Cochrane Review: Psychological therapies for the management of chronic pain (excluding headache) in adults, 2020, C De C Williams et al

MEMarge said:
From the above: " Only 2 outcomes, physical activities and emotional well-being, were assigned comparable importance by survey respondents and clinician-researchers. Five of the 19 outcomes important to survey respondents were not measured at all, and 8 rarely."

SO, how can they keep ignoring Physical Outcomes?
Click to expand...
Thank you - you and @Snow Leopard - I was too lazy to check - assuming those two references actually supported their statement! Ironic! I will compose a comment on the review, unless either of you would like to do so.
 
Snow Leopard said:
As for Turk 2008, table 5 shows that pain was not one of the "important" items and emotional well being (the only measure similar to "distress" was just one of 19 items.
Click to expand...

As someone who suffered with untreated, dismissed and disbelieved pain for decades, as far as I'm concerned pain is THE most important problem for sufferers. If pain is treated adequately then it has impacts on every single facet of life. I can shop for food, I can walk further, I can stand (I find standing more painful than walking and can only do it for short periods of time), I can look after myself and my surroundings, I'm happier, less angry, I can sleep better with less chance of being woken and being unable to get to sleep again.

How can any researcher into illness consider pain to be "unimportant"? Are they human or are they robots?
 
Arnie Pye said:
As someone who suffered with untreated, dismissed and disbelieved pain for decades, as far as I'm concerned pain is THE most important problem for sufferers. If pain is treated adequately then it has impacts on every single facet of life. I can shop for food, I can walk further, I can stand (I find standing more painful than walking and can only do it for short periods of time), I can look after myself and my surroundings, I'm happier, less angry, I can sleep better with less chance of being woken and being unable to get to sleep again.

How can any researcher into illness consider pain to be "unimportant"? Are they human or are they robots?
Click to expand...

From my time at NHS Pain centres it is thought of as something that one can put a side and not dwell on. They don't believe that it should stop anyone from doing anything.

Even pain that intrudes sleep is disregarded.

The most chilling remark by a Pain Clinic doctor was that he didn't believe that pain was the reason for people being there. He felt that it was merely the presenting problem and that most has something else going on "upstairs".

Edit - to put that last word in quotes as it was exactly what he said complete with hand movements
 
Last edited:
When I had 'acceptable' short term pain from childbirth and a broken bone, I was offered the strongest pain relief drugs available and lots of sympathy. When I had the same level of pain from very bad period pains which were as bad or worse that labour pains, even my mother expected me to hide it and 'soldier on', even when I was fainting from the pain. Paracetamol was all that was on offer.

As for chronic ME pain, forget it. Paracetamol barely touches it, and the oramorph I was given briefly for my broken shoulder only dampened the ME pain down a bit, didn't eliminate it. So I soldier on...
 
ukxmrv said:
From my time at NHS Pain centres it is thought of as something that one can put a side and not dwell on. They don't believe that it should stop anyone from doing anything.

Even pain that intrudes sleep is disregarded.

The most chilling remark by a Pain Clinic doctor was that he didn't believe that pain was the reason for people being there. He felt that it was merely the presenting problem and that most has something else going on upstairs.
Click to expand...

I can only assume that the people working in NHS Pain Centres are those who have no experience of severe and untreated pain that almost never stops and rarely reduces. So, I asked the question are they humans or robots, and I'll answer my own question - they are sadists and robots.

Trish said:
When I had 'acceptable' short term pain from childbirth and a broken bone, I was offered the strongest pain relief drugs available and lots of sympathy. When I had the same level of pain from very bad period pains which were as bad or worse that labour pains, even my mother expected me to hide it and 'soldier on', even when I was fainting from the pain. Paracetamol was all that was on offer.
Click to expand...

Both my mother and my mother-in-law made similar comments. Any behaviour that showed I was in severe pain e.g. being unable to stand upright, was considered to be bad manners because it makes other people feel uncomfortable. I was told repeatedly that I had to be "stoical".

What upsets me the most is the injustice of the treatment of chronic pain. People have treated me as if I am beneath contempt for years because I'm in pain.
 
Arnie Pye said:
Are they human or are they robots?
Click to expand...

I really believe that the Dunning-Kruger concept in psychology should be extended to reflect this bias toward how other people deal with adversity. There seems to be a very real bias from Drs and medicine in general that either they would not succumb to these physical ailments or that if they happened to experience them they would be able to 'soldier on' as Trish mentions.

In the field of psychology, the Dunning–Kruger effect is a cognitive bias in which people with low ability at a task overestimate their ability. It is related to the cognitive bias of illusory superiority and comes from the inability of people to recognize their lack of ability. Without the self-awareness of metacognition, people cannot objectively evaluate their competence or incompetence.[1]
Click to expand...

So in this case they do not understand or believe in their vulnerability to a chronic health condition. It is as has been suggested elsewhere a moral condition.

Also, as to the point Trish mentions about easy access to pain meds for 'legitimate' acute health issues, medicine is responsible for feeding a crisis of addiction. There seems to be little intelligence at work with regards to the issues of pain relief. Which would suggest to me that economics / big business (selling pain meds) / politics / privilege (repressive moralising) is the driving force behind how things are managed.

It's interesting (or at least that's one word for it) that Consultation-Liaison Psychiatry has placed itself at the centre of being the solution (personally I tend to think final solution but that's just me) for intractable chronic illness. There is no room at all for CLP to be wrong in their surmise of why we are ill. No research can or ever will bear this out from their POV.

The bias of superiority will not allow for it. And this attitude then self-selects for people who will believe that their motives are purely pragmatic in that they also serve to 'help' people in power to have validation for cutting costs associated with those weak minded-deluded patients.

History will obviously have it's own assessment of this chapter of psychiatry. I happen to think that providing very ill people with a few chats on how to think differently about their situation and then sending them off as rehabilitated and ready to work will not be a good look on psychiatry overall.

As regards NICE it will be interesting to see who will be first to throw who under the bus when the time comes.
 
MEMarge said:
From the above: " Only 2 outcomes, physical activities and emotional well-being, were assigned comparable importance by survey respondents and clinician-researchers. Five of the 19 outcomes important to survey respondents were not measured at all, and 8 rarely."

SO, how can they keep ignoring Physical Outcomes?
Click to expand...
Because the concept of truth is a western imperialist colonial thought structure.
Or something like that
 
Arnie Pye said:
As someone who suffered with untreated, dismissed and disbelieved pain for decades, as far as I'm concerned pain is THE most important problem for sufferers. If pain is treated adequately then it has impacts on every single facet of life. I can shop for food, I can walk further, I can stand (I find standing more painful than walking and can only do it for short periods of time), I can look after myself and my surroundings, I'm happier, less angry, I can sleep better with less chance of being woken and being unable to get to sleep again.

How can any researcher into illness consider pain to be "unimportant"? Are they human or are they robots?
Click to expand...

They do consider it to be important. The point I'm making is that patients rated the impact that pain has on their lifestyle to be more important than simply the sensation/experience of pain itself.
 
Snow Leopard said:
The point I'm making is that patients rated the impact that pain has on their lifestyle to be more important than simply the sensation/experience of pain itself.
Click to expand...

I disagree with this totally - whether this makes me different from other people I don't know. If the sensation or experience of pain is treated to either reduce or eliminate it then most of the other effects of being in pain on my life might disappear. To me, what I suffered from with all the health problems I had was like being tortured, over and over and over again, for years on end. It has made me angry and bitter, and often not nice to be around.

I cannot envisage a situation in which I could fix all the things in my life that are impacted by pain without actually fixing the pain first. It would be like trying to build a house starting with the roof and ending with the foundations.
 
If you have not experienced / been close to someone with chronic pain, appreciation and empathy seem.to be difficult.

My friend's daughter has scoliosis. It took over a year for her to be diagnosed; as a teenager pain was attributed to other things ( too heavy school bag etc... it took almost 12 months to get an x ray, and that was after examination by a locum , ( who seemed to listen to her ) not her usual gp.)

When diagnosed it was found she was sitting bang on the % deformity determining borderline for surgery.
She was told she would simply have to learn to cope with the pain .

Her mother had to make a complete pain of herself to access further physio ( as she had already had physio albeit for non specific back problems) and pain clinic .

Not much benefit ( suggestions of TENS machine - which took edge off for a while , and a Headspace pain app to meditate your pain away )

Private physio ( deep tissue massage as well as exercise) and an understanding that she simply cannot sit for long periods of time have helped.
Stress makes things worse .

The takeaway from NHS provision was simply- grin and bear it / construe it differently.

I do also wonder how long it would have taken to get yo the same point if her dad had been her advocate
 
Arnie Pye said:
I disagree with this totally - whether this makes me different from other people I don't know. If the sensation or experience of pain is treated to either reduce or eliminate it then most of the other effects of being in pain on my life might disappear. To me, what I suffered from with all the health problems I had was like being tortured, over and over and over again, for years on end. It has made me angry and bitter, and often not nice to be around.
Click to expand...

I think we're going off track. The question is, if a patient reported reduced pain during an unblinded trial (or in a placebo arm), yet had no changes when it comes to doing the things that pain stopped them from doing, is the reduction in reported pain trustworthy? Or is the reported reduction simply due to a variety of psychological biases due to participating in a clinical trial?

Caroline Struthers said:
Thank you - you and @Snow Leopard - I was too lazy to check - assuming those two references actually supported their statement! Ironic! I will compose a comment on the review, unless either of you would like to do so.
Click to expand...

I have already submitted a comment, but it has not passed through moderation (and I use a VPN, so it might be in possible-spam-filter limbo forever)
 
Caroline Struthers said:
I commented on the blog, Prof Williams responded, and I responded to that. https://www.evidentlycochrane.net/chronic-pain-psychological-therapies/

It seems that any attempt to point out the obvious problem with relying on subjective outcomes in unblindable trials is deliberately misinterpreted as me advocating for ignoring the "patient voice".

Also, Cochrane seems to confuse patient-reported outcomes with patient-important outcomes - ie. patient-reported outcomes are always good and reflect reality better than objective measures. Therefore it's a great idea to prioritise them even if a treatment is designed to affect the way you feel about and respond to physical symptoms which stop you living your life fully, such as chronic pain and fatigue. Is it so difficult to grasp that trials need to measure as objectively as possible whether people can live their lives more fully as a result of the treatment, not just report they have less pain or fatigue in a questionnaire?

Is this not obvious because it's wrong?? I am beginning to doubt myself to be honest.

Someone whose opinion I trust(ed!) said that they thought Prof Williams response was "largely right". But I am not sure this person understood what I was saying. I think my 2nd comment helped. Why is it so difficult to get the point across?
Click to expand...

It is actually a simple idea that they confound with verbiage.

Consider someone having a course of CBT to overcome a phobia of spiders. At the end of the course they fill out a questionnaire where they say they now have no problem with spiders. That is the measure of success that is used in studies with subjective outcomes.

The objective outcome is to have someone let a pet spider crawl over their hand. If they can do that then the treatment has indeed been successful.
 
Mithriel said:
It is actually a simple idea that they confound with verbiage.

Consider someone having a course of CBT to overcome a phobia of spiders. At the end of the course they fill out a questionnaire where they say they now have no problem with spiders. That is the measure of success that is used in studies with subjective outcomes.

The objective outcome is to have someone let a pet spider crawl over their hand. If they can do that then the treatment has indeed been successful.
Click to expand...
Thank you so much! Yes. Might tweet a version of this beautiful example if that's OK...
 
No problem. It is like some of these researchers missed the introductory lessons at university so they do not understand the basics of what they are doing.

When one researcher was told that replication meant doing an experiment the way it was done before they said "so I should stand on one leg if that is what they did?" :banghead:
 
Mithriel said:
It is actually a simple idea that they confound with verbiage.

Consider someone having a course of CBT to overcome a phobia of spiders. At the end of the course they fill out a questionnaire where they say they now have no problem with spiders. That is the measure of success that is used in studies with subjective outcomes.

The objective outcome is to have someone let a pet spider crawl over their hand. If they can do that then the treatment has indeed been successful.
Click to expand...

Nice example. I note that it's possibly to design a study of CBT for spider phobia with objective outcomes. How strongly a person reacts to having a spider placed on their hands could be measured with heart rate monitoring or an observer that doesn't know whether the person has phobia or not.
 
Mithriel said:
There is an art to designing good trials which is being lost. Though the way trials are used nowadays to confirm theories instead of falsifying them maybe they are designed exactly as they want them.
Click to expand...
Yes, exactly. Good science is about rigorously testing your hypothesis. People are just becoming more skilled at pretending they are doing that when they are doing the opposite
 
Snow Leopard said:
I think we're going off track. The question is, if a patient reported reduced pain during an unblinded trial (or in a placebo arm), yet had no changes when it comes to doing the things that pain stopped them from doing, is the reduction in reported pain trustworthy? Or is the reported reduction simply due to a variety of psychological biases due to participating in a clinical trial?



I have already submitted a comment, but it has not passed through moderation (and I use a VPN, so it might be in possible-spam-filter limbo forever)
Click to expand...
Your excellent comment has now appeared!!! https://www.evidentlycochrane.net/chronic-pain-psychological-therapies/
 
You must log in or register to reply here.
Back
Top Bottom