Catastrophizing, time to ditch the term? - ME/CFS Skeptic blog

[ME/CFS Skeptic]

Catastrophizing, time to ditch the term?
Catastrophizing, a cognitive distortion that amplifies the perceived threat of symptoms, has been at the center of cognitive-behavioral models of pain and fatigue. In recent years, however, researchers argued that the concept has been misapplied and that it has a stigmatizing effect on patients. While some propose to rename the term, the underlying issue appears to run much deeper.

Full article at: https://mecfsskeptic.com/catastrophizing-time-to-ditch-the-term/

 

[ME/CFS Skeptic]

Twitter summary here:

https://twitter.com/user/status/1831699391242989587


1) New blog post about catastrophizing and why this term risks blaming patients by mislabeling their symptoms as exaggerated negative thoughts.

2) Catastrophizing has been a popular topic because it is one of the most consistent psychological predictors of adverse pain outcomes. It is also central to the cognitive-behavioral model of ME/CFS.

There are, however, big problems with how the term has been implemented.

3) Catastrophizing was first introduced by Albert Ellis and later developed by Aaron Beck as a distorted thinking pattern in patients with mental and emotional problems. Their description focused on expecting the worst-case scenario in a situation that was far from catastrophic.

4) The problems arise when catastrophizing is used in patients with a severe, chronic disease. In such cases, it is difficult to differentiate between the severity of symptoms and catastrophizing thoughts.

A chronic illness itself is often a catastrophe that affects all aspects of life.

5) The most used tool to measure catastrophizing is the Pain Catastrophizing Scale (PCS). It does not focus on pessimistic forecasts of future events but on how people feel and think when they are experiencing pain.

6) It includes statements such as ‘It is awful and I feel that it overwhelms me’, ‘I keep thinking about how much it hurts’, or ‘I feel I cannot stand it anymore’ which might reflect the intensity of pain rather than how patients think about it.

7) Other items such as ‘There is nothing I can do to reduce the intensity of the pain’ might indicate how well a patient’s pain is being managed or how (un)successful treatments have been.

8) This mix-up could explain why the PCS correlates strongly with negative pain outcomes. It does not only measure an unhelpful thought pattern but also pain intensity, worry, distress, (unsuccessful) pain management, and other factors that patients know but the researchers likely don’t.

9) Unfortunately, patients and caregivers pay the price for these errors.

Patient surveys indicate that the term catastrophizing is blaming and demeaning and that healthcare professionals use it to deny pain medication or suggest that patients are exaggerating their symptoms.

10) Some proposed to rename the term to make it less stigmatizing but the underlying issue appears to run much deeper. What needs to change is the concept of catastrophizing itself.

11) One step forward is that some researchers have argued that pain catastrophizing cannot be assessed by self-report questionnaires because it requires contextual information and expert judgment.

12) Lastly, research on ME/CFS shows that patients do not have abnormally high catastrophizing scores when compared with other illnesses that have similar fatigue or illness duration.

 

[ME/CFS Skeptic]

Would be interesting to hear other thoughts about this: are there parts in the text that you disagree with or that we overlooked?

There is some info that did not easily fit into the blog (otherwise it would be too long) and that I hope to post here in this thread in the coming days.

 

[ME/CFS Skeptic]

I think several forum members contributed to the Stanford project 'Rename Catastrophizing' from which I used several quotes. The project was posted in this thread:
https://www.s4me.info/threads/rename-pain-catastrophizing-stanford-study-survey.15337/

 

[Nightsong]

Another excellent blog. I could comment on the Ellis/Beck history but for now just a couple of other brief comments:

Researchers have used this passage as an example of catastrophizing because Maupassant appears overwhelmed by his pain and helpless to deal with it. But one could just as well argue that his thinking pattern is not distorted but an accurate

So many people don't understand that migraine is not just headache. Vertigo, nausea, (increased) sensory sensitivities, etc. Often you feel impelled to lie down or be completely still. To anyone who has experienced migraines de Maupassant's description is not catastrophising; it is simply accurate.

These statements could just as well reflect the intensity of pain rather than how patients think about it.

Yes - and, I think, not just the intensity; I wouldn't be surprised if the type of pain and the functional limitations it induces also matter. There's a great difference between the dull, occasionally twinging pain of an arthritic knee, a gnawing toothache, the full-body flu-like pain I get with PEM and a migraine. The context in which patients are given these questionnaires may also matter; as Dixon & other studies show, being in pain when the questionnaire is administered is a relevant factor & there may be others - I've noticed some studies are also likely affected by selection biases (patients referred to psychology-based pain clinics are probably more likely to be depressed, anxious or phobic).

As for the CBRQ subscale it is gibberish. Anyone who has experienced severe ME has undoubtedly thought about the possibility of being bedridden permanently. And I wonder if "I will never feel right again" might correlate in particular with illness duration; after nearly 20 years in it would be entirely rational for me to conclude that I may well have ME for the rest of my life. That's not "catastrophic" thinking; it's a simple acknowledgement of reality.

The problem is that like so many concepts in psychology these ideas become embedded without robust empirical support and the psychological profession evinces little interest in addressing their well-known replication crisis.

 

[Turtle]

Another very informing and well-written blog @ME/CFS Skeptic, much appreciated!

I have had ME/CFS for 33 years and I don't think there will be a cure during my lifetime.
I'm retired.
Catastrophizing? No, just realistic.

 

[Hoopoe]

Well written and argued.

People have great difficulty understanding subjective experiences that difer greatly from their own. In this instance, clinicians and researchers cannot comprehend or imagine how terrible chronic pain can be. They can't make sense of what they're seeing without pain catastrophizing.

I suspect this is just an instance of a recurring pattern also seen in other conditions, which could be described as: the subjective experience of patients differs too much from that of outside observers, so they must invent some character flaw to "explain" what they're seeing.

 

[ME/CFS Skeptic]

More info on catastrophizing and ME/CFS
That first study on catastrophizing in 1995 was done by Rona Moss Morris. She also developed the cognitive and behavioural responses to symptoms questionnaire (CBRQ) which is the tool that has been used to most to measure catastrophizing in ME/CFS patients as well as other psychosocial factors (it has 8 subscales). Both the FINE and the PACE trial used this questionnaire for their mediation analysis.

Interestingly, the questionnaire was developed in the early 2000 but the initial validation was not published until 2023. The data shown in this graph are from that validation study:

Source: The Cognitive and Behavioural Responses to Symptoms Questionnaire (CBRQ): Development, reliability and validity across several long‐term conditions - Picariello - 2023 - British Journal of Health Psychology - Wiley Online Library

Another study included data from trials that used the CBRQ, including in patients with CFS, QFS, multiple sclerosis and type-1 diabetes. Catastrophzing is the second subscale (Cat). The differences between type-1diabetes and the other illness are significant, the other comparisons weren't.



Source: The relation between cognitive-behavioural responses to symptoms in patients with long term medical conditions and the outcome of cognitive behavioural therapy for fatigue - A secondary analysis of four RCTs - PubMed (nih.gov)

Then there was that study that compared CFS to three rheumatic diseases. After adjustment for fatigue, CFS patients had lower scores on the catastrophizing subscale (without adjustment for fatigue they had slightly higher values).





Source: https://linkinghub.elsevier.com/retrieve/pii/S0022-3999(16)30481-0

 

[MrMagoo]

I really feel the problem here is the intense desire for there to be a problem. Where studies have been carried out, “catastrophizing” isn’t really found, or if it is, it’s not at a scale which is problematic. End of discussion. No further efforts required.

We can all access talking therapy these days if we feel we are in danger of overthinking our pain, otherwise the psychiatrists can standby until they’re needed and medics needn’t worry about it. Done and Done.

 

[bobbler]

Catastrophizing, time to ditch the term?
Catastrophizing, a cognitive distortion that amplifies the perceived threat of symptoms, has been at the center of cognitive-behavioral models of pain and fatigue. In recent years, however, researchers argued that the concept has been misapplied and that it has a stigmatizing effect on patients. While some propose to rename the term, the underlying issue appears to run much deeper.

Full article at: https://mecfsskeptic.com/catastrophizing-time-to-ditch-the-term/

Great you are doing this. It’s a yes, yes to this important persistent problem being flagged. And for me/cfs never more important as we will have to push post guideline for the inaccurate stuff to get properly repaired - like new versions calibrating any of these mental health concepts are needed for me/cfs because the old one was based on a very flawed model of cfs assuming it’s fatigue and flase beliefs and no PEM etc

the idea the illness doesn’t get worse with cumulative (or intense) exertion is a major correction that is number one that needs to be signed off. EDIT and then of course the more ill you are the lower that threshold is for either (cumulative or just a 'one-off' exertion making you worse)

and we can see the heel dragging on this with it often not even being touched on under the false excuses of toxic positivity charading as optimism

even more than then playing pretending they can’t understand or read in response to PEM.

but this points out how even on the fatigue poor fit of that front this is ‘loaded’ before any questions are even answered

My first question here was to look up Becks definition because yes I’m sure from memory that catastrophising as a real phenomenon which can be a subset in depression is quite obvious, distinct, hard to confuse when you see it with those who don’t - it’s nothing like the layperson use of the term.

I faintly remember examples in my course being that doing badly on one test gets met with ‘ill never be good at x, which means I’ll never get a job …’ and so on but it’s actually like quite a specific cascade of thinking that isn’t someone having a tantrum or a moment but is quite continual. A total step beyond what you might have seen in normal spectrum of people in daily life.

so yes the jump to the pain ‘nicked term/pseduo-version’ is a real issue. Even the 60s of having arms in ice water is flawed because there is Reynauld's but many other conditions that might often not being diagnosed by that point that would make that awful. Plus women or those with different body compositions might well be more susceptible due to temperature difference so it’s more of a drop . So how they assume it’s equal pain fir all just because the temp of the water is arbitrarily equal is just flawed understanding.

part if it really does come down to certain individuals having a problem understanding the concept of measuring. But it’s also a lack of curiosity because they want their simplistic ideas to pass, rather than test them to really refine them to get them ‘right’

it’s like a cheat isn’t it really to grab two people with greatly different luck or ability in life and pretend you don’t see the causal difference underlying anything is objective and want to control for it. That’s what normal scientific psychology would do and teach, methods to focus on 'measuring what you say you are trying to measure' (the research question) by layering out and controlling for other factors etc. So it’s weird they got away with it and got to build these without such critique - but that critique has a problem I’ve found because it seems to count for nothing if people are brazen enough to carry on regardless of what’s said in peer review etc and it isn’t part of that model being improved.

I’m curious to know which journals they were in and which areas would do such comment ie is it psychosomatic literature, medicine or a more scientific psychology. Of course it doesn’t help much of that literature was pretty late to the party on going online with journals vs eg business/computer science journals (and I don’t know how extensive including all response letters might be included in a retrospective archiving onto online databases) to be able to see that response process.

 

[bobbler]

More info on catastrophizing and ME/CFS
That first study on catastrophizing in 1995 was done by Rona Moss Morris. She also developed the cognitive and behavioural responses to symptoms questionnaire (CBRQ) which is the tool that has been used to most to measure catastrophizing in ME/CFS patients as well as other psychosocial factors (it has 8 subscales). Both the FINE and the PACE trial used this questionnaire for their mediation analysis.

Interestingly, the questionnaire was developed in the early 2000 but the initial validation was not published until 2023. The data shown in this graph are from that validation study:

Source: The Cognitive and Behavioural Responses to Symptoms Questionnaire (CBRQ): Development, reliability and validity across several long‐term conditions - Picariello - 2023 - British Journal of Health Psychology - Wiley Online Library

Another study included data from trials that used the CBRQ, including in patients with CFS, QFS, multiple sclerosis and type-1 diabetes. Catastrophzing is the second subscale (Cat). The differences between type-1diabetes and the other illness are significant, the other comparisons weren't.

View attachment 23083
View attachment 23084
Source: The relation between cognitive-behavioural responses to symptoms in patients with long term medical conditions and the outcome of cognitive behavioural therapy for fatigue - A secondary analysis of four RCTs - PubMed (nih.gov)

Then there was that study that compared CFS to three rheumatic diseases. After adjustment for fatigue, CFS patients had lower scores on the catastrophizing subscale (without adjustment for fatigue they had slightly higher values).

View attachment 23085

View attachment 23086

Source: https://linkinghub.elsevier.com/retrieve/pii/S0022-3999(16)30481-0

That last one really helps

Then there was that study that compared CFS to three rheumatic diseases. After adjustment for fatigue, CFS patients had lower scores on the catastrophizing subscale (without adjustment for fatigue they had slightly higher values).

I don’t get how it didn’t move forward and we are where we are because people were looking for and aware of the issue of methods that only did correlation with no attempt at understanding causation of that - and from what I’ve seen Rona miss Morris is one of the worst offenders at that. But it’s like what’s drummed in in all first years stats and project classes and you are supposed to pick up on it when reading the literature in the rest in psychology. So it’s weird this achieved what it did.

I mean is the literature able to self- analyse these issues if people or models who go forward regardless and work out whether it was the journal somehow being an area where no one out this basic criticism or an issue in the job environment where they were allowed to just ignore it and proceed regardless?

there is a side story here of where the way development of these models to further understanding by testing them to see what factors underlying etc was either a failure or undermined by some just testing whether it would show its teeth if they carried on regardless - how did these models get actually’employed’ ? How did we get to some others signing them off to be used so wholesale?

 

[bobbler]

Another weird flaw of the pain catastrophising ‘move’ is that in its proper definition some who has the proper catastrophising (subset of depression and very different and horrible bound thinking if you see it) they will find the Beck scale or measure of it the most accurate.

so you can’t measure felt pain or illness directly but you could measure do becks test on catastrophizing to measure that whilst calibrating questions to disability. And know they aren’t tending towards having that so the felt pain is what it is.

And where is the research testing the two to prove that real catastrophizing means more pain anyway?

these other things are really just nicking the word to cover up for meaning exaggerating/ ‘over sensitive’

but it wasn’t the most above board way you decide to test it if you genuinely thought what you were suggesting was a real thing , even from an academic literature perspective. You’d do the above. So unless im missing tests claiming they did that in some way it’s so hard to see how people didn’t question this ‘invention’ unless they just wanted it (the wishful thinking waive-through of performative ‘academic research’)?

there was never any need for these invented scales of pain catastrophizing - it wouldn’t change the treatment (as ‘pain’ catastrophic ing doesn’t exist)

some questions would need to be omitted or at least calibrated (if someone had dyslexia then the reading or maths stuff affecting their career could be real, just as you might as well take people at their words on their pain or what not in relation to comorbid conditions and exclude questions this might affect just for the sake of accuracy)

so it’s superfluous. Unless someone already had this according to proper implementation of Beck with adapted questions then they aren’t ‘catastrophising’ / don’t have that.

There is no such thing as it only being in defined areas. So someone thinks they are really clever and everything will go well but catastrophise their pain.

that’s not how it works.

so these pain of disability scales always were just a weird little disability propaganda

where calibration sheets fir the original that does measure it did need to be developed for those who might end up being tested fir comorbid mental health on the beck scale

Becks biggest flaw was not being fussy enough or foreseeing the need to protect the terms he came up with (CBT included) so non-versions couldn’t hide under them and be parasitic of the reputation of better stuff by hiding under a name that didn’t disallow those not doing proper methods to nick them.

 

[NelliePledge]

Great job @ME/CFS Skeptic thanks for spotlighting this issue

 

[Dolphin]

Well done again, @ME/CFS Skeptic .

Very minor typo: “But the problem appears to ly deeper than the name”. I have never seen “lie” spelt that way in English.

 

[MrMagoo]

If anything I’m weirdly optimistic. When some people say “he doesn’t know his own strength” I’m the opposite, I consistently fail to understand my own weakness. I don’t appreciate that I can’t do things. I put things off that I’m definitely going to get round to. I absolutely agree to attend more things than I can. I keep thinking I’ll get a job at some point, I can barely look after myself and my cat.

 

[Arnie Pye]

Patient surveys indicate that the term catastrophizing is blaming and demeaning and that healthcare professionals use it to deny pain medication or suggest that patients are exaggerating their symptoms.

I have always assumed that the blaming and demeaning about pain comes about because healthcare professionals think they would be better than me at dealing with the pain I have and they consider me to be weak and contemptible.

 

[Peter T]

If anything I’m weirdly optimistic. When some people say “he doesn’t know his own strength” I’m the opposite, I consistently fail to understand my own weakness. I don’t appreciate that I can’t do things. I put things off that I’m definitely going to get round to. I absolutely agree to attend more things than I can. I keep thinking I’ll get a job at some point, I can barely look after myself and my cat.

I agree I too have generally been over optimistic in relation to my ME. I have always assumed any deterioration is transient and that any improvement will be permanent. Over the 30 years of relapses and remissions, though each subsequent relapse has been worse and each subsequent remission slower and to a lower point of functioning, I have regarded deterioration as temporary and during remissions made my life more complicated by failing to allow for the so far inevitable next relapse.

For me I would argue that irrational optimism has caused me more practical problems than any catastrophization. It has taken me some twenty five years to accept, without some major scientific breakthrough, there is nothing I can do to escape this disease and accept that the odds are now that I will have this condition for the rest of my life.

Unfortunately the historic dominance of psychological theories, the irrational beliefs of researchers/clinicians in such as catastrophization, has delayed the likelihood of any major scientific breakthrough in ME and made it more unlikely that I will ever experience any effective treatment in what is left of my life.

[edited to correct minor typos]

 

[hibiscuswahine]

Great article, not much to add. Being a psychiatrist and I did practise CBT for some years, I can only add this from my experience with clients with mental health disorders and the many times I helped people negotiate the sudden change in their life from developing a major mental disorder, some arising from a event causing physical pain.

I didn't come across a lot of people with this cognitive distortion. The only people that I came across had a very severe anxiety disorder/major depression, or they had a chronic or acute psychosis and then their catastrophising arose from a delusion. It is a real psychological phenomena.

Applying a psychological term like catastrophising to an entire patient group is ridiculous. (which is why doing the same for all people with pain is ridiculous, as well).

Also to have a catastrophic thought is not catastrophising. Having a fear response to an unknown stimuli is normal and often life preserving. Some would say that considering all options around a situation, positive and negative, is healthy problem solving.

As previously said, by many others, having a realistic assessment of one's life and the ability to change it, is more useful in the long run as one prepares for various life possibilities.

But also many people with ME, went straight to "catastrophic" very severe ME and everyone with a chronic illness have had adverse things happen due to it, on many levels and add it all up, it is a catastrophe as per definition.

What I was taught, and there is literature that shows this, is that people that are pessimistic have a more realistic view on life than people who are optimistic. (unfortunately, therapists who only subscribe to the school of positive psychology but also one of the most popular theory in current day society, seem to have their own cognitive distortion that positive thinking is the "best" way of thinking, when many other schools of thinking would say otherwise).

People can be optimistic of themselves as a person, but pessimistic about their ability to control their illness (especially with ME when there are no known effective treatments and an illness that can flare up for no known reason or for some uncontrollable reason - infection, various environmental stressors (family, economic, random events etc), a new medical illness developing etc etc.

If I started catastophising and was physically paralysed by fear and anxiety, all the time, for no reason, I would consider myself having a problem, a mental health problem. If I didn't see it as a problem, that would be more of a problem, especially to my supports as I probably wouldn't be able to take care of myself. But I think I could work it out for myself without needing a therapist, but if not I might seek help from a psychologist but only one who was appropriately trained in chronic illness (especially stigmatised ones).

I had a suspected melanoma of my eye several years ago. The fear, anxiety and bouts of catastrophising was a lot more than getting a diagnosis of ME. I had a few bouts of catastrophising when the covid pandemic started. So did most of the world and was useful in stopping the pandemic - avoiding contact with others and taking preventative measures like mask wearing. Unfortunately, I have yet to come across a doctor who can tell me how to prevent a flare up in my ME. And if they thought they did, I would be highly sceptical.

With respect to ME and any chronic illness, a psychologist or psychiatrist who cannot appreciate the disability of an illness and the stigmatisation by others (including by their profession, society, family etc), they are incapable (and should not be doing) any therapy. Every person has a unique psychology based on their genetics and life experiences. A therapist should never assume anything. Although therapists have training to look at patterns of thinking, patterns of thinking can change with new information and experiences. Part of a therapist's training is to be aware of all the myriad of factors that makes up a person's psychology and to also understand the potential harm of a therapy on various levels.

Of course the whole premise behind CBT specifically ME/CFS is flawed and some in the profession of psychology are starting to look at this. I doubt we will have an apology anytime soon.

 

[ME/CFS Skeptic]

More info on catastrophizing and ME/CFS

There were also a couple of studies on catastrophizing by the research team of Jo Nijs. They have a background in pain research so that is probably why they had an interest in the concept.

In two of their studies, patients had to estimate how much fatigue they would have following stair climbing. They had to climb two floors of stairs (4× 8 steps, height/depth 19.5 cm) and then to descend to their starting position. If catastrophizing is important in ME/CFS, one would expect that patients anticipated the fatigue to be significantly worse than they actually experience after the stair climbing. But this was not the case. In the first study the patients almost perfectly estimated their fatigue while in the other they slightly underestimated it.



But because catastrophizing was (in one of the two studies) related to the duration of climbing, the authors interpreted this as follows:

"Before a physical activity, patients seem to assess how fatigued they will become and adjust the way they perform the activity accordingly."
​

Sources:
Influence of symptom expectancies on stair-climbing performance in chronic fatigue syndrome: effect of study context - PubMed (nih.gov)
Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing in chronic fatigue syndrome: an experimental study - PubMed (nih.gov)

 

[ME/CFS Skeptic]

Very minor typo: “But the problem appears to ly deeper than the name”. I have never seen “lie” spelt that way in English.

Thanks for spotting that.