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Just tagging people who have chatted about fragrance before: @Mij @boolybooly @MeSci @Tree @Kiristar @wabi-sabi

I thought it would be good to have a thread where we can share fragrance-free products, since they're hard to find. Something working for one of us does not guarantee it will suit someone else. But at least if someone is stuck for a product, they'll have somewhere to start. Since we're all in...

I don't think it's accurate to say that Goudsmit coined the term pacing. It was already in use, and she decided it could work in ME/CFS too, and introduced it to the field. This is from her paper with Nijs, Jason & Wallman: I think that paper really muddied the waters, as there's a lot in...

Here's a nice summary of pacing for ME/CFS by Goudsmit. I found this helpful in the early years. Or rather, when I came across it after figuring pacing out for myself, I thought, that's a really good summary of pacing. The pdf is dated January 2011 but the copyright is 2005, so the document...

I have a tiny bit of experience of this. For me, it has felt like suddenly being in Lilliput, where I'm huge and everything else is tiny. Or finding yourself in a doll's house. And it's just benignly odd/funny, not distressing. The first time was about 5 hours before the symptoms of my...

What she said. Based on the evidence on this forum, @Hoopoe, you are on a roll at the moment, taking your driving test, exploring dating, studying (hope I'm remembering right that they were all you). You are doing a fantastic job - those are enormous leaps for someone whose life has been...

Maybe!

@Jonathan Edwards, I was thinking about our conversation above, and another thread where you talked about dose-response studies and sigmoid curves. Here's what we were talking about: What I'm interested in is this: Let's say, hypothetically, we could do a study investigating different...

Oh wow, I now realise that the weird little needles-in-plasters that a physio (who attempted acupuncture on me twice) put on my earlobes inspired this ear seeds business. Here's how the needles-in-plasters went for me: They hurt my ears, oddly enough. I rolled over on my side during a nap and...

Is there anything here that might be relevant for ME/CFS? Didn't some studies show that we actually had more ATP than expected in some scenarios? Would that imply that our cells are under some kind of pressure, even if we don't know what that pressure is?

That all sounds lovely to me. I don't understand the gym obsession either.

Agreed re expectation bias. What's interesting to me is that they found a difference between more intense and less intense exercise. The PACE investigators, on the other hand, seemed to expect CBT/complex incremental pacing to be more effective than GET but it wasn't. The 2007 Jason et al...

Agree 100%. I think we need to be equally critical of the assumption that exercise doesn't make anyone, with any condition, better. If there's good quality evidence out there for other conditions, I'm open to looking at it and seeing whether there's something there or not. To be credible...

Exactly.

I agree that an improvement in an objective measure alone does not prove benefit. But if that is coupled with improvement on a subjective measure of functioning, or something like return to work, I'm open to considering whether real benefit has occurred. In ME/CFS we have not seen that. But I...

Well I'd be open to evidence with objective measures, like if forced expiratory volume were measured using spirometry. It was able to separate the wheat from the chaff in Wechsler's asthma study. So if someone were able to show that people with chronic dyspnoea following Sars-CoV-2 have...

I agree. Except for them, it's become ordinarily unprofessional. This bit is particularly horrible: What the article said was: So there's nothing to suggest that suboptimal implementation of a mind-body approach led her to feel responsible for her symptoms, and everything to suggest that...

Oh no. My comment about tube feeding was based on this promising line in the paper: and the mention of "dietitians...as required". Maybe the judgement of when assistance is required is off - either through the physician not referring to the dietitian enough, or the physician and/or dietitian...

It's good that they have learned from the experience, and will improve, but clearly staff were not expecting the very severe patients to be as ill as they are: That does mean that these in-patient stays are peppered with requests and interruptions that very severe patients are not able for...

This could be code for "We have found that these people cannot do aerobic exercise programmes."