Lightning Process - discussion thread

No worries - I should have been more clear.

 

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.

So the promotion of LP and its obvious near-complete overlap with CBT, and generally speaking mind-body pseudoscience, sullies the rest by association. Actual guilt by association, as the association is made on purpose by the same people who promoted the early-access pseudoscience. In the end when it becomes clinical evidence, all of this gets mixed in with zero substantial details with other "non-pharmaceutical interventions". LP is on equal footing with every other. A footing that cannot be claimed to be rigorous.

It's all pseudoscience, but the claims for LP are even worse than the popular pseudosciences. Making the lines between all of this disappear, calling the parts that are explicitly quackery, is a strong reminder that all of it is. It will likely get people angry but frankly it doesn't matter, they always are.

I don't think it will be effective short-term but will matter in the end. Because it can be claimed that all of this is "equally effective", whichever way is meant. The reality is they are equally worthless, and LP is a massive anchor on the chain. CBT oddly has credibility, LP cannot have any. NLP is blatant nonsense, although it frankly is no more or less wrong than GET based on deconditioning-that-is-obviously-not-deconditioning.

But the simple reality is that all alternative medicine is the same. What matters is where this "same" is at: rigorous evidence-based, or a bunch of biased nonsense from charlatans with more conflicts of interest than they have interests.

 

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.

Not that any of this matters. It should, but belief and escalation of commitment are impervious to reason.

 

The right word is manipulation.

Brainwashing is not a real outcome, although it's a real process. Just because people can't be brainwashed to do things doesn't mean they can't be manipulated to say those things. Which is what this is all about.

 

On reflection I think you may be right. There are probably better ways to describe it.

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

There may be other physical harms if patients are coerced into exertion but they may be harder to prove.

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.

 

I'd agree that their are aspects of LP that could be viewed as harmful in and of themselves. That does reflect a particular value system though. My impression is that many of those in EBM prefer to overlook that sort of understanding of 'harm', so we often need to do some work to explain and get those sorts of concerns recognised.

I was hoping SMILE would serve as an illustration of the problems surrounding ME/CFS to those in EBM. Instead, it seems to have illustrated the problems with EBM to those with ME/CFS.

 

Here's how I look at the LP (simplifying and summarising) —

We have anecdotes of substantial recovery, even cure.
We also have anecdotes of nil result but also severe deterioration.

Now say ME typically works something like this (framing the mitochondria at the centre): following certain immune challenges in the predisposed there is a viral-induced reprogramming of the metabolism that results in severe reduction of energy generation and degraded cardiovascular performance with widespread associated symptoms. Exertion reinforces and amplifies this pathology. But with many potential co-factors in any given patient, the pathological condition may remain static, spontaneously improve/resolve, or inevitably deteriorate (over an arbitrary time scale).

It may be that for the spontaneously improving group, following a favourable set of inputs, which could principally be rest/pacing for weeks/months/even years, the metabolic deprogramming may start accelerating back to normal. Possibly over some threshold of no return that recovery can be further accelerated with exercise / living a normal life. If they did nothing, they would recover naturally and gradually, if they "push it" they recover faster. Again, this is for the subgroup who have reached a point of spontaneous recovery regardless.

There is no way of knowing upfront what group a patient is in, where they are in the recovery trajectory or how they will respond. There is a high chance that they will be badly harmed. This is because we don't sufficiently understand the biology.

In the meantime you heavily promote the (small number of) success stories and suppress the (possibly large number of) failures and this feature is built-in to the system for both practitioner and patient.

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.

 

Apparently some people need to believe in the lie that they can control the illness with their mind.

And they want to tell themselves the most inspiring story possible, and they seek confirmation and approval for their views from others (as well all do). So they want to tell a dramatic story about recovering from the illness by confronting one's fears or something like that.

And they hate the fact that there is another group of patients who rejects their beautiful inspiring stories as nonsense and is interested in critically evaluating claims. And that other group hates them too for spreading disinformation that contributes to neglect and disbelief.

Two tribes with incompatible views.

I think we've seen where the first approach leads to and it's a complete disaster: the short-term emotional gain is vastly outweighed by the lack of progress and the increasing stigmatization (because patients are inevitably blamed for not getting better when their illness is seen as choice).

 

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

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?
My impression is that:

• folks like @Trish are on record of saying they'd settle for anything that worked ---
• Also Jonathan has been upfront about the need to have a open mind about the cause/solution including the role of the mind;

I take comfort from that.

My impression is that folks here want to see evidence that an intervention works --- they are critical of crap "science" and frustrated that the same old simple to rectify flaws are repeated incorporated into studies that we know have little or no prospect of providing real benefit.

I actually think this community has a lot of ability and its delivered via NICE etc.

 

I actually think Jonathan explained all this very well --- things like EDS were simply the creation of his colleagues ---
Being able to pan you off with CBT, GET ---- are really useful for GPs working on a business model which doesn't reward taking time to actually look at difficult cases (yes they're businesses not employees of the NHS)

If we understand the root of the problem [driving sham treatments] then we can look towards potential solutions like GWAS.
Simon pointed out that a GWAS study in migraine recently identified the pathway, target gene for drugs ---- how many migraine suffers would previously been have been offered sham "all in the mind" treatments ----?

We need to explain that those preferring sham treatments are doing the equivalent of bending spoons --- circus performers --- these are people who are ill --- they deserve respect and help --- not sham treatments.

OK difficult to counter these folks but back to Jonathan's insight --- these are made up treatments, a convenient way to deal with those who have health problems which are not understood/treatable at this point.

 

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.
So once they are in, do they need to 'do' LP for the rest of their lives?

 

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.

 

Indeed, academic papers/academia/publishers need a version of 'requires improvement' and 'unsatisfactory' with the requisite equivalent of what happens when someone in a school was to get such grades. We are just talking about the basics of the validity here and these are all funded from somewhere so it is shocking, like a teacher not just doing a bad lesson for other reasons but teaching the wrong facts or how to do multiplication wrong so it gets the wrong answer the sort of funamental that whatever quality the fluff and pictures and slides round it are you just 'can't have that'.

 

Nailed it.

Worrying - isn't it?

 

Yea but it's truly pathetic i.e. it doesn't take much effort to include objective outcome criteria - examples suggested here are things like measuring participation (attendance) in schools, and the review of PACE highlighted no change in objective indicators like hours worked, participation in education. Then you could push the boundaries and use something like Fitbit --- think some of those studies are like 10 years old!

Think Jonathan highlighted that they may not even like science ---.

They're like a crowd who couldn't be bothered to leave the bar to go to the lecture. Yet they spend their time scheming and undermining.