Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain an RCT, 2021, Asher, Gordon et al

I’m sorry you had to go through that, @Trish - it must have been horrible! Thank you for sharing!

 

I’ve had the same exact conversation. Even if I preface by saying “sorry, I feel awful,” it seems like I never get the same understanding.

A similar moment happened when we were watching the show Survivor together. One of the contestants ended up sobbing on the ground out of nowhere, just from sheer exhaustion after being on a desert island for weeks. My mom’s reaction was to say “oh wow he must be feeling so awful.”

I had to remind her of the times that I ended up sobbing from the exhaustion and pain, and she had just rolled her eyes or ridiculed me. I told her that she had never considered how much pain and exhaustion it would take to drive a normal rational person to tears, and that I was experiencing it at that level very often.

I think between friends, doctors, and random people without ME or a similar chronic illness, there’s just such a massive amount of projection. It’s so easy to frame someone’s behavior as being due to personal failings instead of realizing that their life has additional dimensions they’ve never even considered.

They can understand debilitating pain and exhaustion just fine, but only when it’s preceded by one of the limited contexts that justifies it in their mind. If you’re not on a desert island or don’t have dementia, it’s obviously a performance or you’re “amplifying” the discomfort by fixating on it. Because obviously bodies only break down like that on desert islands.

 

I’m very glad for that as well, but my heart breaks that you and so many had to suffer unnecessarily before the consensus changed.

 

That’s a relief to hear. I obviously don’t have any experience with period pains myself, but an ex had undiagnosed severe endometriosis and ended up with liver damage due to her very frequent use of paracetamol. That was my first bystander experience with the flaws of our healthcare system and especially women’s health.

 

The irony is that’s we’d much rather spend a few years on a Survivor island compared to this living hell.

 

I literally said that once and my parents just laughed! Because in their minds all my problems were from being overly sensitive and averse to discomfort.

Give me a desert island any day.

 

So how does a 'person' reduce something that is not under 'their' control?
I use scare quotes because my understanding of brain dynamics is that psychologists are totally confused about what they mean by a 'person', or 'control'. Popper based his theory of what is science on the example of Freud as someone who did not practice science. I don't see psychology as having changed substantially from the Freudian approach - the use of uncontrolled observations to confirm what you already thin is the case.

 

and conversely, if you can grit your teeth and hide the fact you're in pain, that obviously means the pain isn't that bad. There's no "correct" way to give an external idea of your internal state that will stop someone else dismissing it if that's what they want to do.

 

Exactly, well said! The only way out of it is to just not be sick any more.

Under those kind of dynamics, of course I’m going to be skeptical of someone claiming they’ve recovered after some cognitive reframing therapy. Even if they fully believe in their own recovery, those dynamics mean they’ve just undergone a multi-week coercion and compliance training in addition to whatever ‘stress management’ they’ve been learning.

self-report just doesn’t suffice in those cases. We’ve been saying it over and over.

 

Unless you’re a master of online disguise, that would be one of the last characteristics I would use to describe you based on our interactions so far. I’m glad you know yourself, even though I know how much those comments still can hurt.

 

Haha thank you, that means a lot. It was really just a continuation of old family dynamics for them. I’ve done a lot of work so it doesn’t bother me any more and my mother is coming around these days.

But those clear dynamics in my life are probably part of the reason why doctors and psychologists were falling over themselves to claim my ME was psychogenic. Added: I don’t think they realized that those dynamics made me dismiss and minimize my own discomfort rather than start fixating on it.

Took a few years to realize that “cognitive reframing” can cure me of panic attacks but just won’t do anything for my ME fatigue and pain.

and getting to that realization was definitely harder since I was so used to doubting myself already.

 

The things I mentioned: stress, fear, emotional attachment, etc. Patients can't directly control the pain, but they do have some control over these things which can influence the pain. This study looks into the effectiveness of a technique to do just that.

Of course psychology has changed a lot since Freud. And we now have neuroscience which shows how pain is processed by the brain.

 

We do now have methods such as fMRI. This review from 2016 explains it in detail, and I'm sure there are newer reviews as well:

https://www.tandfonline.com/doi/full/10.2147/JPR.S60433#d1e568

This study is not about ME/CFS, it's about back pain. However, there does seem to be a lot of overlap between chronic pain and ME/CFS, as well as with the interventions that help.

 

Emotional circuits in the brain are fundamental to brain processing. See: https://pmc.ncbi.nlm.nih.gov/articles/PMC8675872/

 

Check out the review I posted in another comment.

 

What is the evidence for that in any relevant situation?
What are the published papers?

Has it, in its basic approach to evidence? Again, it would be useful to have some evidence from publications. I am talking about relevant clinical studies. And even in the more generic sort of psychology study wasn't there supposed to be a 'replication crisis' because nobody could replicate even the most accepted findings?

As I said, I don't see how having neuroscience changes anything much. I have spent a lot of time reading the people who studied mind in the seventeenth century - Descartes, Leibniz, Locke and so on. It is remarkable how much they understood about how the brain must work even though the concept of multicellular organism was only just beginning around 1650 with Hooke's drawings of cells and Leeuwenhoek's observations on protozoa. I studied basic neuroscience in Alan Hodgkin's department in the 1960s and work on fine detail of brain biophysics. I don't see that neuroscience has actually made much difference to the topic we are discussing. Descartes worked out that when the boy touches a fire messages were sent up to his brain via his nerve fibres involving subtle movements of tiny particles. We now know they are metal cations and neurotransmitters but what difference does that make to the overall analysis?

I am not hearing any arguments or seeing any evidence for psychology being able to tell us anything useful here.

 

You seem to be missing the point. If fMRI shows that pain is associated with metabolism over on the left hand side underneath - so what? Descartes knew it was somewhere up there. It tells us nothing useful.

Like there are no interventions that we have reliable evidence for efficacy for either?
Surgery is quite good for some back pain, not for ME/CFS.
CBT and exercise are likely useless for both. Ibuprofen may well help but I doubt anyone has done a trial.

I am intrigued to know where you think this evidence base is to be found? Whether you have an interest in psychology? Are you familiar with problems of methodology or are you talking as a lay person? Why, if there is any usable evidence around, has it not been flagged up here on S4ME. We get papers on CBT and exercise flagged up on an almost daily basis.

 

Well the study being discussed here is one example.

We know a lot more about how the brain works, in terms of which parts of it control emotions, planning, HPA axis, autonomic nervous system, etc. and we also have fMRI which can show how these brain networks function in humans. Animal studies can show in more detail how these networks operate. See the two neuroscience reviews I posted.

 

This review illustrates perfectly the points I have been making. It tells us nothing useful about managing either back pain or ME/CFS. It is full of masses of detail of anatomy and a lot of complicated buzz word language but it does not provide us with a basis for reliable predictions.