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They don't even rush to psychologise some people with mental ill-health, especially when there were clear triggers for it. They help people gain perspective on what they're experiencing, understand that some of their feelings and responses are quite normal, and find strategies to help live with...

Yep. Patients won't always know what should be studied or how it should be done, but may be clearer about what shouldn't be looked at or what methods shouldn't be used. There have been so many missed opportunities and uninterpretable studies in ME/CFS because the cohorts weren't matched well...

Interesting, isn't it, that when people see a psychologist or counsellor to help them navigate a really difficult period, what they often find most helpful is the reassurance that their thoughts and feelings and reactions aren't wrong. That they'd be familiar to others who've gone through...

I wouldn't characterise the first four items as 'all or nothing' behaviours. They're part of chronic illness, and some of them are an inevitable part of living with it. None of them are unique to ME/CFS. The final item is a carefully set up leading question, and answers to it can't be regarded...

Specially as the fatigue+ill feeling can come and go within the same day in milder ME. I get up feeling like death, my limbs are barely working, but on a better day a good part of it will evaporate within a couple of hours like a spring haar. I haven't done anything except get out of bed and sit...

Doesn't really sound related at all, at least from the abstract.

Hear hear—thank you.

From my own experience I feel sure this exists. It would be interesting to do it over different time periods. There should certainly be a distinctive rapid-fatiguability-combined-with-PEM signature. If I wore devices on my right wrist and one of my ankles, I think it would show up as a 'barn...

It wasn't accidental, though. It was part of the BPS spiel back in the 80s and 90s, one of their patient-blaming tactics. Things like that can be picked up on years later by folk who may not even have been alive then, sometimes without realising where they came from. Being very fit is part of...

Yeah, I think that came from a twisted framing of normal experience. People often don't like doing things badly or leaving them half done, but it doesn't mean they're perfectionists. It's self respect, not wanting to let others down, taking pride in achievements, fulfilling their potential...

Just been trying to distil what managing ME actually involves—what the verb is—and I think it's waiting. It's what I spend most of my time doing. I'm not sure how to fill out and communicate all that implies, but (for me at least) it's the essence of it. And I have to do it, there's no...

It does, but I worry about suggesting they're really manageable. And that if I'm not succeeding at the managing thing, it's a skill issue. All too often it feels like managing floodwater. Attempts to get it out of one place only result in moving it somewhere else, you're not actually getting...

It hasn't done a fat lot of looking, TBH! There's not much research into the phenomenon itself. Much of the respectable work seems to have been done on demonstrating that it happens; that people's ability to exercise deteriorates. Even then it seems to be quite a mixed picture between...

I worry that it's partly due to the BPS lobby understanding that severe/very severe ME/CFS isn't their territory. That they might think it can be hatched off as a different condition, and argue that all the crap is still fine for people with milder illness. But it might just have been that they...

Yep. I'm moving away from using energy as well as pacing, substituting it with words like capacity and tolerance if they work in the context. I think talking about energy in relation to some symptoms might make it harder for others to understand. The experience of struggling to cope with noise...

Blimey, poor guy!

So why don't they put their efforts into kicking up a stink about this being unacceptable?

Did the 'boom and bust' phrase partly evolve alongside GET clinics, I wonder? I didn't really 'live through' that time—I had ME but I wasn't aware (I'd never heard of it at that stage), so I'm hazy on the timelines. Thing is, for mildly affected people and even some moderate ones, there is a...

Sorry, @ME/CFS Skeptic, I seem to have to deleted the first paragraph of the above post before I made it! I've lost it now, but it was a big thank-you for another excellent—and important—blog.

I wonder if a small trial of an accelerometer study—in preparation a larger one—might be something that @Caroline Struthers could consider for her project? It's exactly the sort of thing that would need in-depth patient input. Participation would be low risk (presumably people would be living...