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Hi all, my talk on PACE ran yesterday (Fri March 26) at Vic Uni, to a packed audience (well, it was a small room..). Will post a link to the recording here as soon as I have it.

Hi all, for anyone around the Wellington region who has the spoons to travel to Vic Uni, and listen to an hour-long talk, I though I'd let you know about the talk below. While the focus will be on improving Psychology research, I'll also be recounting the entire story. Title: The PACE trial for...

It seems to be the same merry dance I mentioned in relation to the Tesio quote above. They are tripping over themselves to avoid saying "organic" versus "psychological". So instead they call disease "a constellation of objectively recognised characteristics of illness". But this is not what...

Thanks for alerting me to this. Its taken me ages to post about it, because every time I tried to wade through this word stew, I lost heart, and decided to do something else. Just a quick scan through the paper and I see a lot of what I call "red flags": Citations to authority: Claims or...

Yes, I was a little alarmed about the "chronic fatigue", but at least he said out loud the thing about PEM (which I think quite a few of us pushed heavily). There was so much more he could have done with the topic I thought. Made the link clearer between long Covid and MECFS. I gave him lots of...

Great find, @Michiel Tack, Thank you! 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...

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...

:rofl:

Oh, sorry, just read this @Blueskytoo, that's a much better description than I could give.

Interesting thought, @Trish.

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...

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...

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...

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...

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

@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...

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.

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...

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...

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...