Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain

https://twitter.com/user/status/1104587965701984256

https://twitter.com/user/status/1104574867662430208

https://twitter.com/user/status/1104717898851991558

https://twitter.com/user/status/1104635632121536514

https://twitter.com/user/status/1104794084126982144

 

https://blogs.scientificamerican.co...e/have-pain-are-you-crazy-rare-diseases-pt-2/

 

Looking through the comments, I don't see too much un-reasonable criticism. The study looks awful. It's uncontrolled and restricts a key term that jacks up response bias. Multiple treatments at once. The 92% having 0 pain after 2-weeks is a huge red flag for the diagnosis/admission part. No treatment is that effective.

Pain is normal and excepted. No big deal. CRPS is not that. Focusing on low-cost, drug-free therapies, though popular for obivous reasons, is not valid if the research backing them up is not valid. It has downsides too, it pulls attention and money away from quality research of the pain disorders.

The ideas behind the research are old cliches - the sickness role, sickness communities perpetuating illness.

This sounds like absolute nonsense, what are your thoughts @Jonathan Edwards

If these researchers actually believed in their treatments and their theories, they would be doing the studies right - they know how to do them.

 

I'm confused.

Is CRPS characterised by severe pain, or extreme pain? As if it's severe then, based solely on the above description quoted by @lunarswirls, there is a definite possibility I may have it, I certainly have periods with all the symptoms conconcurent.

However if it's extreme pain, then I don't. Extreme pain is worse than severe, at least IMO (I'm aware others may use the terms interchangeably), and whilst cyanosis can be concurrent with severe pain I don't ever remember it being concurrent with extreme, for gods sake kill me now, pain.

 

From Twitter link

 

You can read more about CRPS here:
https://www.ninds.nih.gov/Disorders...ets/Complex-Regional-Pain-Syndrome-Fact-Sheet

 

https://twitter.com/user/status/1104610421170950144

https://twitter.com/user/status/1104610438355054593

 

Very informative, thanks!

 

Thank you.
I'm pretty sure my pain isn't 'regional' enough to qualify, more or less my entire left side, excluding large portions of my trunk, doesn't sound very 'regional', at not least in the way it seems is intended.

 

As teenager I went to a hypnotherapist and lied about it helping me, out of a combination of pressure, conforming to what was expected, and wishful thinking.

Children (and adults) tend to go along with the story presented to them, that the treatment will help them. That doesn't mean it actually will.

 

Maya Dusenbery's list of questions is on point.

(Deleted some questions, need to re read when rested)

 

Sooooo brainwashing, y/y?

Oh, those poor, poor doctors. This kind of reporting is absolutely sick-making.

 

Not much can be gleaned from only the abstract of a study. I did note that David Sherry has done several juvenile arthritis studies, listed on PubMed.

I need a way to access the whole study report. Also, in the US clinicaltrials.gov does had ethical review board for each study listed, I think, as well as other info that is highly relevant but may be downplayed in the final study report.

 

Hopefully better than ethical review for UK.

 

On the contrary, I think that many of these individuals are what I would call True Believers. They just see that, in order to "show" the "truth" about how right they are, that requires a certain kind of study and a specific type of reporting. This part isn't in question to me: scientists and clinicians do some real bobbing and weaving in order to continue to support/believe in their own theories, whatever they may be.

It may be that people do this when they passionately believe in something and have come to the conclusion that convincing their audience is more important than HOW they do it. They view the end as so desirous (and inherently ethical) that the unethical methods they use to spread the word/prove their point stop mattering.

I am of the firm belief that you can't reach an ethical end through unethical means. It's not only that the ends cannot justify the means; it's that unethical behavior leads naturally to unethical consequences. The clinicians involved have furthered unethical behavior by "believing in" their theory and promoting it as truth regardless of the actual evidence, and this has directly led to harm. It is clearly recognizable as unethical behavior by outsiders (just look at the Twitterstream). They have only succeeded in fooling themselves and a few within their closely-knit community of believers.

Other people can and will fact check & reality check where insular groups won't.

Twitter thread on this:

https://twitter.com/user/status/1105189964449427458

 

I see this often in the psychosocial literature and I don't understand how it goes unchallenged. That it's individualized is the most undesirable characteristic of any treatment. The entire point of large medical trials is to figure out the most standardizable prescription that can be handed out without personalizing anything, as it just adds up the workload if you have to dedicate training and effort to the delivery itself.

For all people like to whine about how all medicine does is handing pills, that's actually its most desirable trait, that it's a compact delivery system that is as self-contained and standardized as possible, with as little specialist training required for delivery, as it can't otherwise be scaled up.

But now apparently that's a positive in the psychology-as-a-replacement-to-medicine movement. It can't scale up! It never will because it would be more expensive and that's the entire point of this whole crazy social experiment. You just can't deliver personalized treatment to a large population. And those treatments all have a very low success rate so the waste is just massive.

It's like all the bad features of psychotherapy and medicine rolled into one package that can't be standardized or scale up in any significant way, just without any of the good parts, things like objective reality that can be measured and controlled for or, you know, being actually beneficial.

 

Right on. Plans never survive their first encounter with reality. It's incredibly difficult to predict what the ends will be, even by carefully controlling the means. In reality, the means generally either become the ends, or influence the ends so much that they make up most of the outcome. Unethical means will almost always lead to unethical ends, they just carry too much momentum to make some magical pivot to some imagined "when I'm finally in charge, I'll use my power for good". It never happens this way.

It's denied but a pillar of the whole psychosocial ideology is that it is founded on deceit. It hides its true intent and makes deceit an integral part of its process when working with patients, telling them lies in order to gain their confidence so that it's easier to brainwash them into believing the therapist's perception of reality. That's gaslighting. It's unethical. It is integral to the psychosocial ideology. Denying that it is so is also part of the process. It's a lie wrapped in deceit.

For that reason alone it is guaranteed to fail. It is not even honest with itself and in its declared intent, even officially. Deceit is baked in and unmovable from the whole. If anything, what medicine needs is radical honesty, not intentionally deceitful manufactured nonsense. One phrase (and its mindset) that needs to be excised (or even exorcised) is: it's for the patient's own good. It's not and almost never is. No one should have the dictatorial privilege to make that decision for someone unless that person has been declared mentally inept through an accountable process.

At the very best all those effects from psychosocial trials are placebo (and a healthy dose of cheating, cherry-picking and bias). And if there's at least one fact of placebo that seems proven, it's that it does not matter if you hide it or not, it works just the same. So deceit should not be accepted since it's not even required to produce this effect.

 

Thanks, I was struggling to put that exact thing into words.

Yes, I've found that to be one of the more odious aspects of the entire business. That's also why the name for hysteria keeps shifting: it's a transparent attempt to put something on the patient's chart that they won't recognize for what it is.

Yep.

This is one of @JenB 's main talking points and I really agree. Start transitioning from a paternalistic authority role to a partnership. Don't use ignorance as an excuse to treat someone else as less than you (your ignorance or theirs!)

 

yeah. "this is going to hurt me more than it hurts you".... UGH

 

Posted a few days ago:
https://twitter.com/user/status/1105348034601279489


(text version is below that tweet)