily test all hypotheses; but if it focuses on one or a few, it should try to do them well esp. if it costs 5m. It didn't (do it well) here.


Mmn. So they would have needed to actually have ME/CFS type patients selected in, and used actometers. And trialled the correct form of 'pacing'. My, that WOULD have been an interesting trial!

(Sorry about the sarcasm there. Obviously, that's all what should have been done in the first place...)
 

Angela Kennedy

Senior Member
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Essex, UK
Mmn. So they would have needed to actually have ME/CFS type patients selected in, and used actometers. And trialled the correct form of 'pacing'. My, that WOULD have been an interesting trial!

(Sorry about the sarcasm there. Obviously, that's all what should have been done in the first place...)

And avoided all the other discrepancies and ethical pitfalls as detailed in Hooper, for example.
 

Dolphin

Senior Member
Messages
17,567
Mmn. So they would have needed to actually have ME/CFS type patients selected in, and used actometers. And trialled the correct form of 'pacing'. My, that WOULD have been an interesting trial!

(Sorry about the sarcasm there. Obviously, that's all what should have been done in the first place...)
The diagnosis point is important. However, even if they had used the "wrong" form of pacing, data from the CBT and GET legs could have been of some value. But just basing it virtually all on questionnaires as they did, it was not too far from flushing 5m down the toilet.
 

oceanblue

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Effectiveness of CBT in other illnesses

A bit late, but this might throw some more light on the debate about the general usefulness of CBT. I'ts a review of meta-analyses and finds that CBT is pretty helpful for some treatments eg the ones it was developed for eg depression and generalised anxiety disorder and less effective in other areas.

The empirical status of cognitive-behavioral therapy: a review of meta-analyses.

This review summarizes the current meta-analysis literature on treatment outcomes of CBT for a wide range of psychiatric disorders. A search of the literature resulted in a total of 16 methodologically rigorous meta-analyses. Our review focuses on effect sizes that contrast outcomes for CBT with outcomes for various control groups for each disorder, which provides an overview of the effectiveness of cognitive therapy as quantified by meta-analysis. Large effect sizes were found for CBT for unipolar depression, generalized anxiety disorder, panic disorder with or without agoraphobia, social phobia, posttraumatic stress disorder, and childhood depressive and anxiety disorders. Effect sizes for CBT of marital distress, anger, childhood somatic disorders, and chronic pain were in the moderate range. CBT was somewhat superior to antidepressants in the treatment of adult depression. CBT was equally effective as behavior therapy in the treatment of adult depression and obsessive-compulsive disorder. Large uncontrolled effect sizes were found for bulimia nervosa and schizophrenia. The 16 meta-analyses we reviewed support the efficacy of CBT for many disorders. While limitations of the meta-analytic approach need to be considered in interpreting the results of this review, our findings are consistent with other review methodologies that also provide support for the efficacy CBT.
When looking at this area I found a lot of the criticisms mentioned on this thread that CBT is the pre-eminent psychological therapy because it's the one most researched, rather than the best. There doesn't seem to be any evidence CBT is better than other therapies (and some evidence that it's no different).
 
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I've also seen criticism for CBT for depression/anxiety that's similar to some concerns we have with Pace:

That the questionnaires used to measure the success of CBT measure those patient's responses which are most easily effected by CBT, but do not effectively capture the problems of 'depression' or 'anxiety'. I think that CBT is likely to be helpful for many with these conditions, but it's critics raise a lot of worthwhile points too - both in terms of efficacy of competently done CBT, and the difficulties of ensuring CBT is performed competently.
 

Hope123

Senior Member
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1,266
In the US at least and probably in other countries, CBT is promoted partly because it is less expensive. Since CBT outcomes are "measurable", insurance companies have a marker by which they "know" when treatment is no longer needed and can stop paying for it. It's possible that other types of therapies are more effective or less costly but without people doing studies on them with some type of measurable appropriate outcome, health insurance companies don't want to pay for it and thus there is less push for those treatments.

A stereotypical example of this would be the person who goes to psychotherapy for years and doesn't get any better necessairily. Now, some people might actually benefit from years of therapy but there might be other cases where the patient/therapist extends treatment for reasons of psychological dependence/ reimbursement (respectively).
 

oceanblue

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I've also seen criticism for CBT for depression/anxiety that's similar to some concerns we have with Pace:

That the questionnaires used to measure the success of CBT measure those patient's responses which are most easily effected by CBT, but do not effectively capture the problems of 'depression' or 'anxiety'. I think that CBT is likely to be helpful for many with these conditions, but it's critics raise a lot of worthwhile points too - both in terms of efficacy of competently done CBT, and the difficulties of ensuring CBT is performed competently.
That's interesting, though obviously it's difficult to assess psychological problems any other way than subjectively (as opposed to CFS where objective measures are feasible and desirable). Do you have any links to these questionnaire bias problems of not measuring the relevant outcome? ta.