Behavioural modification interventions for medically unexplained symptoms in primary care: systematic reviews & economic evaluation, 2020, White et al

[rvallee]

I don't blame the patients involved. The blame lies squarely with the researchers for not trianing the patient reps properly in what to look for and what makes good science.

If you're not aware that subjective outcomes in open label trials are valueless, problems with therapist effect etc, you might reasonably assume the research is valid.

If you are unaware that the researchers doing the systematic review are some of the worst perpetrators of bad science, and you don't have sufficient background knowledge to know what good clinical trial evidence should look like, how can you be objective?

That's what I meant. I'm not blaming the participants. It just reads too much like testimonials for LP where the participants are told their success depends on believing in it and their words reflecting that need to be positive. Pure tokenism in this case.

There's a trend I noticed in clinical psychology: there is no criticism on substance. None whatsoever, other perhaps than James Coyne and a handful more. Whenever someone publishes a paper or a report the replies pile up, almost all saying variations of: "brilliant", "wonderful!", "genius!!11!". The comments read like people who were with the team as friendly like-minded observers, not critical stakeholders. Patient involvement requires independence and, frankly, hard-ass criticism. This isn't the time and place for niceties, certainly not for testimonials that read like a corporate brochure.

 

[Woolie]

Conclusions
Behavioural interventions showed some beneficial effects for specific medically unexplained symptoms, but no one behavioural intervention was effective across all medically unexplained symptoms. There was little evidence that these interventions are effective for measures of symptom load (somatisation). General practitioner-led interventions were not shown to be effective. Considerable heterogeneity in interventions, populations and sparse networks mean that results should be interpreted with caution. The relationship between patient and service provider is perceived to play a key role in facilitating a successful intervention. Future research should focus on testing the therapeutic effects of the general practitioner–patient relationship within trials of behavioural interventions, and explaining the observed between-study differences in effects within the same intervention type (e.g. with more detailed reporting of defined mechanisms of the interventions under study).

The lack of spin in these conclusions is frankly, surprising. I've seen these guys put a far rosier glow on much weaker results. Do you think perhaps they are happy for people to conclude that mere GPs are not equipped to deal with such important matters?

 

[Amw66]

The lack of spin in these conclusions is frankly, surprising. I've seen these guys put a far rosier glow on much weaker results. Do you think perhaps they are happy for people to conclude that mere GPs are not equipped to deal with such important matters?

Exactly this - we are always told that CBT/GET dosn't work when experts do not deliver it
The king is dead .......

 

[rvallee]

Exactly this - we are always told that CBT/GET dosn't work when experts do not deliver it
The king is dead .......

And now to know where all that PACE money went. The last few years, some of the BPS gang have basically made the case that online versions of their stuff has the same outcomes as the most intensive highly-trained in-person versions. That outcome is null but still, same outcome. And the claim for PACE's massive budget was in part all that training. There is nothing to explain where 90% of that money went to. This is serious fiduciary mismanagement.

People who waste millions for no reason should not continue to get millions in funding. This claim about expert delivery has been used for so long and now it's basically, "nevermind, no difference in outcome between a 'highly-trained' expert and a cheap app". Which also destroys all the claims of personalized treatment, since the one thing that makes the app delivery cheaper is that everything is standardized, nothing is specific to the individual. And anyway large-scale delivery always required things to be standardized as it made no economic sense whatsoever.

Basically all the myths have been busted by COVID or time:

• Nobody seeks the ME/CFS label, it is soundly rejected
• Viruses clearly do cause ME/CFS, likely also bacteria but clearly viruses
• "Expert delivery" of the behavioral model is irrelevant, a standardize cheap app / pamphlet does the same, the same obviously being nothing
• Severity of initial illness may play a factor but ME/CFS does occur even following nearly asymptomatic cases of acute infectious illness so this is nothing like the early fantasies described by Wessely about a severe illness causing seemingly life-threatening terror
• Deconditioning cannot explain the symptoms, it happens far too quickly and is highly fluctuating, which is obviously not a feature of actual deconditioning
• The PTSD excuse also makes no sense, many who were completely oblivious to the pandemic, only had mild symptoms early on and pushed through the symptoms, doing their normal thing, also developed some of the same symptoms as those with severe acute illness
• The bastards definitely do want to get better, most people naturally try the exact rehabilitation approach marketed by the BPS/FND/MUS model, it's just common sense and we are not fragile idiots
• It is definitely not just fatigue, the illness cannot be reduced to this one symptom, even allowing for the absurdity of a symptom having not only its own sub-symptoms but full-on sub-co-morbidities like dysautonomia, and fatigue is actually optional, bit awkward after having put everything on fatigue despite being warned that it was flawed
• The 'anxiety' symptoms are clearly mostly dysautonomia
• Viruses can and do cause many other common diseases and symptoms that fall smack in the MUS bin
• The vast majority of people absolutely, resolutely, hate the "sick role"
• There is no such thing as "secondary benefits"

Probably many more but at this point I think that all the early assumptions have been fully debunked. And still, no change. Because the facts don't matter in belief systems and that is the fundamental issue here: why was an actual belief system, an ideology devoid of evidence or logical consistency, put into clinical use despite widespread failure and harm for decades without any oversight or accountability?

 

[Sean]

Nobody seeks the ME/CFS label, it is soundly rejected

But how else will they get all those wonderful secondary benefits if they don't seek that label?

Deconditioning cannot explain the symptoms, it happens far too quickly and is highly fluctuating, which is obviously not a feature of actual deconditioning

Yep. One of the reasons I am so dismissive of the deconditioning claim is that I know from my own direct experience that it could not possibly be true. I was far too active at onset and for a long time immediately after it (when I shouldn't have been, it turns out,), for that explanation to even be vaguely plausible.

And I know too many other patients with a similar story.

Add in a complete lack of due diligence by those arguing for the deconditioning angle in even checking if it is actually happening, especially in the mild-moderate patients, and it is clearly a fraud of an 'explanation'.

 

[Sly Saint]

the National Institute for Health Research has just published a review of studies of the psychological treatment of Medically Unexplained Symptoms (MUS) https://doi.org/10.3310/hta24460 [Leaviss J, Davis S, Ren S, Hamilton J, Scope A, Booth A, et al. Behavioural modification interventions for medically unexplained symptoms in primary care: systematic reviews and economic evaluation.

Health Technol Assess 2020;24(46)] but in all studies the primary outcome measure was an improvement of symptoms on some psychometric test. No categorical measure was used such as no longer suffering from a ‘disorder’ such as fibromyalgia, irritable bowel syndrome or chronic fatigue syndrome post treatment.

Likewise the Improving Access to Psychological Treatment (IAPT) markets its success on a change in score on psychometric tests the PHQ-9 and GAD-7. Further whether or not an IAPT clinician is to be subjected to a formal review of competence is based on a change of score on these measures.

No categorical measure is used such as the proportion of cases of depression, panic disorder, generalised anxiety disorder etc that have lost their diagnostic status. Sir David Spiegelhalter the Statistician has coined the term ‘number theatre’ to describe the way in which the UK Government has promulgated statistics in relation to the Pandemic, but this drama been playing for years in the mental health arena. I am reminded of a line from a song somewhere, ‘I am more than a number in a little red book’, although intended for a very different context, it seems particularly apt for IAPT.

full blog here:
http://www.cbtwatch.com/number-theatre-and-routine-mental-health/


see also previous blog
The Mismatch Between Clients Global Judgements and Changes on Psychometric Test

A recent study by Hobbs et al (2020) https://doi.org/10.1017/S0033291719003878 compared subjects global judgements on improvement/deterioration with changes on the PHQ9 and found poor agreement. For those who reported ‘feeling worse’ PHQ9 scores showed no change or improvement for 76% of them. Further for those who reported ‘feeling a lot worse’ for 81% of them the PHQ9 showed no change or an improvement.

http://www.cbtwatch.com/the-mismatc...-judgements-and-changes-on-psychometric-test/

 

[rvallee]

full blog here:
http://www.cbtwatch.com/number-theatre-and-routine-mental-health/


see also previous blog
The Mismatch Between Clients Global Judgements and Changes on Psychometric Test


http://www.cbtwatch.com/the-mismatc...-judgements-and-changes-on-psychometric-test/

Honestly this whole thing may be the most incredible example of lies, damned lies and statistics ever. It will live in infamy, used for decades as an example of how to abuse mathemagics in order to fabricate evidence for a teleological ideology. Politicians and governments, business also, lie with statistics all the time. But here it's experts. They are clearly and knowingly lying. They just think they'll be proven right but they are pushing the damned lies and statistics to an almost absurd level.

It's also a lesson in lack of oversight and accountability. This is what happens when you explicitly dismantle all oversight and accountability in order to push through something that cannot pass any level of scrutiny. This is what happens when you give people unaccountable power. Even medical doctors succumb to hubris, even when it maims and kills those they pretend to help, even when they know it and simply choose to dismiss any conflicting evidence, maintaining dogmatic ruthlessness in achieving an ends justify the means mindset.

 

[Joan Crawford]

Those patient comments are very weird, they read insincere, almost fake. Whether real or not, they do not reflect typical patients, at best just tokenism participation. Not to be conspiratorial, it wouldn't even be the worst thing these people have done anyway, but there is a weird quality to fake comments, like on fake product testimonials that read like material straight of the marketing department. And these comments reek of that. Best case they selected people who would say yes to anything and were just happy to be involved. That's not what patient involvement is about, especially with people who operate entirely within a closed circle jerk where no conflicting opinion is allowed.

Tokenism is worse than no patient involvement. It shows blatant disrespect for the very reasons patient involvement is critical moving forward.

I'm glad i was not the only one to think that Weird.

 

[Joan Crawford]

Honestly this whole thing may be the most incredible example of lies, damned lies and statistics ever. It will live in infamy, used for decades as an example of how to abuse mathemagics in order to fabricate evidence for a teleological ideology. Politicians and governments, business also, lie with statistics all the time. But here it's experts. They are clearly and knowingly lying. They just think they'll be proven right but they are pushing the damned lies and statistics to an almost absurd level.

It's also a lesson in lack of oversight and accountability. This is what happens when you explicitly dismantle all oversight and accountability in order to push through something that cannot pass any level of scrutiny. This is what happens when you give people unaccountable power. Even medical doctors succumb to hubris, even when it maims and kills those they pretend to help, even when they know it and simply choose to dismiss any conflicting evidence, maintaining dogmatic ruthlessness in achieving an ends justify the means mindset.

Spot on

 

[Joan Crawford]

The lack of spin in these conclusions is frankly, surprising. I've seen these guys put a far rosier glow on much weaker results. Do you think perhaps they are happy for people to conclude that mere GPs are not equipped to deal with such important matters?

Like a GP even has the time - let alone the will for this! Seriously.....

 

[MSEsperanza]

Stumbled across the paper discussed here when searching for a place to post the following.

Not sure if this is a proper place but as the review discussed here also includes physical activity / exercise, will leave this here for now.

David Nunan on Twitter:

"Here's a talk I gave in 2019 presenting RCT evidence for "exercise as medicine": https://t.co/fE9S2eN6T4 TL DR = - most RCTs show effect favouring exercise but few clinically meaningful effects - most RCTs are poor - certainty of trial evidence-base is therefore poor"



As I have indicated elsewhere on the forum I have some concerns about Nunan's endorsing the Cochrane review on physical interventions against the spreading of airborne virus / rebutting criticism of that review, but maybe with regard to poor quality of exercise trials he has a point?

 

[bobbler]

full blog here:
http://www.cbtwatch.com/number-theatre-and-routine-mental-health/


see also previous blog
The Mismatch Between Clients Global Judgements and Changes on Psychometric Test


http://www.cbtwatch.com/the-mismatc...-judgements-and-changes-on-psychometric-test/

This is pretty pertinent as a reference to bear in mind guven discussion in last year on measures.

Global judgement on whether you are back to old self being totally different to what some of these questionnaire-based measures get as results for same person surely shows such questionnaires they’ve been designing can’t show whether anyone even feels better or is getting better?

 

[bobbler]

full blog here:
http://www.cbtwatch.com/number-theatre-and-routine-mental-health/


see also previous blog
The Mismatch Between Clients Global Judgements and Changes on Psychometric Test


http://www.cbtwatch.com/the-mismatc...-judgements-and-changes-on-psychometric-test/

In fact this would be a good one to unpick with regards 'causing harm', if of course I managed to phrase it in such a way that a layperson could relate to (!) - to me it almost reads like a ready-made Monty Python dead parrot sketch. If you think of it in a layman's conversation or being 'controlled in the conversation by someone wanting to force you to answer a different way' and how violating and inappropriate that is, I suspect picking these apart demonstrates it.

I've used fake question examples of 'say things more positively and try new things' for the sake of a simple example:

E.g. "That does nothing at all, I feel worse, I still can't lift my arm and in fact now I have more migraines than I did before and can no longer work"

"yes, but you said here that you say things more positively and try new things"

"well I did - because you asked those as closed questions and that was what I had been ordered to do, ie the 'treatment' rather than the 'effect' which was for it to make my illness worse"

"I'm sorry but that last bit of your sentence wasn't heard, doesn't count" [puts fingers in the ears]

....and in fact based on this we are now defining the cure and ergo cause of your condition is not thinking positively enough and not trying new things"

Erm excuse me, what logic twist have you just pulled here. So I give you good faith and you abuse that through sophism. And have changed my whole identity, position in the world and condition.

"Yea well, gotcha, now we've got you labelled everyone will assume anything that you say is the false beliefs talking: which we get to write, because after all if you can't think correctly [what we will tell people] then you are not to believed on whether you feel better or what your condition is"

I mean it is technically one meaning of the word psychology but it isn't mental health

And, It's all illogical of course: the drug equivalent would be to tell people to take a drug 3 times a day with water then claim said drug cured leprosy based on 'people showed an increase in taking the drug 3 times a day with water' instead of correlating that to any good or bad impact from it. And to define the disease as 'caused by not taking the drug 3 times a day with water'.

Now insert the condition being OCD. Or schizophrenia. Or diabetes. Or anyone. And what that would do to any of these if they were put through that.


The vicious cycle where the thing 'proven' by the above research design NOT to help, because they did more of it and felt no better, is what people who don't get better are blamed for not doing enough of. The very outcome being turned on its head.

And that 'effect' was gained by tricking participants to confirm that they had been compliant and done more of what was ordered for them to do - so the most 'open-minded' and compliant were the ones who that was used against them as an accusation of the opposite most. Talk about breaking a psychological and ethical contract.

Done by those who work in the area of psychology so do not have the excuse of pretending to not know what they just did.

 

[Sean]

Done by those who work in the area of psychology so do not have the excuse of pretending to not know what they just did.

This.

Of all those involved in this farce, they have the least excuse of all. This is exactly the sort of stuff they are supposed to be the experts at, and advise the rest of us on how to not make these kinds of mistakes.