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

In my experience, there is also a clear difference between "sleepiness-fatigue" and "no-energy fatigue" which I experience as part of my illness.

With sleepiness fatigue you can't keep your eyes open, tend to fall asleep, yawn, lose concentration etc. With this sleepiness-type of fatigue, a rush of adrenaline can make it all go away for a moment. Doing things helps to feel less tired (although eventually, you'll have to sleep).

It's different for no-energy fatigue where you can't push through and which seems to get worse if you try to do activities. This type of fatigue is more about a general feeling of being unwell, feeling sick and weak.
 
I'm suspicious of diagnoses based on self-reported symptoms and think they are even more unreliable than most people think.

I could emphasize different aspects of my fatigue and it coud easily lead to different diagnoses if one were to base a diagnosis around how fatigue is described even though the emphasis might just reflect which aspect bothered me most in the last few days (with other days being different), or how I heard others describe their fatigue.

It seems to more useful to recognize the limitations and try to find other things to base diagnoses on, like what actually happens when people try to do things.

My own benefit/harm responses to activity seem to follow an inverted U curve. The right amount is good, but it's easy to do too much and then it becomes harmful. If someone were to ask if me exercise is good and I didn't know my illness well yet I could easily respond yes it's good or no it's bad just depending on how much I did.

Something like a repeated hand grip strength test could be more reliable than anything self reported.
 
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Carolyn Wilshire said:
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.
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  1. Suppose you have two identical ME sufferers, but with just one difference - one of them also suffers from depression. Would the ME diagnosis for them both be the same, whatever the ME diagnostic criteria used? Or would the presence of depression influence the diagnosis?
  2. If in '1' the diagnosis would be largely unaffected, is it feasible (likely even?) that a non-trivial % of PACE participants also had accompanying depression? Possibly a similar % across all ME diagnoses?
  3. If someone is suffering from two different fatiguing illnesses, depression plus a physical one, then that person would be prone to two separate components of fatigue, one component from each illness. Those two fatigue components would presumably aggregate in some way, albeit not necessarily straight additive.
  4. If an intervention were to successfully treat the depression to some degree, then presumably the depression-instigated fatigue component would diminish, in which case the overall fatigue level would diminish in such a person.
  5. Given how life-impacting ME is, I find it hard to believe that a non-trivial % of PACE participants would not have had some degree of accompanying depression. And I suspect they could have been evenly distributed - similar % - across all PACE participants.
  6. In which case I'm still not yet convinced that some sort of "occupational therapy" component of PACE's CBT and GET interventions mightn't have inadvertently helped reduce any depression-induced fatigue component in CBT/GET participants who had accompanying depression.
  7. Given the CBT and GET arms demanded much more engagement from participants, then any occupational therapy effects would likely have been significantly more in those arms.
  8. Given that depression-instigated fatigue is much more related to a state of mind, then such a fatigue component would surely be far more responsive to self-reported outcomes?
  9. I've been very specific about the notion of more than one fatigue component in patients suffering from more than one fatiguing illness, because I think it is important to recognise and address such components individually, whilst recognising their aggregative effect.
 
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It would be interesting to study people who already suffered from clinical depression before getting ME. Would they recognise and perhaps give different names to the two different effects commonly called fatigue? I expect there are some here who could enlighten us with their experience, but I'm not asking anyone to talk about this if they are not comfortable doing so.

I have come across people who use running as a way of helping cope with depression. I can only imagine what a nightmare that would be to find the coping strategy cut off with running making the depression and ME sufferer physically ill.
 
Michiel Tack said:
No amount of adrenaline can make the 'no-energy fatigue' feeling go away while it's quite easy to do so for sleepiness-fatigue.
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This really crystallises what a nebulous and imprecise term "fatigue" is. And why the name Chronic Fatigue Syndrome is so loved (and indeed proposed) by the BPS crowd, imprecision and ambiguity being the hallmark of their bubble-science.
 
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My two twenty-something daughters suffer from both depression and fatigue caused by different issues - one has EDS and POTS and, I’m beginning to suspect, fibromyalgia, and the other one has fatigue as the result of a brain injury and brain surgery described to us by her neuro-oncologist as “neuro fatigue” something apparently very common with traumatic brain injury. We have discussed this very issue several times between the three of us while my girls were teaching me about depression and how it feels. Both of them exhibit “physical” fatigue patterns very similar to mine (I have severe ME) where they will suddenly run out of energy and need to rest, they both try and pace themselves as I do, although the one with the brain injury can manage much more physically than me. However, she also exhibits the same sort of cognitive deficits I do -for her, sensory overload and language and memory, (mostly talking to people and having to remember things as her working memory is badly affected), are the things that drain her energy quicker than anything else and can take her days to recover from.

Both of them say that depression fatigue is completely different, it’s not only the lack of motivation but also he lack of caring about what happens to you and it’s all-encompassing, where everything feels like it’s just too much effort and just trying to decide where to start with a job or activity is overwhelming for them. In contrast, the more physical-condition-related fatigue is much more about not having enough energy either to start with or because it just runs out while you’re in the middle of something, having enough energy to do the things you want or need to do, and in consequence is much more frustrating to deal with because the motivation to do it is there, the will to do it is there, it’s just the lack of or loss of energy prevents you.

I am very lucky in that I don’t suffer from depression, so I only get the usual ME fatigue and PEM (even though I’m severely ill) and not the awful all-encompassing lethargy and can’t-cope-with-the-world despairing fatigue that my poor children have to deal with.
 
Barry said:
  1. Suppose you have two identical ME sufferers, but with just one difference - one of them also suffers from depression. Would the ME diagnosis for them both be the same, whatever the ME diagnostic criteria used? Or would the presence of depression influence the diagnosis?
  2. If in '1' the diagnosis would be largely unaffected, is it feasible (likely even?) that a non-trivial % of PACE participants also had accompanying depression? Possibly a similar % across all ME diagnoses?
  3. If someone is suffering from two different fatiguing illnesses, depression plus a physical one, then that person would be prone to two separate components of fatigue, one component from each illness. Those two fatigue components would presumably aggregate in some way, albeit not necessarily straight additive.
  4. If an intervention were to successfully treat the depression to some degree, then presumably the depression-instigated fatigue component would diminish, in which case the overall fatigue level would diminish in such a person.
  5. Given how life-impacting ME is, I find it hard to believe that a non-trivial % of PACE participants would not have had some degree of accompanying depression. And I suspect they could have been evenly distributed - similar % - across all PACE participants.
  6. In which case I'm still not yet convinced that some sort of "occupational therapy" component of PACE's CBT and GET interventions mightn't have inadvertently helped reduce any depression-induced fatigue component in CBT/GET participants who had accompanying depression.
  7. Given the CBT and GET arms demanded much more engagement from participants, then any occupational therapy effects would likely have been significantly more in those arms.
  8. Given that depression-instigated fatigue is much more related to a state of mind, then such a fatigue component would surely be far more responsive to self-reported outcomes?
  9. I've been very specific about the notion of more than one fatigue component in patients suffering from more than one fatiguing illness, because I think it is important to recognise and address such components individually, whilst recognising their aggregative effect.
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You make a pretty convincing argument there, @Barry

But what if genuine clinical depression - the type that might respond to an exercise intervention - is actually quite rare?

I often think that clinical depression gets mixed up with other types of negative feelings, such as grief, unhappiness, sadness, feeling helpless, desperate, etc. And that most PwMEs have those other things, not clinical depression. People I've known with clinical depression talk about something that's really foreign to me. A gut-wrenching, clawing hollowness or despair that totally encompasses you and affects everything you do.

In general, I worry about the slow creep we have where psychological diagnoses become looser and wider over time, so they start to pathologise all sorts of entirely unpleasant but normal states of mind.
 
Trish said:
It would be interesting to study people who already suffered from clinical depression before getting ME. Would they recognise and perhaps give different names to the two different effects commonly called fatigue? I expect there are some here who could enlighten us with their experience, but I'm not asking anyone to talk about this if they are not comfortable doing so.

I have come across people who use running as a way of helping cope with depression. I can only imagine what a nightmare that would be to find the coping strategy cut off with running making the depression and ME sufferer physically ill.
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Interesting thought, @Trish.
 
Blueskytoo said:
Both of them say that depression fatigue is completely different, it’s not only the lack of motivation but also he lack of caring about what happens to you and it’s all-encompassing, where everything feels like it’s just too much effort and just trying to decide where to start with a job or activity is overwhelming for them. In contrast, the more physical-condition-related fatigue is much more about not having enough energy either to start with or because it just runs out while you’re in the middle of something, having enough energy to do the things you want or need to do, and in consequence is much more frustrating to deal with because the motivation to do it is there, the will to do it is there, it’s just the lack of or loss of energy prevents you.
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Oh, sorry, just read this @Blueskytoo, that's a much better description than I could give.
 
It doesn't help that doctors use depression as a waste basket diagnosis for any unexplained fatigue, pain, or sleep disorders.

I was misdiagnosed with depression for 6 years, then misdiagnosed with fibromyalgia, then finally got a diagnosis of CFS (It ought to say ME but most doctors don't recognise ME).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1031831/?page=7 - Wessely says there's considerable overlap between CFS and depression. He likes to depict CFS as an inconsequencial mental disorder. He does it covertly through implying certain things, however he never directly says PEM (and lowering of PEM threshold) isn't real. He then conflates CFS with ME. He also goes out of his way to say ME is not hysteria, malingering, etc, even though that's not the impression I get when I read his and his colleague's research.

This confusion has caused great harm for patients.
 
Carolyn Wilshire said:
But what if genuine clinical depression - the type that might respond to an exercise intervention - is actually quite rare?
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Yes, I'm sure that real deep clinical depression will be pretty rare; I doubt such cases would have made it though the PACE screening anyway. But ...

I well understand what deep clinical depression is, having witnessed it myself over many years. I also fully appreciate that "feeling down, feeling rather depressed" is a completely different experience to clinical depression. But I suspect there is a more common form of depression, in between these two, borne of ongoing inescapable life conditions. The prevalence of this kind of depression will of course be higher amongst those groups of people experiencing such life impacting conditions. I'm sure there will be a depression-induced 'fatigue' component for people in this situation. I very much doubt that all 641 PACE participants were completely immune from some degree of depression-induced motivational 'fatigue' due to their adverse life situation; you don't have to be deeply clinically depressed to experience that.

And I was talking about Occupational Therapy (OT) not exercise therapy; OT is no way necessarily the same as exercise therapy, though it might include it. Depression is a very self-absorbing state of mind, and OT is about getting a patient to occupy their thoughts elsewhere, outside of their own introversion. So OT can take many different forms, not just exercise - art, craft, music, group activities, etc. Just the very act of being engaged with something and people outside of their own self. A clinical trial such as PACE, with CBT and GET arms, intrinsically provides - as a side effect - such OT interaction for participants, as might anything else that got them involved in something that was about them, in conjunction with others. Any participants (a significant minority perhaps) with non-trivial illness-induced depression would I think have been liable to a fatigue component that might well have been relieved simply by having something to take them outside of themselves. Indeed the very act of filling in a questionnaire might have acted as a form of OT.
 
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DigitalDrifter said:
It doesn't help that doctors use depression as a waste basket diagnosis for any unexplained fatigue, pain, or sleep disorders.

I was misdiagnosed with depression for 6 years, then misdiagnosed with fibromyalgia, then finally got a diagnosis of CFS (It ought to say ME but most doctors don't recognise ME).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1031831/?page=7 - Wessely says there's considerable overlap between CFS and depression. He likes to depict CFS as an inconsequencial mental disorder. He does it covertly through implying certain things, however he never directly says PEM (and lowering of PEM threshold) isn't real. He then conflates CFS with ME. He also goes out of his way to say ME is not hysteria, malingering, etc, even though that's not the impression I get when I read his and his colleague's research.

This confusion has caused great harm for patients.
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Yes, the very name Chronic Fatigue Syndrome was created by BPS zealots borne of their own expectation bias, because it was a perfect fit with the imaginary condition they presumed it to be, and with the interventions they presumed would fix it. Talk about false illness beliefs!
 
Carolyn Wilshire said:
In general, I worry about the slow creep we have where psychological diagnoses become looser and wider over time, so they start to pathologise all sorts of entirely unpleasant but normal states of mind.
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yes and unfortunately this approach is being actively encouraged. Not just for medical professionals but also others who come into contact with disabled/sick people (eg benefit assessors), also those involved with the unemployed, and teachers.

In the UK in particular the big campaign supposedly for parity between mental health and physical health issues has lead to an unbalanced situation with suspected mental health issues being queried/suggested often before any investigations into potential physical illness have taken place. Plus, quite natural fears or anxieties when someone develops worrying symptoms and seeks a diagnosis from their GP then get recorded as 'anxiety' or 'depression'.
 
Carolyn Wilshire said:
In general, I worry about the slow creep we have where psychological diagnoses become looser and wider over time, so they start to pathologise all sorts of entirely unpleasant but normal states of mind.
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Yes, psychology (or at least the BPS 'wing' of it) seems to have this empire-expanding land-grab culture, and part of that seems to be classifying anything possible to fall within their self-claimed remit. It's really very ugly.
 
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