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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
Twitter is not known for it's elegant grasp of nuance in argument!
The Mental Elf blog said:A new report has been published today by the British Psychological Society Division of Clinical Psychology entitled ‘Understanding psychosis and schizophrenia: why people sometimes hear voices, believe things that others find strange, or appear out of touch with reality, and what can help’.
The report is being formally launched at a conference today in London.
The 180-page document has been written by a “working party mainly comprised of clinical psychologists drawn from the NHS and universities”. It has been welcomed by a number of key mental health organisations, including Mind.
This blog offers a critique of three key elements within the report, each of which has been tackled by an individual with special interest in the area:
The report reviewed by our bloggers was the version available on the BPS website on 20th November 2014.
Ben Goldacre said:BPS president elect is trying to silence twitter discussion of dire BPS paper
https://twitter.com/profjamiehh/status/538768180391706624…
http://www.thementalelf.net/treatment-and-prevention/medicines/antipsychotics/understanding-psychosis-and-schizophrenia-a-critique-by-laws-langford-and-huda/… Very backward.
I don’t feel it’s appropriate to do a similar exercise with respect to drug trials (looking at potential conflicts of interest, potentially procedural issues, such as blinding there too, the adverse effects (which can often match the beneficial effects) and the long-tern consequences). But the point is that it is possible to selectively pick a certain sub-group of RCTs and then demonstrate a lower averaged effect size for that selected sub-group.
https://twitter.com/Keith_Laws/status/538833524372299776
Keith R Laws @Keith_Laws
While NICE recommends only (ineffective) CBT & it hoovers up research funds - alternatives will be very slow to develop @mollocate
https://twitter.com/bengoldacre/status/538785733239382017
ben goldacre @bengoldacre
@Mental_Elf I’m amazed and saddened by this, it’s a weak BPS paper, but resorting to “don’t discuss this on twitter” is a whole new level.
https://twitter.com/Keith_Laws/status/539075924747386882
Keith R Laws @Keith_Laws
So now we know *one* reason CBTp survives - neither NICE nor some advocates have any interest in RCT quality
https://twitter.com/Keith_Laws/status/539074801667964928
Keith R Laws @Keith_Laws
But having said that - it is precisely how NICE have operated on CBTp - no attention to study quality
https://twitter.com/Keith_Laws/status/538966486711549952
Keith R Laws @Keith_Laws
. @Rooingaround @profjamiehh @peterkinderman @PsychiatrySHO @SameiHuda @Mental_Elf Try to publish paper critical of CBTp-set aside 3-4 years
https://twitter.com/Keith_Laws/status/539070852894302208
Keith R Laws @Keith_Laws
That's clarified things - Peter Kinderman expresses his view about blind vs nonblind RCTs assessing CBT for psychosis http://t.co/yU7Y2XsToO
https://twitter.com/Keith_Laws/status/539074259302506496
Keith R Laws @Keith_Laws
A plea to put the clinician bias back into effect sizes by Peter Kinderman- bit stunned really http://t.co/yU7Y2XsToO
A note on ‘terminology’
I was also interested in the constant use of inverted commas around ‘antipsychotic’, and indeed the sporadic use of ‘psychosis’ itself in the same state. Clearly the authors, and those who they feel they represent, choose to see the terms not as ‘real’ but as ‘constructed’ or ‘disputed’. I’m fine with that – but I wonder if it will serve the interests of the majority of people for whom this report is meant. For those who have come to form their narrative of suffering and healing using these terms, which is plenty, I can see the inverted commas being quite devaluing. Again, I’m happy to be challenged.
However, despite the scattered strong points, the space dedicated to medication reads very much as a step-by-step critique of it. For example, more than half of the free text in the ‘how medication can be helpful’ segment is spent undermining how medications are commonly thought to work – with highly scientifically controversial statements.
The ‘key point’ that there is ‘little evidence that [medications correct] an underlying abnormality’ is bizarrely unfounded. An excellent summary by Kapur & Howes (referenced earlier in the report itself) and further imaging studies by Howes and others provide solid evidence for elevated presynaptic dopamine levels being a key abnormality in psychosis, and there is copious evidence that inhibiting the action of this excess dopamine using antipsychotics leads to clinical improvement in psychosis.
The UPS report would have been stronger if it acknowledged it’s weaknesses, but this goes against its absolutist view that all psychosis phenomenon can be understood. It states Bentall’s view that once psychosis can be understood then there is no reason to posit an underlying illness. Hence any weaknesses in understanding are skated over, and phenomena not easily explained in this way are minimised.
First, one important conclusion would be that it’s important that we support individual choice. There is plenty of evidence that there are a number of beneficial therapies that the NHS should provide. There is plenty of evidence that many can be beneficial. There’s also evidence that our own personal preferences are both valid and important. And there simply isn’t overwhelming evidence to reject one approach and support another. So, point #1 – support individual choice.