Keith Laws 'Has cognitive behavioural therapy for psychosis been oversold?'

biophile

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Some of the evidence presented by Laws against CBT for schizophrenia appears to be more sobering than the evidence that exists for CBT for CFS, but there are interesting implications of the types of evidence he considers. For example, he goes into the effects of researcher allegiance and (the lack of) blinding, which remove the small or marginal effects that the evidence of CBT apparently had for schizophrenia. These issues have not been explored in CBT for CFS, where most studies are done by staunch proponents of the therapies and almost all are non-blinded.

Re "Perhaps the most remarkable fact is that over 75% of published studies document no significant reductions in positive symptoms, negative symptoms or in the key symptom of hallucinations."

In contrast to the above, most CBT trials for CFS do show statistically significant improvements in self-reported fatigue. Not sure the same applies to self-reported physical functioning, several do but the last Cochrane review (which needs updating) did not show any obvious effect, and neither did the latest NHS data on CBT for CFS. The PACE Trial did, but also showed that the effects on pain and other self-reported symptoms are minimal at best. With the more objective measures, the overall evidence suggests no significant improvements in physical activity levels, 6-minute walking test distances, employment hours, welfare dependence, insurance payouts, or total service use.

CBT (and GET) are based on the controversial hypothesis that the symptoms and disability of CFS, regardless of initial triggers, are primarily perpetuated by maladaptive beliefs about the illness, fear avoidance of activities, hypervigilance to normal bodily sensations, and the physiological consequences of deconditioning and circadian rhythm disturbance, etc.

CBT for CFS appears to modestly help a minority, so how has it been oversold?

1) Provides patients with an unproven "explanation" for their symptoms, which fails to account for the abnormal biological responses to exercise which cannot be explained by deconditioning and are not generally found in deconditioned controls.

2) It is commonly claimed by proponents to substantially benefit the majority of patients e.g. 70%, but the net clinical response rates (experiment rate minus control rate) are more like 15% (Cochrane, PACE Trial) so a NNT of about 7 for a modest improvement. The 'recovery' rates from the PACE Trial are misleadingly exaggerated, since the thresholds for normal fatigue and normal physical function overlapped with trial criteria for severe chronic disabling fatigue. On closer inspection, the additional criteria for recovery may indicate an improvement but certainly do not guarantee a 'recovery' in the normal sense of the word. Erroneous hype about 'recovery' in the Lancet was ruled misleading by the Press Complaints Commission.

3) It is usually assumed that because CBT/GET aims to increase activity levels and function, then it must occur during therapy. But the more objective measures do not support these assumed improvements. There is no good evidence of genuine recoveries that have been road tested with the normal activities of daily life.

4) Similarly, there have been a lack of consideration for whether the effects are genuine improvements in health or the result of the placebo response and changes to 'questionnaire-answering behaviour' that may arise due to encouraging patients to reinterpret symptoms, believe their illness is not as serious as they thought, and that they should focus less on symptoms and limitations. The Cochrane 2000 review suggests that CBT is not superior to oral placebo in a trial which also tested biomedical treatment, and the Cochrane 2008 review suggests that CBT is not superior to waiting list control.

5) It is supposed to be safe, but patient surveys suggest otherwise, although these results are dismissed as being the selective informal results of improperly applied CBT/GET in the real world. For about 20 years this safety was presumed in the literature based on group average scores and not from recording adverse effects on an individual level. The PACE Trial was supposed to resolve this concern, but the definition of adverse effects were generally much stricter than for the post-hoc definitions of improvement, and there is unpublished data. The issue of safety is also tied up with that of objective outcome measures: CBT/GET appears to be generally 'safe' as long as patients are not pushed beyond their limits, but contrary to what we are told by proponents of the therapies, the evidence suggests that CBT/GET do not overcome these limits.

6) People who dispute the rationale and claims of effectiveness of CBT (and GET), or challenge questionable post-hoc protocol changes in 'definitive' trials e.g. PACE, are often dismissed as anti-psychiatry extremists who don't understand the mind-body connection, fear the stigma of mental illness, ideologically resist suggestions that CFS is not biomedical, etc. This dismissal has consequences for scientific understanding and for patients who fail to improve. In the FINE Trial which tested similar therapies based on a similar rationale, patients were often regarded by the nurses as the bastards who didn't want to get better, which is unsurprising given the non-representative treatment model which they were trained to deliver.
 
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Roy S

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6) People who dispute the rationale and claims of effectiveness of CBT (and GET), or challenge questionable post-hoc protocol changes in large 'definitive' trials e.g. PACE Trial, are often dismissed as anti-psychiatry extremists who do not understand the mind-body connection or ideologically resist suggestions that CFS is not biomedical, etc. This dismissal has consequences for scientific understanding and for patients who fail to improve. In the FINE Trial which tested similar therapies based on a similar rationale, patients were often regarded by the nurses as the bastards who didn't want to get better, which is unsurprising given the nonrepresentative treatment model which they were trained to deliver.
.


Agreed, and I wonder if any other CBT treatment group is subjected to anything like the ME/"CFS" patient community has been, in the UK especially. The following post is a prime example.

http://forums.phoenixrising.me/inde...cle-in-sunday-times.23050/page-10#post-360792
 

Esther12

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@biophile re comparing the case of CBT being oversold for schizophrenia vs CFS:

It is difficult to compare, and they seem quite different. I'm not aware of CFS trials that have used blinded assessment - but also, I'm not sure how great that would be at reducing the danger of bias. It's really difficult for one person to judge the 'fatigue' of another. Things like employment and actometer data would seem to me to be far more valuable.

So a difficulty with winning a 'CBT has been oversold for CFS' debate would be that most CBT trials for CFS will show a positive impact on self-report symptoms. A reason this debate would be easy for us: it's been SO oversold.

Bits like this that I posted yesterday:

The therapy is intensive, makes great demands on the patient and has a success rate of around 70%. Success means that the patient is restored to a more or less normal level of functioning.

A lot of the spin around recovery rates/cure and PACE. From what I've been able to see, those over-selling CBT for schizophrenia are less extravagant in their claims.

I think that we'd have a really easy time picking through the evidence, showing how the critieria was changed post-hoc for dodgy reasons... admittedly, we'd still lose the debate when up against a touching anecdote about a patient who'd rebuilt their life and place in society after forming a special bond of understanding with their therapist - but not in a way that mattered!
 

Esther12

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Keith Laws actually tweeted about this thread yesterday... led on to lots of other tweets between a couple of patients and @psychiatrysho (who did the storify). Am I now a twitter celebrity?



  1. Keith R Laws ‏@Keith_Laws Apr 6
    Interesting responses to the @MaudsleyDebates on CBT for psychosis from Chronic fatigue Syndrome forum users http://forums.phoenixrising.me/index.php?threads/keith-laws-has-cognitive-behavioural-therapy-for-psychosis-been-oversold.29385/…





  2. Alex Langford ‏@PsychiatrySHO Apr 6
    @Keith_Laws @MaudsleyDebates the enemies of your enemies are your friends





  3. Keith R Laws ‏@Keith_Laws Apr 6
    @PsychiatrySHO @MaudsleyDebates Interesting & different - CFS folk rally against it as service users - folk with sz are silent by contrast






  4. Alex Langford ‏@PsychiatrySHO Apr 6
    @Keith_Laws @MaudsleyDebates ppl a scz perhaps less able to rally - ironic tho as there's fair evidence it helps for cfs

Funny how for schizophrenia Langford seemed to recognise the danger for bias affecting results, but for CFS seems to take results as they're presented by researchers. He did say he's not an expert in CFS, and I think that this is a really common approach, even for people concerned about spin in an area of research they're familiar with.

The fact that there is so little solid evidence to go on with CFS, and you can get confusion from patients, seems to lead people to just wanting to trust those claiming to be experts in the area.

Also, re "the enemies of your enemies are your friends" - it's not like I'm a keen fan of those selling dodgy 'biological' treatments for CFS! I just want people to restrict the claims they make to those that are supported by good evidence, and when that is not available, to be clear about that whatever treatment they are promoting is experimental and lacking a good evidence base.

I think I'd suck at discussing CFS on twitter.
 

Esther12

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We got another tweet from Laws... https://twitter.com/Keith_Laws/status/453290416188948480

In case he gets drawn back again:

@keith Laws: Any way we could encourage you to help release the protocol defined outcomes for the PACE trial?

Requests from patients and patient groups get knocked back, eg: https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po

However the trial's PI has kind-of indicated support for the AllTrials campaign, stating that he just wants to share data with "bona fide researchers".

http://www.bmj.com/content/346/bmj.f2961/rr/645269

There were changes to how the primary outcome measures were presented, but more important (imo) is the refusal to release results for their protocol defined criteria for recovery. The post-hoc criteria is so watered down as to be useless and misleading. I think that patients are often able to be suitably cynical about the value of treatments which have been shown to lead to minor improvements in questionnaire scores in unblinded trials, but there's also such a desire for real recovery that people are willing to go through almost anything if they're told that there's a good chance it will lead to them recovering. It's really important that people have access to solid data on recovery rates, and at the moment we're being screwed.

Even for those with no interest in ME/CFS treatments, I think that an interesting paper could be done using PACE as a case study for how deviations from a trial's protocol can affect how results are viewed and understood.

Any 'bona fide' researchers from twitter want to help patients get access to more meaningful results from a large publicly funded trial? Dip your toes into the dangerous ME/CFS waters? We gave you brill insights into the views of service users (kind of)... go on!

If anyone wants to sign up here and start a private conversation then I'd be whatever help I could be.
 

biophile

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This debate is still going on.

James Coyne and Richard Bentall (FINE Trial) duking it out in the comments section of this blog:

http://discursiveoftunbridgewells.blogspot.co.uk/2014/04/a-national-scandal-psychological.html

Here are two brief snippets:

Coyne: "Sorry, Richard Bentall, do you uncritically accept what you read in Lancet?"

Bentall: "Doh! It's you who doesn't understand a very basic aspect of RCT design."

Also see https://twitter.com/Keith_Laws

and https://twitter.com/search?q=Keith_Laws RichardBentall&src=typd

It appears that Bentall and Laws have history as well e.g. (comments sections):

http://keithsneuroblog.blogspot.co.uk/2013/04/the-dream-machine-cut-ups-cut-ins-cut.html

http://saraheknowles.wordpress.com/2014/02/14/find-the-gap

Laws posted an interesting article about the battle between CBTp proponents and critics:

The Farcial Arts: Tales of Science, Boxing, & Decay
http://keithsneuroblog.blogspot.com.au/2014/02/the-farcial-arts-tales-of-science.html

Here is an excerpt which may interest those following CBT for CFS:

Is 'Normal Science' all about fixed bouts?

We should acknowledge that some bouts are 'fixed', with some judges being biased toward one of the opponents. Again in science, this may happen in contests between an established intervention (e.g. CBT for psychosis, anti-psychotic medication etc) and those arguing that the intervention is not so convincing. Judges are quite likely to be advocates of the traditional therapy, or at least the status quo - this is a part of Kuhnian normal science - most people have trained and work within the paradigm, ignoring the problems until they escalate, finally leading to replacement (paradigm shift). These changes do not occur from knock-out blows but from a war of attrition, with researchers hunkered down in the trenches possibly advancing and retreating yards over years. What this means is that its hard to defeat an established opponent - unseating an aging champion requires much greater effort than simply protecting that champion.

I'm not familiar with CBT for schizophrenia, but I'm glad there are professionals looking into it. When it comes to CFS, it appears that all critique is left up to patients and advocates, who are dismissed as extremists who allegedly only criticize CBT because we fear the stigma of mental illness, don't like anything that suggests we don't have a physical illness, do not understand the mind-body connection, support outdated Cartesian dualism, among other strawmen and red herrings. Not saying that no individuals ever express such beliefs, just that these are poor reasons for dismissing criticisms of CBT for CFS. Of course, for various reasons, some patients and advocates have also expressed obvious anger and frustration during such discussions, usually borne from years of suffering an illness while being ridiculed and dismissed, and seeing their concerns continue to fall on deaf ears, while CBT/GET related spin generally allows to go unchallenged at their expense.
 
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Sean

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And another excerpt:

Of course, the nature of a paradigm in crisis is that ad hoc defences emerge inluding examples of what Lakatos calls 'monster barring'. To take an example, CBT for psychosis advocates have seen it as applicable to all people with a schizophrenia diagnosis and when this is found wanting, the new position becomes: schizophrenia is heterogeneous and we need to determine for whom it works – monster barring protects the hypothesis against counter-examples by making exceptions (not tested and evidenced of course). This could go on indefinitely of course: CBT must be delivered by an expert with x years training; CBT works when used in the clinic; CBT works for those individuals rated suitable for CBT ...ad infinitum...
 

A.B.

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It seems that CBT is really creative interpretation and application of the placebo effect.

Based on this, there should be no condition where CBT fails to be helpful, as long as its efficacy is measured subjectively and is never compared to a placebo.
 

Esther12

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This debate is still going on.

James Coyne and Richard Bentall (FINE Trial) duking it out in the comments section of this blog:

http://discursiveoftunbridgewells.blogspot.co.uk/2014/04/a-national-scandal-psychological.html

Here are two brief snippets:

Coyne: "Sorry, Richard Bentall, do you uncritically accept what you read in Lancet?"

Bentall: "Doh! It's you who doesn't understand a very basic aspect of RCT design."

Bentall: Treatment as usual (TAU) means that patients in the control group could have any treatment they wanted that their clinician was willing to make available.

So TAU can mean a patient is isolated and not able to have access to basic practical support that they do want? With that as a control patients can end up with a choice between nothing or a serious psychological intervention like CBT. Equally - TAU could include OT support, drop in centres, etc. I was just speaking to someone who worked in MH about this CBT for psychosis stuff, and they were saying how they felt that their drop in centre was the most useful thing that they did for patients: giving people somewhere to come for supportive chats, help with benefits, etc - apparently these sorts of services are being cut though.

Recording of the Maudsely debate is now on-line: http://www.kcl.ac.uk/iop/news/debates/index.aspx

I've watched most of it now, but will not post up my thoughts til I'm done. I'm finding it is interesting to look at some similar problems that face CFS, but as an outsider, and I do sometimes find myself being drawn to an attitude that I think does a lot of harm with CFS: 'This is a serious problem and we must be able to do something to help'.
 

Esther12

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Thoughts/summary on going through. I ended up doing more of a summary than I planned as the audio wasn't great (not terrible either), and there's a lot of time spent on audience stuff, so I thought that lots of people might be interested in knowing what was said but find going through the video difficult. I've now added in links to a few of the papers mentioned too. I was doing less of a summary at first.



The reassuring and self-congratulatory intro is a bit irritating (I often find that the tone of these things is) and seems strangely condescending about dermatologists not having debates like this- maybe it's because they're better at limiting themselves to claims supported by good evidence? Getting to the truth about whether treatments have been oversold, especially ones as significant as CBT, isn't a fun game!

Robin Murray is the moderator. He was editor of the journal that published the PACE 'recovery' paper which abandoned the protocol defined recovery criteria and replaced it with one that was so watered down that patients could be counted as 'recovered' even if they had higher levels of reported fatigue or disability than when they started the trial. The journal also refused to publish letters which pointed out that there was a clear factual error in the justification for abandoning the original recovery criteria (an error which has still gone uncorrected), and I heard that Murray was originally planning to publish an editorial slagging off people for criticising the paper and linking this to 'ME patient harassment' stuff. This CBT for schizophrenia debate replaced a planned one on 'stigma' - ho ho ho.


McKenna: Starts off without the irritating tone London establishment debates! Mentions an RCT which seemed to have important results missing. He has a rapid response here: http://www.bmj.com/content/317/7154/303?tab=responses It seems that they reported a significant improvement for CBT, but did not say whether there was as significant difference over the supportive listening control group. Then mentions this study http://www.ncbi.nlm.nih.gov/pubmed/10665619 which claimed positive effect at end of treatment that was not supported by data (although there was a positive effect at 9 months). Says things got 'considerably darker' with the NICE guidelines. McKenna said that NICE said all patients 'must' have CBT, but no quote for this. We've seen with CFS though how patients often end up being pushed/manipulated into recommended treatments, but I thought that he probably went too far there. He pointed out that NICE carried out 130 meta-analyses on 31 studies, and many contained only 1 or 2 studies. For most of these, CBT was not found to be significantly effective. Says that while NICE is meant to be cool headed and objective, it's work here is a case study in selective reporting. McKenna emphasises the need to look closely at the quality of studies, and possible sources of bias. Goes on to say that it's impossible for results from CBT to be anything other than small given the data so far collected. It's hard to read some of the slides on the video, and McKenna seemed cut off by the time limit. Only 5 minutes for each of the speakers is not long.

Kingdon: Jokey comment thanking McKenna for boosting his citations so much. Puts up graph showing that lots of studies which found that CBT did not lead to a significant improvement did have CBT groups looking marginally better than control groups. Then goes on to talk about study which found no improvement immediately after treatment, but an improvement at 18 months and 5 years (Looks like this study: http://www.feltoninstitute.org/approach/CBT.SCZ.5yearfollowup.pdf ). My comment: It could be that CBT is more able to provide lasting value to some schizophrenia patients than befriending therapy - I've seen it argued that this is where CBT is valuable to those with depression too - don't know if there is good evidence that CBT has better results over the long term though, and this one study could be unusual. Kingdon briefly goes through some studies he's worked on, then talks about expected effect size for CBT for psychosis in relation to other medical interventions, mentioning this paper "Putting the efficacy of psychiatric and general medicine medication into perspective: review of meta-analyses" http://bjp.rcpsych.org/content/200/2/97 - however, given the problems with bias affecting results from CBT trials I'm not sure how strong a point that is (although there's a good chance a lot of the other effects sizes in that review are exaggerated too). Ends with a terrible bit on pharmaceutical companies selling drugs with marketing gimmicks. Goes on to suggesting it's just absurd to think that journals and peer-reviewers could be involved in over-selling a treatment: "I won't call it a conspiracy but..." [laugh from audience]. Massive appeal to authority for NICE. 'They met, they had committees, they deliberated for months...' we all know committees are never wrong. Amazing. The follow-up data seemed like a potentially worthwhile point but only looked at one trial, and this stuff is infuriating.

Laws: Mentions the view that 'if CBT is oversold it's in the way that many medical interventions are over-sold' says that there's something to that, so jokes that you should all just vote 'yes' for the motion. Goes on to say that actually he thinks that there are unusual things about the way in which CBT for schizophrenia is oversold. Puts up a graph showing the declining effect of CBT for schizophrenia in meta-analyses from 2001, where it was reported that 50% of patients benefit, to the last 5 meta-analyses, where only 5% of patients were benefiting. Makes the point that wasting the time of 95% of patients is a bad thing (such an under-valued point imo). Laws not so respectful of NICE's authority: goes through the list of things NICE recommends CBT to schizophrenia patients for, pointing out problems (eg: claimed to help with 'insight' and 'medication adherence' in 2002, but not in 2009 - said there was no evidence to justify inclusion in 2002, no evidence to justify changing claims in 2009), argues that there's no evidence to support NICE claim that CBT is helpful for schizophrenia patients in a number of different ways. Laws also says that it does not work for relapse, and that this was shown in [inaudible]. Slide has "It's not a panacea" quote - the familiar cheap and meaningless way to sound reasonable and cautious. Goes on to provide examples of six different negative studies being spun as positive [maybe a dig at Layard's Happiness book too?]. Quotes Kendall saying "Interestingly, psychosocial treatments - such as CBT and, more recently, art therapies... have shown more promise than drug treatments in reducing negative symptoms..." (http://www.bmj.com/content/344/bmj.e664) - says that this is 'total nonsense'. A few other examples too, including quoting from this letter about a Kinderman and Kingdon paper:

I am a little confused by the authors’ conclusions. After clearly demonstrating no superior effect for CBT over supportive counselling on measures of symptom reduction and relapse rates, the authors conclude their paper by stating that they ‘ suggest that the optimum psychosocial management of early schizophrenia would include a combination of CBT and family intervention’. Would it be rude to suggest that the authors take into account their own findings before making such a statement?
http://bjp.rcpsych.org/content/185/5/438.1

[authors response also at that address]

Kinderman: Starts by saying that he thinks we should return to the actual motion, although I thought providing examples of people overselling CBT was pretty on-topic. Says he's the fourth white middle-class male to speak so maybe it's time to listen to some other views - puts up an anecdote he (a white middle-class male) selected. Kinderman mentions this study as showing CBT improves results to patient's brain scans -(http://brain.oxfordjournals.org/content/early/2011/07/11/brain.awr154.long it's vs Treatment as Usual, and if that means that people are receiving no support and little social contact, it's not that great that a course of regular CBT would lead to people responding differently to angry expressions (I've only read the abstract)). Kinderman talks about NICE only saying CBT should be offered, not forced [fair point and gets applause], but imo if exaggerated claims about efficacy are being made then this does lead to treatment being imposed upon people who would not want to spend their time on it if better informed. Then he moves on to comparison with overselling of anti-psychotic medication. He paints CBT approach as underdog against entrenched interests: 'I accept that CBT is challenging the dominant orthodoxy and the financial interests of pharmaceutical companies' - thanks for accepting that. Then goes on to quote from the abstract of the recent meta-analysis Laws was involved in (http://bjp.rcpsych.org/content/204/1/20), complaining that Laws has been more critical of CBT in blog posts than he is in peer reviewed papers (would have been better if he'd quoted examples from Laws' blog posts). Selects another anecdote from a patient's mother - she talks about her son being able to start part time work: it would be interesting to know if there was employment data from CBT for schizophrenia trials. Ends by saying that it has not been oversold, and that it is scandalous that patients do not have access to it.

Comments/questions from the audience:

1: Raises concern that promotion of CBT is leading to other psychosocial interventions (mindfulness etc) being ignored.

2: Says that he's working in an area with many psychotic patients and cannot remember any of them being referred to CBT in the last 5 years, thus undersold?

3: Patient talks about having been put on and trying lots of different drug treatments, currently found medication which has broken cycle of hospitalisations, but wants social model, not medical model. [I think that the biopsychosocial approach, as used by the British state and researchers connected to the insurance industry and DWP is massively worse than both though].

4: Clinical psychologist wants to know why McKenna/Laws think CBT is so popular with patients, and what they'd recommend instead.

Laws says largely ineffective CBT is blocking the emergence of other therapies. Goes on to say 'If I convince you that your God does not exist, then I don't have to provide you with a replacement God.' [Nervous laugh from the audience/clergy].

Murray speculates that CBT is used to cover the fact that psychiatrists are often poor at talking to patients, and that maybe one reason for diminishing effect size is that earlier positive studies had social impact, encouraging changes to TAU which integrated aspects of what made CBT effective. If CBT was really helping 50% of patients, and that benefit was now a part of TAU, wouldn't we have noticed massive improvements in outcomes for patients? Seems like a story designed to let everyone feel good about themselves.

5: Fergus Kane says that there are many different types of CBT for psychosis. Says that it should really be getting better over the 30 years of practice. Says it's not honest to say CBT is not effective if control is befriending, as befriending works, placebos work, etc.

[A bit OT, but befriending therapy sounds less good a control than I'd realised, as to prevent it overlapping with CBT they've added in restrictions that could lead to patients feeling liking things important to them were being avoided :

2.2.2. BF
This approach has been previously described and is
based on the principles of social support (Milne, 1999).
The approach depended on a high quality interpersonal
relationship which focused on neutral i.e. non-psychotic
issues. BF as delivered was non-confrontational and
non-collusive and conversation was always directed
away from symptoms to everyday activities such as
hobbies, the weather, holidays and sports. No home-
work was given and no techniques used except those of
keeping the conversation going, personal disclosure and
maintaining an interest in the patient's current opinions
and activities.

They do need to prevent BF becoming CBT, and a lot depends upon how that sort of restriction works in practice, but it does seem like a rather artificial restriction to conversation for those receiving BF]

Kinderman says that CBT is not squeezing out other psychosocial approaches, but is the vanguard against the biomedical model. Important to give people choice rather than only drugs. Says that we need to give people what we think is best, scepticism painted as abandoning them. Disagrees with Murray that positive affect of CBT is just from talking to patients.

6: Complains that Laws/McKenna metanalysis is biased, and says that Murray has just written an editorial in which he uses it as an example of why he no longer trusts meta-analyses (couldn't find this). Claims blinding makes results less reliable, as patients try to hide improvements from assessors so that they do not know if they were in the treatment group of not.

McKenna suggests that this could be used as an argument in support of insulin comas for psychosis as much as CBT [or any other dodgy treatment].

7: German lady says something (sorry having trouble with the accent) about support groups becoming better (adopting CBT approaches) and this being a reason behind declining effect size. Then goes on to talk about the need to use outcome measures which are important to patients. Then talks about the desire to change patient's relationships with voices, and says that it's discriminatory to think that voices should be got rid of. IMO: Good to get as much data as possible and important to involve patients in designing/selecting outcome measures, but also it's likely that different outcomes will be important to different patients, and that's why ideally they should be provided with reliable data for a range of outcomes so that they can make up their own mind - some patients are likely to be uninterested in receiving CBT to just change their relationship with their ongoing hallucinations.

8: Trainee says that he struggles to understand mechanism by which CBT can reduce symptoms rather than reduce distress at symptoms.

Kinderman says it's not really the place for a seminar on this, but that it is thought that one mechanism by which symptoms occur is that patients misinterpret internal voices as external, and that by CBT exploring the meaning of these voices you can help people understand and make sense of these voices. Claims that by relating them to experiences that have happened in their lives it can make more appropriate and helpful sense of the experiences that they're having. Says that this is not rocket science and is quite straight forward, but does take sitting down and listening to people. Says that when people are paranoid, that's people making sense of the world around them, and they're interpreting other's actions in a malign way, normally because of things that have happened to them in the past, and that reality-testing these ideas helps them feel better.

Is there evidence to allow therapists to say how current auditory hallucinations relate to patient's past experiences? Or evidence that they're able to do so in any sort of reliable manner? I'm uncomfortable with the idea of encouraging beliefs because those in authority think they are 'appropriate and useful' if there is not also good evidence indicating that they are likely to be true (maybe I'm paranoid about this?!)

McKenna replies by asking how Kinderman would make sense of John Nash's (From A Beautiful Mind film) hallucinations, Kinderman says something about a seminar and Murray moves things on.

9: Asks what the two sides think about the idea of using both CBT and medication.

Kindon says that's what is generally done. Kinderman says that he has some concerns about the long-term impacts of medication, and that his older bother suffers from psychotic episodes and he see positive and negative affects of medication.

Laws says recent Lancet study is the only one to look at CBT for unmedicated patients and found lots of serious adverse events.

10: Asks whose decision it is that it's misattributed thinking?

Kinderman says that no-one person is deciding, but that it's the conclusion of a lot of research into hallucinations. Says that if there is no external voice, but the patient thinks there is, then if we disregard supernatural explanations it is by definition a misattribution (I thought that the questioner was asking 'who decides that a patient's belief that an auditory hallucination is a result of problem with their brain rather than life experience is a misattribution' but could well have missed her meaning).

McKenna says that of the two theories of hallucination i) misattribution of internal thoughts ii) over-activity in the speech area of the brain, there's no good evidence for either. Kinderman disagrees, Murray moves things on.

11: Mentions other talking therapies, including encouraging patients to talk to an empty chair or puppets. Mentioned that he got good results for a small RCT using avatars.

12: Ed Sykes from the Science Media Centre (he's an observer offering advice at the ME/CFS collaborative - because the SMC have been so great for ensuring accurate reporting in this area!): He's been listening to both sides and feels like Laws/McKenna have successfully argued that CBT has been oversold in paper's abstracts, while Kinderman/Kingdon has successfully argued that NICE recommended treatment is under-provided. Wants to know if Laws/McKenna think treatment is of some value.

Conclusions:

McKenna: Live by meta-analysis, die by meta-analysis.

Kingdon: Says he was going to criticise the Laws methodology for not focussing on target symptoms, as CBT targets specific symptoms, but he won't do that (he just did). Could challenge them on heterogeneity. Instead says he will challenge Law's maths.. but it turns out Laws was right (that there were more authors for the Morrison RCT study than there were patients left in either arm at the end: 19 vs 18 & 18). Goes on to say that if people have suffered trauma, surely we should be listening to them. Then quotes patient testimony. Asks people to vote against motion and "help make sure that everybody who will benefit from these interventions does so".

While voting goes on Murray says that this is a debate with high stakes, so he's pleased that it has been good humoured.




My impression: I didn't really like the format and felt that I've learnt more from the discussions taking place on-line.

I'd have liked to see more back and forth, particularly on:

Is there decent evidence that CBT does better in long-term follow up than it does in the short term?
Is there decent evidence that CBT leads to improvements in employment rates?
Did Kinderman have specific quotes of Laws doing negative spin on his blog? If so, can Laws defend them.
I'd have also liked more discussion about the extent to which therapists can accurately identify how patient's life experiences lead on to specific hallucinations. Is this just myth building/supposedly noble lies? (Maybe I'm less well informed on this stuff than they expected the audience to be).
Do both sides agree that the evidence indicates it's around 5-15% of patients who will benefit from CBT? If so, is this being made clear to patients offered CBT? There was a weird lack of discussion over the specifics here imo.
Also, I think that maybe Laws and McKenna wanted to avoid criticising CBT while talking positively of meds, and as some of the overselling involved comparing CBT efficacy to meds that meant we didn't get into the details as much as I'd have liked. The time limits would have made this difficult, given the likely spin around meds and the problems with side-effects, but without this I felt like a lot of the examples of overselling were difficult to judge the importance of. NICE was the most important one covered but they only had examples of NICE listing ways in which CBT was helpful when there was not good evidence that this was the case, not NICE claiming that (for example) 50% of patients would benefit from CBT. Also, arguing that NICE should not recommend CBT could be presented as being 'anti-choice', especially while other areas of social support are being cut - not that this sort of pragmatic concern means that CBT is not being oversold.

I thought Kinderman and Kingdon did a good job of turning it into a debate about whether patients should have the choice of doing CBT. I wonder if Laws and McKenna should have pointed to some of the overselling which has gone on in the media as well as in academic papers as media reports might be expected to have more of an impact on patients - but then, a lot of researchers seem happy to turn a blind eye to over-selling of all sorts of research in the media so maybe no-one would have cared.

I've got some more confused and uncertain thoughts on all this that I think I'm going to let stew for a bit, or else see if anyone else's comments prompt some clarity.
 
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Sean

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This could go on indefinitely of course: CBT must be delivered by an expert with x years training; CBT works when used in the clinic; CBT works for those individuals rated suitable for CBT ...ad infinitum...

And, of course, the lowest of possible excuses: Patients are choosing not to get better.
 

Esther12

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I've been reading some bits and pieces about 'stigma' and social aversion towards schizophrenia, and how that relates to people's view that psychotic symptoms are a result of genetic and biological factors rather than emotional strain. There were a few surveys coming out from 2005 on indicating that as society came to view psychotic symptoms as a manifestation of brain/biological disorders, they also became more afraid of of people suffering from these symptoms, and keener to avoid them as neighbours/babysitters/employees, etc. One could see that as evidence that people were taking these problems more seriously, or that biological explanations were encouraging unreasonable prejudices.

I don't really know much about the culture and politics around the CBT for psychosis debate, but feel like... err actually, I'm not going to say yet. I think that a desire to pragmatically manage social beliefs has done a lot of harm with CFS and I sometimes get a sense that some similar problems are ocuring with schizophrenia (although in a different way).

I'm a bit knackered by this stuff but have started reading some bits from schizophrenia patients too. I think that it is good to look at these things for a different patient group, and see things as an outsider.
 

biophile

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Bump. Debate still going on.

http://discursiveoftunbridgewells.blogspot.co.uk/2014/04/a-national-scandal-psychological.html

https://twitter.com/Keith_Laws

https://twitter.com/CoyneoftheRealm

Many of the tweeted themes sound similar to or familiar with CBT for CFS too:

- Senior proCBTp advocates adopting unhelpful paranoid identity politics: if u question it's effectiveness u r against improving patient care

- If I've learned one thing from this CBT for psychosis debate- its just how many techniques people have at their disposal to shut down debate

- Goodbye science: "All parties have agreed that argument about statistics and methodology has become unproductive."

- #NICE 2014 guidelines for #schizophrenia & #psychosis didn't change from 2009. Has nothing important happened?

- Main problem is massive lack of recording and reporting of side effects in psychotherapy - only around 20% include any info

- Promoters of CBTp retreat to rhetoric, testimonials, invective when confronted by null results of @TheLancet trial

- As I began at Maudsley Debate-all interventions gulity of overselling but CBT for psychosis seem to think theyre immune

- Researcher allegiance in psychotherapy outcome research: an overview of reviews.FINDS ROBUST EFFECTS. http://www.ncbi.nlm.nih.gov/pubmed/23500154

- Meta-analyses from professional organizations can be as tainted by conflict of interest as those from Pharma

- Therapists need to demonstrate their 'value-added' or its dodo conjecture

- Why do (some) CBT researchers see a critique of current evidence as a call to abandon CBT rather than a call to do better research?

- The problem according to CBT for psychosis advocates is that we choose what to measure ...in advance

- of course, you could run a trial & register it later....or parts of it (not the analyses perhaps?)

- What amazes me is that some people think a scientific debate can be resolved by a vote.

- I agree- a new low in CBT for Psychosis discussion - ad hominem attacks, anecdote & no replies to my reasonable responses

- Brit Clin psychologists need appreciation how arrogant dismissal of critics, use of pt testimonials embarrasses them internationally.

- I see that Richard Bentall again cannot avoid trying to belittle his 'opponents' but does avoid answering questions

- as I said- there is no detail - it's chaff thrown up as if it had a basis

- and unfortunately they tend to dominate through aggressiveness and obfuscation

- I can see why you might find the non sequiturs, antics & mutual applause of some CBTp proponents amusing...

- You're not one of the High Priests so you can't debate the sacred texts.

- 'Changes the brain' is a poor argument! So do juggling and taxi driving but do they cure psychosis?
 
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Esther12

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I'm finding it hard to follow some of the arguments now taking place on-line, or else people are just talking past each other.

I was looking at forums for schizophrenia patients over the last few days, and have found that interesting (and a bit heart-rending). I saw a lot of interesting similarities and differences to the problems reported by those with CFS. The first discussion on CBT I found had the view that CBT is being promoted just so therapists can keep their jobs... militant Cartesian dualism!
 
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peggy-sue

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This is a purely anecdotal comment. I have pondered Schizophrenia academically and worried about it for a long time, grabbing hold of snippets of any relevant info that I encountered over the years, because I'd like to be able to gain some sort of understanding of it.
It's not something that's ever happened to me, so I am clueless.
It does give me some insight into how folk who've never had other problems, such as depression, can possibly hope to understand that either, though.

One little thing I discovered was the story of the concert pianist John Lill. He hears voices. He has, all his life.

He likes them. He hears the voice of Brahms, encouraging him and supporting him.:thumbsup:

"Hearing voices" though, is only one of the many symptoms, isn't it?

But if somebody could be persuaded via CBT, to see/hear their voices as positive, rather than negative, it might help reduce how awful they are to experience.

But frankly, I reckon that the life circumstances and whole environment of the person is going to be of more influence on the voices being positive or negative than cbt could ever hope to achieve.
Sticky plasters over destructively deep wounds again.

I'd happliy see CBT consigned to the bin. It's nothing more than a self-grandioising career path just leading up mythical ivory towers.
 

Esther12

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I get what you're saying peggy-sue. There's almost always a way of imagining how people could alter their beliefs in a way which would make their lives easier - but it often tends not to work out so well. I can feel that I am emotionally more open to the state encouraging people to think in a particular way because they have been diagnosed with schizophrenia, than because they have been diagnosed with CFS. I'm not sure how related this is to the fact that I see them as 'other', to what extent it's because schizophrenia involves disordered thought in a way that CFS does not, or to what extent it's normal (in our society? for humans?) to think that those suffering in ways that oneself is not could (and should) improve their lot in life by altering their cognitions/attitude etc.

This at the blog biophile linked to seems pretty dodgy:

Richard Bentall: NICE has to make an estimate of the number of sessions likely to be required for economic reasons. When they say 16, they mean, in their estimation, most patients will show a worthwhile benefit in this time.

If patients are being told that most of them will show a worthwhile benefit after 16 sessions, then I don't see how that can be justified.
 

peggy-sue

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I think it's highly dodgy to start attempting to get somebody with schizophrenia to change their views of their voices to positive from negative.
It was just an observation I was making, really.

Nobody knows what is "going on" for them - only another schziophrenic could possibly try to understand.

I would think John Lill's good fortune with his, is because he's had not too bad a life...

Being able to play the piano the way he can is an incredible gift, it's incredibly therapeutic to be able to work all your emotions out while creating art, his career has been highly successful.

He's had all the good fortune he needed in his life - talent, the opportunity to have it nurtured, the time to practise, getting the career breaks that made him a "star".

Perhaps schizophrenia wouldn't be such a difficult thing to deal with if you're not socially disadvantaged/ ghettoised/marginalised.
 

biophile

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Still going on after all these months. These recent tweets from Laws sound like they could also generally apply to CBT for CFS, particularly the refusal by NICE to update the guidelines (which in the case of CFS, the evidence is 7 years old):

https://twitter.com/Keith_Laws/status/537973668845211649

Keith R Laws @Keith_Laws

Dear @DCPinfo @BPSOfficial are you happy to keep referring to (biased) NICE advice on CBT for psychosis that examines RCTs only until 2008 ?

https://twitter.com/Keith_Laws/status/538082142589571072

Keith R Laws @Keith_Laws

. @AshleyCurryOCD @Mental_Elf I'm perfectly happy to go on record as saying that the NICE Committee advocating CBT for Psychosis is biased

https://twitter.com/Keith_Laws/status/538077015388475392

Keith R Laws @Keith_Laws

Will NICE change their guideline on CBT for psychosis? The committee is full of biased CBT advocates...what do you think? @AshleyCurryOCD

https://twitter.com/Keith_Laws/status/537974189727428608

Keith R Laws @Keith_Laws

Dear @DCPinfo @BPSOfficial progress in truly 'understanding psychosis' requires 1) not misreprsenting data & 2) not misleading sufferers

IMHO, the NICE guidelines for CFS must be updated to reflect the modest results of the nonblinded PACE Trial and other studies, and make it clear that the benefits of CBT/GET are for a few self-reported outcomes only and not matched by the National Outcomes Database data (routine clinical practice), and that even in trials there are no clinically significant improvements for other important measures such as objectively measured physical activity, employment outcomes, welfare benefits or insurance payouts, walking test distances, total service usage, neuropsychological test performance, quality of life, etc. For most of these outcomes, there are no statistically significant differences either.

Not to mention the FINE Trial results which included severely affected patients i.e. that pragmatic rehabilitation using similar principles to those of CBT/GET do not yield clinically significant benefits at the primary endpoint. NICE should also address the "bastards don't want to get better" comment from FINE as an example of what happens when patients and nurses are subjected to exaggerated expectations from patients due to flawed rationale of therapy.
 
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Sean

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Not to mention the FINE Trial results which included severely affected patients i.e. that pragmatic rehabilitation using similar principles to those of CBT/GET do not yield clinically significant benefits at the primary endpoint.

clinically significant

Is the story that they didn't even reach statistical significance at initial publication, using the original definitions and thresholds in the trial protocol, and only managed to reach that standard, but not clinical significance, after later indulging is some post-hoc post-PACE 'recalibration' of the definitions and thresholds?

Have I got that right?
 

biophile

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@Sean, that is correct, except it may not be accurate to say post-PACE as if it was inspired by PACE data. It technically took place after PACE had access to the trial data (and before the Lancet publication), but the re-analysis of FINE data appears to be inspired by a BMJ Rapid Response from Bart Stouten, who suggested using Likert scoring for the CFQ.

http://www.bmj.com/rapid-response/2011/11/02/fatigue-scale-0
 
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