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

Andy

Andy

Senior Member (Voting rights)
Sherry says pain used to be more accepted as a normal and predictable part of life. He thinks that the way American medicine now routinely asks patients to rate their pain on a scale of 1 to 10, and treats it like an emergency, has led to more pain in our society: More doctors confronted with kids like Devyn, and more adults complaining of chronic pain. He thinks the more attention you pay to something, the bigger it becomes — because the very act of paying attention to something reinforces connections in the brain.

So to help kids like Devyn, Sherry and a handful of other doctors with this approach want to teach them to stop paying so much attention to pain. Which is why Sherry has concocted an unusual treatment for these kids: "Put them in pain to get them better."

If you force the kids to push their bodies until they are in tons of pain, over time, their brains can learn to ignore it, according to Sherry's hypothesis. He has a clinic at Children's Hospital of Philadelphia where he treats about six kids with amplified pain at a time. He has tracked his patients and says he has seen a lot of success; he published a small study showing that 45 out of 49 patients had remained symptom-free for two years. His approach hasn't been validated by larger, controlled trials, and in fact, a portion of patients don't do well; they drop out or don't benefit in any way.
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https://www.npr.org/sections/health...-debilitating-pain-the-treatment-is-more-pain
 
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.)
 
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shak8 said:
became symptom-free
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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

Objective
To assess the short-term and 1-year outcomes of children with fibromyalgia treated with intensive physical and occupational therapy (PT/OT) and psychotherapy.

Study design
Children with fibromyalgia seen at a tertiary care hospital were treated with 5-6 hours of intensive PT/OT daily and at least 4 hours of psychosocial services weekly. All medications used for fibromyalgia were discontinued. Children underwent standardized testing, including a visual analog scale for pain; the Bruininks-Oseretsky Test of Motor Performance, Second Edition; the Bruce treadmill protocol; the Functional Disability Inventory; the Pain Stages of Change Questionnaire, adolescent version; and the Pediatric Quality of Life Inventory, Teen Report, at 3 time points: at program entry, at the end of the intensive program, and 1 year after the end of the program.

Results
Sixty-four children (median age, 16 years; 95% Caucasian; 94% female; median duration of symptoms, 21 months) were studied. The mean pain score decreased significantly from program entry to the end of the pro-
gram (from 66 of 100 to 25 of 100; P = .001). At the 1-year follow-up, 33%reported no pain. All measures of function
on the Bruininks-Oseretsky Test of Motor Performance, Second Edition improved significantly and remained at that
level or continued to improve over the subsequent year. The mean Bruce treadmill protocol time first increased from 588 seconds to 801 seconds (P < .001) and then dropped to 750 seconds (P = .005), which is at the 90th percentile for age and sex. All Pain Stages of Change Questionnaire, adolescent version subset scores improved significantly initially and were stable or improved at 1 year, as did the Pediatric Quality of Life Inventory, Teen Report total score.

Conclusion
Children with fibromyalgia can be successfully treated without medications with a very intensive PT/
OT and psychotherapy program. They have significantly improved pain and function by subject report and objective
measures of function. (J Pediatr 2015;167:731-7).
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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:

A weakness of this study is that it was not a randomized or controlled trial.
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Then there's the section about treatment (my bolding);

The children were treated either as day hospital patients or inpatients. All children received individualized 1-on-1therapy for 5-6 hours a day, with the focus on quickly re-establishing normal function, along with maximizing aerobic conditioning. Activities typically included timed activities (eg, animal walks, stepping in/out of a tub, running up and down stairs, stepping and squatting activity), scooter boards, treadmill, elliptical, stairs, long-distance community ambulation, strengthening and endurance activities, and dance or other video game activities.
Treatment goals were set high and quickly advanced past the child progressed through the requirements to a higher
level of function and exercise. Children with allodynia received multiple courses of desensitization, including rubbing, local and total body vibration, constant light
touch or compression, temperature and noise desensitization, fanning, and exposure to multiple different textures.
Desensitization was often incorporated into exercises when possible. Children who experienced pain with eating were often required to eat a minimum of 7 meals and snacks per day.
The duration of therapy for each child was individually determined by the treatment team based on physical functioning goals obtained, rate of improvement, and judgment regarding the child’s ability to sustain and further improve on these functional goals in the home environment without formal physical therapy.
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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 ;

One-third of the subjects reported a pain level of 0/100 and another 15% had a pain score between 1/100 and 10/100.
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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.
 
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rvallee said:
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.
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Devyn started fine, but about 30 seconds in, she began to have an asthma attack. Her breathing got more and more labored, until she was gasping, struggling to get the air she needed.

She told the physical therapist that she probably should get her inhaler, but since inhalers are medicine, the therapist directed Devyn to simply walk around the gym and calm herself down.
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You can read reviews of the David D. Sherry on Vitals.com (health professional reviewing website) they make interesting reading. Here are some:

When Dr. Sherry sees a patient with an unexplained condition, he doesn't recognize that he doesn't know what it is or that he can't fix it. Instead, he slaps the diagnosis of AMPS on their forehead and commences with a torturous "treatment plan." When this doesn't work, he blames it on the patient. When the patient starts exhibiting other symptoms, he dismisses them as conversion symptoms and tells the patient to go to therapy. (For those who aren't aware, conversion disorder is the modern term for hysteria.) I never want to see this doctor again. He's ruined my life.
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Dr. Sherry’s logic surrounding the entire program is flawed. If one is supposed to alleviate pain via pretending it doesn’t exist and not talking about it, but that makes the stress worse, and stressmakes the pain worse, than how is a child ever supposed to recover from this (with his philosophy)? The answer is that they can’t. Perhaps more importantly, though, is that Dr. Sherry’s insistence that patients dance with him and his constant proximity to patients concerns me. It isn’t okay to say no to dancing, even if DANCING WITH AN OLD MAN makes young girls uncomfortable (as it should). Don’t send your children to Dr. Sherry. His program is torture.
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It is very difficult to believe CHOP is harboring this doctor and his AMPS clinic. We are both statisticians. A review of his scientific research reveals a sham of a scientific career. Review of his publications suggests that thousands of patients have been harmed. The small number of voices represented here speak for many. I expect within a decade CHOP will go down in scandal for medical abuse against his patients.
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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?
 
Subtropical Island said:
@shak8 I agree with your main point: we need to avoid knee-jerk condemnation of a study.
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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.
 
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strategist said:
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.
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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?
 
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