Symptom descriptions in psychopathology: How well are they working for us? (2020) Wilshire et al

Hi all,

I'd like to share with you a new theoretical piece I've written with Tony Ward, and our terrific PhD student, Sam Clack (pdf attached).

It is a pretty dense piece, about what symptoms are in psychiatry, and not of general relevance to MECFS. But I'd love your input on the bit I've quoted below, and whether you think this might be a useful approach to use for delineating symptoms in ME from superficially similar ones in things like depression.

We don't mention ME in the paper, and the example below is on fatigue, but I did wonder if there are some ideas here that could be followed up.

I'm in a position to collect data too.

Thoughts, anyone?

Edit: The piece in now in press at Clinical Psychological Sciences.

Reference:
Wilshire, C. E., Ward, T., & Clack, S. (2020). Symptom descriptions in psychopathology: How well are they working for us? Clinical Psychological Sciences, in press.

 

Great piece. Interesting.

Although I know the piece isn't about ME and I didn't check the references about the cardiopulmonary exercise testing thoroughly I definitely wouldn't mind having a CPET study about ME added into that mix as well.

Knoop et al. love lumping fatigue together to some degree so they can apply a transdiagnostic fatigue-approach which is in my opinion very unhelpful.

https://psycnet.apa.org/record/2018-23402-001

A 2 day CPET about ME would be of great help to get people to understand the differences in types of fatigue.

 

Not looked at paper, just the excerpt you quoted @Carolyn Wilshire and asked for comments on.

"This rich description approach to symptoms will not only shed light on the nature of the symptoms themselves, but will also help to identify whether a given symptom description constitutes a coherent phenomenon or whether it fractionates into a number of distinctly different phenomena with different etiologies."

I would think this to be a promising and powerful approach, but as with anything powerful, prone to abuse as well as use. Sounds to me like it is saying (please correct me if I'm mistaken) to start out by gathering as much potentially relevant information as possible, physiological, psychological, environmental, etc. And to do this with an open mind, with minimal preconceptions, thereby not inadvertently filtering out information that might only later prove critical for downstream diagnostics.

"one possible next step might be to examine the impact of mental and or physical exertion on individuals’ physical performance, using techniques such as cardiopulmonary exercise testing (see e.g., Donath et al., 2010; Neil et al., 2013; Vigo et al., 2015). Such a method might help to tease apart fatigue associated with fatiguability following exertion, from fatigue associated with a feeling of more general heaviness and lassitude."

I think the last sentence is particularly salient. I think also, given the rich description approach here, that there is a key discriminator that is mentioned in various places elsewhere, of the distinctly different responses given by pwME versus people with depression to the question "What would you like to be able to do?" I imagine that most people suffering severe fatigue who are not depressed, will typically reel off all sorts of things they would love to be able to do, whereas a key signature of people suffering from depression is a sense of apathy, and not really wanting to do anything.

It must of course get much more confusing with people suffering from a fatiguing physiological condition who are also suffering from consequential depression. If there is a way to identify those two components independently and their causal relationship, within the one patient, that would be a major advance.

The most difficult situation is presumably were someone genuinely does suffer from true clinical depression, but also some other genuinely fatiguing physiological condition. Teasing that apart without physical biomarkers is probably very tricky, and I presume outside the scope of your paper.

Essentially, whenever symptoms described during a psychological session indicate a potential physiological problem, it is surely unprofessional in the extreme to not pursue with relevant physical testing?

 

this thread might be of interest.
https://www.s4me.info/threads/symptom-survey-for-those-with-me-cfs.3720/page-4#post-66728
I haven't read your paper yet.
But something occured to me when reading about the sf-36 (see following thread)
https://www.s4me.info/threads/does-your-sf-36-physical-score-match-your-mecfs-level.16467/
that very little is assessed in terms of how long for or how often pwME can perform said activities for,
and there is no guidance on interpretation with regards to fluctuating energy levels.

this distinction I find troubling
see
https://www.s4me.info/threads/heaviness-could-it-be-used-as-a-measurement.7247/#post-129367

It could also be argued that someone with depression might report symptoms like fatigue more negatively because of their mood. So I don't think it is a 'level playing field' for comparison.

 

I don't think the problems to approaching symptoms are technical, the problems are inherently human. It's not simply a matter of doing some thing or another better when there are people in this field who weaponize ambiguity to promote their personal beliefs and ideology, a practice that has been ongoing for well over 150 years, normalized and seen as valid and good.

It takes a high level of empathy to understand patients' description of symptoms and relate to them in a meaningful way. I can't say generically in health and clinical psychology, but in the specific example of the ME ideologues and their approach to the disease, those people have no empathy at all, are completely incapable of understanding other people's perspective, but they are absolutely convinced otherwise. Empathy can't be taught, evaluated or improved upon. People have it or they don't and it's too nebulous to ensure this in practice. But there's no meaningful way to disqualify someone who lacks those skills from studying and practicing them. Just the same, these people completely lack in common sense, yet genuinely believe that they are paragons of common sense, which can't be taught or evaluated either.

With people like the BPS brigade, there is no technical change that will fix their complete inability to understand and integrate patients' reports of symptoms, they are fundamentally incapable of doing that, the same way an amusical person simply cannot learn music. It's like a telephone game where the very first person to hear the message has no intention of repeating the original message, their intent is to send an entirely different one of their own. It may have something to do with the original message, but more often than not they don't.

In the BPS ideology, when it comes to MUS in general and ME specifically, the "thought leaders" don't say what they mean and don't mean what they say. They have an agenda and prior beliefs that are impervious to real life circumstances. When a patient presents with facts that dispute their worldview, they simply reject those facts, they simply don't think they have anything to learn from experience. There is no getting through people like that and the flaws in this system are as fundamental as having corrupt politicians fix the corruption that allows them to thrive, it's contrary to their self-interest.

There is simply no relation between what we experience and report and what the BPS model of MUS/ME/FND/Whatever uses in practice. This is not a technical failing, it is their personal failing and the system of medicine, especially EBM, rewards this type of behavior when it comes to keeping alive the fantasy of psychosomatic explanations to pre-breakthrough disease.

The fact that the modern descriptions of MUS/ME/FND are identical to the before-breakthrough psychosomatic descriptions of peptic ulcers, MS, asthma and a host of other diseases shows that reality plays no role in the worldview of many. They have simply recycled the same insubstantial mess onto a different population without any afterthought, let alone any relation to the actual illness experience.

I don't know if you've seen the Star Trek: the next generation episode Darmok, where Picard encounters a society that does not speak in direct language, making the translator unworkable. They only speak in metaphors and in order to understand their meaning the listener has to make an active effort of genuinely trying to understand the true meaning of their words, validate the various metaphors and reach a shared understanding.

Again going back to the BPS brigade, they don't actually care about the true meaning of our words, make no effort to correct their prejudices and place entirely different words in our mouths. When they say fatigue, they don't mean the same thing we mean. When we say it's so much more than fatigue, I frankly don't even know what they think. There is no technical fix for this, it's a human failing, one that goes back too long for a quick fix.

The solutions to this failure are much more fundamental than adopting a different technical approach. Where ideology dominates some people's worldview, there is no technical solution that will counter that massive flaw in the system, it's rot from within. I don't think this can be resolved without significant patient engagement at all levels, at every junction, in every function and in such a way that gives real power to patients in correcting invalid thought processes that come from unaccountable people working in an unresponsive system.

We are trying to explain the color red to people who have never seen in their life. Some have the right imagination, some simply reject the very idea that color is a real thing. Which has technical truth to it, color is a cognitive interpretation of light, but sometimes technically true is the worst kind of truth.

 

Interesting thoughts, everyone. Thanks for taking the time to reply.

This is a really nice way of thinking about it, @Trish. I also think the time course of fatigue might help delineate different types of experiences - so for example, people with depression often complain of lassitude, which is a feeling of overwhelming fatigue related to starting a new task (cognitive or physical), whereas those with fatigue connected to physical illness talk about fatigue increasing as activity proceeds and/or kicking in after activity has concluded.

People with fatigue connected to physical illness also talk more often of the need for rest during and afterwards, which is not a strong theme in the narratives of people with depression.

Of course I'm interested in how all this relates to ME, but I used cancer fatigue in the paper because there were so many rich examples of patient narratives.

So we have:

Factors shaping the experience over time. In depression, the subjective experience of fatigue seems to peak prior to the commencement of a new task or activity. In physical fatigue (ME, cancer), the experience either increases during the course of the task/activity (fatiguability), or follows some time after conclusion of the activity.

Need for rest: Those with physical fatigue commonly mention a need for increased rest during or after activities, but those with depression do not commonly mention this.

Fluctuation versus constancy: @Slysaint and some others in that thread mention that fatigue in ME fluctuates greatly from day to day and even hour to hour. For me, this degree of fluctuation runs counter to a depressed mood hypothesis. Constructs like major depressive disorder are not compatible with such massive fluctuation.

I know a lot of the ME experience is not about fatigue per se, but about other types of symptoms that are exacerbated following activity. But if we could just get the fatigue thing sorted out, everyone would be better off. And I mean everyone. We wouldn't end up with these ridiculous stats that over three quarters of people over 75 are clinically depressed and needing psychological interventions.

Thanks for the link to the thread, @Sly Saint.

Yes, I've vaguely thought about the counterargument to all this: that the experience itself is the same, but the reporting is different depending on the diagnosis. One scenario is that what differs is people's attributions, not their underlying experience - people with cancer attribute their fatigue to their bodies and so describe it accordingly, whereas people with depression attribute to their emotional state so describe their fatigue accordingly.

Another scenario is that the experience itself changes as a function of the person's mental state, which is maybe closer to what you're suggesting: the depressed person's experience of fatigue is overlaid by their intensely negative mood state. This scenario is a bit different from the one above, because it proposes the actual experience changes as a function of diagnosis, not just the way it is reported/described.

.

 

PS @Sly Saint, I just read your post about heaviness. I think this is qualitatively different from what people with severe depression report, because your description is very much linked to the body, and to the specifics of actions (e.g., how heavy your limbs and the duvet feel when you try to lift it). Some of the descriptions I've read from people with depression that talk about heaviness do not link it to particular movements or parts of the body, but describe it as a much more all-encompassing experience, like they're drowning in a sea of crushing mental inertia.

 

Although this goes beyond the experience of the fatigue itself, its hugely important, and shows how our use of symptom checklists for diagnosing things like depression falls short of measuring a genuine coherent underlying construct.

 

@rvallee, I agree with all of what you say. I've had some direct encounters with the UK proponents of the psychosocial model of MECFS, and I know for many, no amount of inconsistent evidence or rational argument will ever change their views. The best that researchers like me can hope to do is to suggest a different way forward for those whose minds aren't made up yet.

 

Great reference @Grigor. Thanks so much for sending it my way!

 

These are really interesting discriminators which I'd never really thought of. My wife has ME and my mother suffered from severe depression, and those comparison ring very true.

I think with depression the sense of fatigue is provoked due to lack of motivation to do something in the first place, so makes sense it would kick in beforehand. And very much true from my observations. It's a long time ago now, so it's hard to remember, but I think that with someone who is depressed, if they do actually get started on something, then in some cases they will if anything feel less fatigued once they get into something - the occupational therapy factor kicking in. In my wife's case the motivation is way ahead of her physical capabilities, but being mild/moderate, can proceed fairly well in stop/start mode.

Absolutely. My wife often does herself right in and has to just collapse basically, in order to recover some degree of mobility again. And for my wife she seems to benefit from short/frequent rest intervals, in such a way that it becomes part of her workflow, albeit it is invariably a declining trend and eventually ends up in aforementioned collapse-mode (by which I mean she would likely collapse if unable to get to a seat). It means my wife has adapted what she does and how she does it to embody this stop/start mode into her activities, and to choose them accordingly. She loves gardening, and gardening is a natural for this. As is walking and photography. This is part and parcel of how she paces.

 

I forgot to post the link.
https://www.s4me.info/threads/symptom-survey-for-those-with-me-cfs.3720/page-4#post-66728

which is why I think it is unwise to make comparisons of language used out of context.
Something else is that (and I'm only speaking from personal experience and knowing people with clinical depression, I have no qualifications in this area) generally people seem to use/repeat the language that is 'given' to them with regards to their symptoms, and certain descriptions get appropriated (again out of context) simply because they are used more.
An example of this is 'brainfog' which twenty years ago was used by pwME to describe their 'head full of cotton wool' etc cognitive disfunction. This term is now widely used by others who don't have ME but we have no way of knowing if it is the same thing as originally intended.

I will have a go at reading your paper.
Sorry if anything I've said is already covered there.

eta: just thought I should clarify; I haven't had depression myself, but I know people who have.

 

Needless to say it would be unwise to just rely on my say so for this @Carolyn Wilshire!

Pondering further on my own comment. Note I've only skimmed-and-dipped your full paper, so apologies if you have already mentioned this and I missed it.

I suspect there could be mileage looking into any studies done on occupational therapy for depression, in the context of reported fatigue and its timings. If my above quote is valid, then there may be some useful references to be found.

In the process of looking into this there may also be one or two other useful things turn up.

It also occurred to me that if there is reliable evidence that people with depression exhibit lower levels of self reported fatigue following occupational therapy, then that could have implications for PACE etc, where the inclusion criteria potentially included people with depression, be it primary or secondary. The very process of PACE (etc.) could possibly share similarities with occupational therapy. It could also maybe shed further light on the blinkered mindset of the PACE authors etc.

ETA: I realise you effectively did say that depressive patients exhibit less fatigue after commencement of a task, when you stated that their fatigue peaks before commencement.

 

Yes, I do agree a possible trap for the unwary. Language evolves significantly over time, and also across knowledge domains, as well as just for individuals. My wife uses the expression "sooooo tired", when she means totally done in, whereas many pwME - many on this forum - feel that people who use the word "tired" cannot have ME and don't understand. But what that misses is that even at the level of an individual or small group, their language evolves in ways as they evolve through their illness.

 

I'm not convinced that we'll ever have any sort of clinical clarity, given that people use such words to describe very different things, however I see the objective outcomes as augmenting the descriptions of experiences by patients.

This is an interesting point. The differing conceptions of the relationships between the symptoms and the illness directly inform how they are treated in research and clinical practise (Table 1 is interesting). It bothers me that almost no one bothers to consider this when designing or selecting self report questionnaires (or the structural/network modelling for that matter). I wonder how many researchers asked themselves "why are we using a questionnaire in the first place?"


Aside, on the topic of fatigue itself:

From my personal perspective, mental tiredness/sleepiness is not fatigue, pain or a sense of stiffness, headache, or other symptoms that often warn of fatigability is not fatigue. Similarly, task failure (the point at which you give up on a task) itself is not fatigue. That "blah" feeling/lack of motivation or "spark" when feeling depressed is not fatigue. CFS patients as such, do not experience fatigue at rest.

Physical Fatigue is when you experience unexpected weakness and have to increase effort to compensate to maintain the same performance. Mental fatigue is related to this, namely your mental performance falls short of what you expect (given your lifelong experience), and requires additional effort to maintain concentration and level of performance. Notably, this level of extra effort is not constant and increases with duration (and intensity) of performance. Otherwise perceptually, you'd simply adjust to a "new normal". Importantly, our sense of effort is not altered by peripheral feedback, however our reporting of effort on a questionnaire can be altered through metacognition, but this is usually just the baseline level of effort and the rate of change of reported effort tends to be resistant to metacognitive bias...

 

When your body won't let you do activities because of its lack basic energy, that is completely different from not being able (due to depression) to will yourself out of the house, etc. You don't want to go out with depression.

With ME you want to go out of house, desperately, but your body won't allow it.

I was depressed (mild) for ten years at not being able to work due to fibromyalgia fatigue (Venn diagram with mild ME) and pain. The psychiatrist I was forced to see if I wanted a prescription of a valium derivative drug to use in severe flare ups to ramp down the central nervous system and symptoms, said to me:

"If your body won't let you work, you can't work."

Big difference here between body allowing you to do activities and fatigue of depression.

I think fatigue in depression is important as a marker of improvement or worsening. Yes, it may be useful to suggest more activity to a depressed person. However, depression is more complicated than mere activity.

 

That's an important point, @Sly Saint. We need to be wary of hanging too much on specific keywords, which as you say can be acquired through various sources that are likely to differ according to the condition. Most narrative approaches look for themes, rather than keywords, so not looking at "heaviness" or "brain fog" per se, but narratives that follow particular themes. But the general point still holds.

And having said that, there are probably other more generic and more subtle "shaping" effects that can occur when people engage in discussion with others about their symptoms. A person who experiences their thinking as if it were a dialogue in their head might find the experience helpful or even comforting, but then after discussion with others (especially professionals) may reconstruct it as a negative thing that is to be feared and if possible, prevented. The Cambridge model, which we talk about in the paper, very specifically mentions this type of shaping effect. They argue there's no such thing as a "raw" symptom experience, its always shaped by thoughts and by interactions with others.

I think the narrative analysis approach is only ever a way to generate hypotheses, which you then want to test using other methods.

 

The weird thing about PACE is that the effects observed on self-reported measures did not seem to differ much depending on whether you considered the sample as a whole, or whether you selected out those who met stricter ME criteria. I don't think the interventions genuinely worked for anyone really. Maybe that's because people with genuine depression are misdiagnosed with CFS much less often that we think. Or maybe its because this stuff doesn't work for anyone.

Another possibility - that @Barry and @shak8 have mentioned above - is that people with depression may be far less motivated to get back into living (because, well, they're depressed), so recruitment of participants for these studies self-selects for those that don't have clinical depression.

 

Fair point. It seems to me that medicine often imposes the term fatigue onto people who wouldn't otherwise use it, because it divides up unexplained self-reported symptoms into two categories - if its not pain, its fatigue. That's pretty much the end of it. You can't function, but you don't have pain (or any other dysfunction that could explain your problem), well, that's fatigue isn't it?

I've seen discussions here on S4ME about fatigue and some people feel the term captures something of their experience even at rest (although a very fluctuating experience at that) and others consider the word not useful in capturing what they feel, which is better described in terms of specific symptoms like headache, brain fog, etc, or in specific limits that they need to observe to avoid PEM on particular days.

The part that interests me is not what word people use, but in teasing apart the very distinctly different experiences of people with depression and those with chronic illness, so that they are not concatenated. Which creates all sorts of spurious associations - leading us to conclude stupid things, like that the majority of chronically ill people are clinically depressed, and also most elderly people. In general, I'm unhappy with the way the concept of depression has expanded way beyond its limits, to cover a range of negative experiences that have nothing to do with psychopathology. I'm unhappy that the experiences of people with ME, cancer, MS, and all sorts of other conditions are being inappropriately psychologised.