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

[Mithriel]

Before CFS was invented, fatigue was not terribly prominent when people talked about their illness. It was done in the same way MS people talk about, a troublesome side issue but not the main problem which was the abnormal response to exercise.

Then it was CFS and everyone was talking about fatigue as the important thing. Now, either the symptoms changed or being told that what you felt was fatigue made you consider it from that angle where I had never thought what I experienced as fatigue. Despite being very limited after decades of illness I still feel able to do anything until I try it the biggest difference from the early days is how soon I am forced to stop.

 

[Carolyn Wilshire]

psychology (or at least the BPS 'wing' of it) seems to have this empire-expanding land-grab culture

 

[Carolyn Wilshire]

Before CFS was invented, fatigue was not terribly prominent when people talked about their illness. It was done in the same way MS people talk about, a troublesome side issue but not the main problem which was the abnormal response to exercise.

Then it was CFS and everyone was talking about fatigue as the important thing. Now, either the symptoms changed or being told that what you felt was fatigue made you consider it from that angle where I had never thought what I experienced as fatigue. Despite being very limited after decades of illness I still feel able to do anything until I try it the biggest difference from the early days is how soon I am forced to stop.

Hmmm. If I had any skill at all in narrative analysis, I'd take a wide and diverse sample of people with all kinds of choric illnesses - including ones formally diagnosed as psychiatric - and ask them to describe their experience in depth. Then sort it all into themes irrespective of diagnosis.

I know, that's by no means perfect. But maybe it would be a start? If nothing else, it could demonstrate to others what people on this forum already kind of know...

 

[Sly Saint]

fatigue was not terribly prominent when people talked about their illness

true; I remember telling my GP (and others) about these 'weird' symptoms I had started to experience.
Fatigue or being tired was not one of them.
Not being able to stand up, or walk or lift a carton of milk for no apparent reason, yes, but 'fatigue'(?)

 

[Sly Saint]

Hmmm. If I had any skill at all in narrative analysis, I'd take a wide and diverse sample of people with all kinds of choric illnesses - including ones formally diagnosed as psychiatric - and ask them to describe their experience in depth. Then sort it all into themes irrespective of diagnosis.

I know, that's by no means perfect. But maybe it would be a start? If nothing else, it could demonstrate to others what people on this forum already kind of know...

don't know if you read this paper from Crawley
https://www.s4me.info/threads/can-l...jones-loades-crawley-et-al-dec-15-2019.12856/

 

[rvallee]

don't know if you read this paper from Crawley
https://www.s4me.info/threads/can-l...jones-loades-crawley-et-al-dec-15-2019.12856/

Ironically the only actual factors originating from the patients themselves were loudly and clearly: virus and/or infection. All the other topics are the ones brought by the BPS ideologues themselves.

 

[ME/CFS Skeptic]

Haven't read this study but thought it might be relevant:

Whitehead et al. 2016. The Experience of Fatigue Across Long-Term Conditions: A Qualitative Meta-Synthesis.
https://www.sciencedirect.com/science/article/pii/S0885392416301063

 

[shak8]

Haven't read this study but thought it might be relevant:

Whitehead et al. 2016. The Experience of Fatigue Across Long-Term Conditions: A Qualitative Meta-Synthesis.
https://www.sciencedirect.com/science/article/pii/S0885392416301063

Perhaps not so relevant. The literature review states "The diagnosis of chronic fatigue syndrome/myalgic encephalomyelitis was not included where the fatigue is the primary symptom and is necessarily severe and debilitating to reach diagnostic criteria.8".

 

[Carolyn Wilshire]

Haven't read this study but thought it might be relevant:

Whitehead et al. 2016. The Experience of Fatigue Across Long-Term Conditions: A Qualitative Meta-Synthesis.
https://www.sciencedirect.com/science/article/pii/S0885392416301063

Great find, @Michiel Tack, Thank you!

"The diagnosis of chronic fatigue syndrome/myalgic encephalomyelitis was not included where the fatigue is the primary symptom and is necessarily severe and debilitating to reach diagnostic criteria.8".

Yes, I see its mainly post-stroke fatigue and cancer-related fatigue, but there are some fibromyalgia people some autoimmune people and someone with HIV. Some of the variables they tried to look at are interesting - time course (experience intensity, trajectory - constant or intermittent - and predictability). The researchers claimed they had found a lot of differences between cancer-related fatigue and post-stroke fatigue, but the data they present doesn't persuade me on that point.

One limitation was that they seem to have organised the entire study around a single key word ("fatigue"), so a huge contributor is what people think the word means and whether it applies to them. It would be good to go broader, look at different terms that people use to describe sensations when unprompted.

Taking a look at the Crawley study now.

 

[Evergreen]

I thought this blog post written by someone with both depression (pre-ME/CFS) and ME/CFS was interesting. After explaining how any exertion affects her ME/CFS, she then explains when she does and doesn't find exercise helpful regarding her depression:

Depression - When I am not in a Depressive episode I love walking especially in natural settings and I find it to be a hugely important preventative measure - as good as antidepressants for me. In the depths of a Depressive episode I cannot motivate myself to get up and go out. I know from experience that putting pressure on myself to get up is counter-productive and will prolong and probably deepen the Depression. For me, the fastest way through an episode is to mind myself and surf the feelings. Allow them to be and remain aware they are just thoughts and feelings and they will pass. There comes a point in an episode when I know I’m coming out of it and it is sometimes helpful then to get out and walk a little to speed up recovery.[my bolding & underlining]

Full blog post here https://www.imet.ie/imet_documents/how-i-know-mecfs-is-physical.pdf

So for her, exercise is helpful before and after a depressive episode, but not during. (Although the active ingredient could be the exposure to nature rather than exercise, but let's say it's the exercise.) I think we have to be careful not to assume that exercise is globally helpful for depression - we might be just as critical of the evidence base there if we got to look at it closely, or the true picture may be more nuanced, as it is for Una.