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

https://www.npr.org/sections/health...-debilitating-pain-the-treatment-is-more-pain

 

So children can learn that if they complain about pain then people will hurt them more?

So they shut up about it.

 

...........


This would be exactly the same theory as how chronic pain happens - 'central sensitivity'.

 

The reason there is more pain is probably because in some ways we're getting unhealthier as society. Allergy, autoimmune, gut and brain diseases are more and more common.

But that's not a nice thought, and a difficult problem, so people prefer to adopt these weird views that instantly suggest some trivial solution.

 

This study is only applicable to children with the CRPS (Chronic Regional Pain Syndrome).
Need to read the whole study (paywalled) to tease out:

103 patients initially. Two week treatment with intensive aqua therapy, aerobic exercise, not using the word pain, psych trmt.

95 became symptom-free but it appears that 46 patients were lost to followup, why?
Then it jumps to 49 were followed for more than two years.
Of that 49, 43 became symptom free, 15 had recurrence (5 of those remained functioning but with some pain.)

 

Or lied about it so as not to be subjected to more pain, especially when the mere fact of talking about pain is frowned upon.

This is the main lesson of torture: victims will tell you anything to make the pain stop. They may even lie about it years later if they fear they could be tortured again. Of course the big tell is in the researcher's framing about emotions, complete speculative nonsense.

Questionnaire-lead assumptions-based clinical psychology is morally and intellectually bankrupt. It's like the madness that caused the old asylum systems was sanitized and spread all over the place instead of happening behind closed doors.

 

I'm currently looking into research of the David D. Sherry the doctor/researcher mentioned in the podcast. This isn't his paper on Chronic Regional Pain Syndrome but another on a similar treatment program for children with fibromyalgia:

The Treatment of Juvenile Fibromyalgia with an Intensive Physical and Psychosocial Program

I've only managed to give it a cursory glance but so far it seems to be extremely worrying. First of all there might is this:

Then there's the section about treatment (my bolding);

The treatment itself sounds horrific enough but the fact that it continues until you have achieved your treatment goals surely biases the appraisal of the treatment? There also the chance that patients might modify their responses to be more positive in order to not
have to continue treatment. Also this(in my own humble/subjective opinion) seems a little unbelievable ;

Seems to me this result is likely to be a result of the patients saying what the therapists want to here.

Edit: First paragraph accuracy.

 

Hard to know what really went/goes on in this experiment (which is what is was). I was horrified at the mindset of the researcher, as outlined in the NPR article.

thanks for reminding me of the nastiness in all this.

 

This is orwellian. How can you forbid patients to talk about something that is a primary outcome metric.

It's like forbidding Hep. C patients from saying "liver" during a clinical trial. Or to forbid CVD patients from using the word "palpitations".

 

I'm finding it hard to refrain from using the word arseholes.

 

You can read reviews of the David D. Sherry on Vitals.com (health professional reviewing website) they make interesting reading. Here are some:

Why didn't the podcast producers check to see what patients were saying about this doctor ? I literally just had to google "David D. Sherry" and "complaints" to find these.

 

@shak8 I agree with your main point: we need to avoid knee-jerk condemnation of a study.
[ That’s the sort of thing we’re suffering from ourselves (e.g. presumptions about “fatigue”).]

We need to understand how pain works and more well-designed studies of factors that don’t involve pharmaceuticals is generally a good thing.
(I am not saying that this one is a well-designed study, I haven’t looked and my first thought is to wonder why it is not done on adults first - communication is likely to be a major factor in outcomes).

We need to be discussing what exactly makes this a bad study.
(Not just see the two words: children, pain, and then riff.)

I know we have legitimate concerns about behavioural studies being misused to imply all sorts of social things. But the fault there is with policy makers and those who summarise the findings of studies. They need to be stopped, corrected, taught to do better.

When talking about research, we need to look at whether the researcher has found a hypothesis that is genuinely confirmable using the methods in the experiment. Has the study sufficiently dealt with confounding factors and so forth to be allowed to proceed? Is it a good method? Has the researcher a good track record in observing and recording results? How about their past conclusions? Were they rigorous and stuck to the observations in front of them? Etc.
All of that should have been done before funding was granted (the last three can be more flexible if they haven’t a track record and the subjects of experiment are unlikely to be harmed in any way).

And of course, if it passes all those sorts of tests, then there’s the ethics board.

The solution to nonsense noise, bad reporting and ‘fake news’ is not more noise. It’s succinct critique and communication. It’s having platforms where information is genuinely exchanged and discussed. It’s careful curation of the published material to expand our understanding of everything, not to confirm our assumptions.
I wish that I were more able to do so than I have been since illness. I am most grateful to those here who do.

 

I am surprised that children might be the subjects in a study like this.

Surely the principle would have to be well established in adults - who are fully informed and consent, their drop-outs counted as part of the outcomes - before considering children in a trial?
Irrespective of morality and ethics, children are less able to communicate their experience reliably, less free to express dissent, more likely to attempt to please in their subjective responses etc.
And then the ethics: power relationships here?

 

Little information is needed to determine that with high likelihood, this therapy is no different than any other similar approaches and explanatory models, and likely to be an abusive mess.

The basic idea is that the symptoms are an error and maintained by what the patient is doing, so therefore the patient must do what they would like to avoid. This is the same idea as in GET.

I have looked into these ideas and haven't seen anything that looks like a scientific basis. The people behind these ideas are unwilling or incapable or uninterested in properly testing them. They seem more interested in selling their ideas, and this article looks like an instance of that.

 

https://twitter.com/user/status/1104542537232969728


https://twitter.com/user/status/1104584747823624193

 

I do see what you’re saying. And am glad if you have read the study, I have not.

I just don’t want good research into this contentious subject to be silenced just because bad research precedes it. I want answers, not confirmation of my current take on the subject.


What I want is that each time a new study is raised on this forum, that someone take the boring step of identifying the first place that that study went wrong (in scientific method) and stating that. A list of more is of course fine too.

I’d prefer that there was also another step: to state how the aims of this experiment might more reasonably and effectively be tested. Or why it cannot be.

But, as I’m not stepping up, I guess all I’m saying is that I’d much appreciate it.

 

Re the tweet from 'Ki' above;

I agree, however this is only managed by desensitising, which can cause issues when you, you know, actually want to feel things again. Once you've desensitised it's not an easy or simple thing to undo, as I am am currently finding.

People should really think twice before advocating this type of technique for chronic conditions, it's one thing to block something transient, but blocking stuff long term.....you can't choose just to turn feeling things back on once not feeling is embedded.

ETA - and it's one thing doing/teaching this sort of thing to adults, but desensitizing children, or attempting to?