Sorry, I misunderstood your point.I'm suggesting that this slur will seem similar to you to how accusations of 'brainwashing' will seem to those who think that the LP has been/may be helpful.
I'm certainly not defending it!
Sorry, I misunderstood your point.I'm suggesting that this slur will seem similar to you to how accusations of 'brainwashing' will seem to those who think that the LP has been/may be helpful.
I'm certainly not defending it!
Sorry, I misunderstood your point.
There is also value in the current attempts to blur everything as "mind-body techniques". LP is for all intents and purposes just as valid as CBT here. They aren't cousins, they are basically conjoined twins. Any criticism about LP applies for everything else in the ideology, the substance is irrelevant here.I disagree with you. We should call out LP for what it is. It's quackery and does a lot of harm. There's not clinical trial evidence supporting it, the Advertising standards agency in the UK told them to stop advertising and NICE said not to use it. It's pseudoscience. I think it's more responsible to warn people with LC and ME against LP than to worry about nuance and not upsetting anybody.
I hadn't noticed the several months after. The usual claims are that a single week-end does it. Garner said a single phone call is all it took.I’ve not read the article, so apologies if I’m mistaken, but these excerpts sound to me like she has had a very normal experience of post-viral illness. We know that most people recover within 2 years – and that many attribute their improvement to whatever therapy they happen have been trying when they started to improve.
One thing that seems strange to me is that she seems to be promoting LP when she hasn’t fully recovered. Would Parker not consider her to still be doing LC? Aren’t LP patients supposed to tell everyone that they’re 100% better regardless of how they feel, or has the secret protocol changed?
I have sympathy with all victims of LP – including those who are brainwashed into believing and/or telling everyone it has cured/helped them – but it is very disappointing to see this pseudoscience promoted in The Times, which has been been so helpful people with ME in recent years.
The hardest thing for me is knowing that people who know me will read this and that it may affect some of their attitudes towards me.
I’m not feeling up to it at the moment but I hope someone knowledgeable will send a letter to the editor in response. (Email: letters@thetimes.co.uk NB Keep it under 250 words, include full address and tel no, and send ASAP)
@dave30th I wonder if you might consider contacting Sean O’Neill to see if he could recommend someone at the Times that you could pitch a counter LP article to?
The right word is manipulation.I agree with Esther12 that the word 'brainwashing' is not a wise choice, and that like it or not we must take account of the ruthless and shameless marketing and propaganda we are up against. It is utterly toxic shit, but it is highly successful toxic shit, and pretending otherwise doesn't help our cause one bit.
On reflection I think you may be right. There are probably better ways to describe it.It also says: "The concept of brainwashing is not generally accepted as a scientific term.[7][8]"
I feel as if that makes it a less than ideal term to use when criticising the pseudoscience of others
I think the evidence for psychological harm is evident from what we know about the LP protocol, and from patient testimonies. It’s the same argument I made in the Times with respect to CBT: telling people that they can get better by their own efforts if that is not true is cruel and psychologically harmful. (I expanded on this here: https://www.s4me.info/threads/nice-...ates-and-delays-2020.12690/page-8#post-297160I guess it depends on how 'harmful' is defined, but what are you classing as good evidence that LP is harmful?
Yes, but I suspect that with LP there will also be many people who say they have been cured even though they don’t really believe it, because they have been taught that they must tell people they are cured in order to be cured.Finding people who believe they have been cured by LP is going to be only too easy. This is the stock on trade of quackery.
I think the evidence for psychological harm is evident from what we know about the LP protocol, and from patient testimonies. It’s the same argument I made in the Times with respect to CBT: telling people that they can get better by their own efforts if that is not true is cruel and psychologically harmful. (I expanded on this here: https://www.s4me.info/threads/nice-...ates-and-delays-2020.12690/page-8#post-297160
I think that's a perfect explanation of why LP, and GET/directive CBT are all unethical. It really bothers me that so few clinicians, therapists, and people who are lucky enough to recover and want to tell their 'recovery story', understand this.Psychology or mind/body has nothing whatsoever to do with the improvement, beyond simply being a manipulative mechanism to try and persuade the patient to advance their activity. You could achieve this similarly at gunpoint.
I use that strong analogy because it highlights how deeply unethical this all is. There is no informed consent, because it is misinforming throughout the entire process. There is no scientific basis to it whatsoever. At the individual level it may cause significant harm. At the population level it is guaranteed to cause significant harm: because it actively subverts the efforts to understand the biological processes that are actually causing the disease. This condemns those who aren't the "guaranteed spontaneous recoverers" which are likely the majority.
I don't think there is any requirement to make accomodations: it is not science and it is not ethical.
Entirely agree i.e. the problems with SMILE include the design being flawed i.e. unblinded and used subjective outcome criteria --- in other words read no further.I agree. And I think that the problems with SMILE are much more serious than just those recognised by NICE.
I'm not offended by psychological studies in fact I've a vague hope that in a placebo type approach way they may give people some benefit --- but I can hear others thinking --- what about the downside of realising they don't give you your old/functional life back?I've heard some patients are offended by psychological therapies but I'm not, and would happily try anything that might help.
I agree with Esther12 that the word 'brainwashing' is not a wise choice, and that like it or not we must take account of the ruthless and shameless marketing and propaganda we are up against. It is utterly toxic shit, but it is highly successful toxic shit, and pretending otherwise doesn't help our cause one bit.
Doesn't mean we should not be openly critical of LP, et al, of course we should. I have no plans on stopping. But how we do it matters.
Is anybody here claiming that the whole BPS/FND project has been a failure at gaining influence and power? Seems to me they have been very successful so far, and a prime example of just why marketing and propaganda must be taken seriously, no matter how much you personally may despise it. If the BPS club are good at one thing, it is that. They know their audience(s), and how to misdirect them away from the gross technical and ethical failures that are the shitty reality of the grand BPS/FND project.
FFS, so far these guys have demonstrated the power to very effectively pervert to their purposes, or just outright ignore, authoritative stuff like the IOM and NICE reports, and the willingness to do exactly that, repeatedly and shamelessly, in full public view.
Just because that is a truth we don't like, doesn't mean we can ignore it.
having watched quite a few LP recovery videos, the participants often continue to 'use LP techniques' almost indefinitely after their initial 3 day sessions. They are also encouraged to keep in touch with their therapist (I don't know if they are charged for these 'booster' sessions?), and many say they apply LP to other life events. Then of course there are those who go on to become practitioners themselves.I hadn't noticed the several months after. The usual claims are that a single week-end does it.
Unfortunately, "useless" isn't one of the options for rating evidence. If it shows any meagre sign of benefit, it's considered useful by the protocol, and all you can do then is lower the rating. Even then, you can't go lower than very low quality, so continued protestations about subjective+unblinded don't result in any movement.Entirely agree i.e. the problems with SMILE include the design being flawed i.e. unblinded and used subjective outcome criteria --- in other words read no further.
I think @adambeyoncelowe pointed out that there was a limit to how much crapiness NICE could detail/include --- But I think NICE could have put down a marker re these types of studies they're useless if they are unblinded and don't use objective outcome criteria (actimetry/FitBit ----)
Brian Hughes words come to mind --- apart from the lack of blinding, the subjective outcome criteria ---- it really isn't that bad a study
Unfortunately, "useless" isn't one of the options for rating evidence. If it shows any meagre sign of benefit, it's considered useful by the protocol, and all you can do then is lower the rating. Even then, you can't go lower than very low quality, so continued protestations about subjective+unblinded don't result in any movement.
There should be a step below very low quality for "uninterpretable", which would result in the evidence being set aside. Sadly, there isn't.
Then again, it may not make much difference, as lack of blinding and lack of objective measures only account for a small downgrading of evidence.
Nailed it.There should be a step below very low quality for "uninterpretable", which would result in the evidence being set aside.
Worrying - isn't it?Then again, it may not make much difference, as lack of blinding and lack of objective measures only account for a small downgrading of evidence.
I guess they don't want to face up to problems with unblinded trials with subjective outcome measures, as that would mean they would have to massively downgrade all trials of psychological therapies. Admitting many Cochrane reviews are rubbish reviews of rubbish could kill off the brand completely, so they are desperately trying to keep a lid on this dirty secret by designing rules for assessing clinical trials that disallow such downgrading.
Never mind patients in all this, they have careers to prop up and reputations to maintain.