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Just managed to view (and listen to) this. TBH I :cry::cry: but that was from it so straightforwardly introducing a GP to my illness. Thanks.

I’m still wondering about this one. I’ve bumped it as this seems to be the only thread discussing it and I still would like to know the answer, especially to the last question here: if someone fit every IOM criteria for ME/CFS except “unrefreshing sleep”, what is the differential diagnosis...

Just wanted to bump this one. It hits it on the head: Yes, I do as a pwME want to learn more about successful strategies to live as well as I can when I can with this condition. But it is not a doctor’s role to focus on that. I especially like your last paragraph. Ultimately (as I’m pleased...

My review of googled publications suggests that delta is not dramatically mutated from past covid-19 (so reasonable to assume it will behave much the same until proven otherwise), the main differences (identifed and verified so far ETA I mean just that there’s limited delta variant specific...

They do, but then find nothing to support that supposition. And say so. It does read as confused but mostly because they disproved their hypothesis and found instead that the correlation was better with something they only included as a ‘potential moderating factor’. if they were writing an...

This post https://theconversation.com/why-governments-will-have-to-consider-the-costs-of-long-covid-when-easing-pandemic-restrictions-164944 on The Conversation appears to be by an academic at AUT (so, NZ). This is the S4ME thread: The Conversation: Why governments will have to consider the...

I too think that the term fatigue is not just ones experience or sensation but a word that describes some form of actual wear (like metal fatigue, but in a medical sense). It’s not just about sickness behaviour. It’s something not working. I can absolutely be fatigued without realising it...

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This sort of thing is more what I do normally - so I can use my energy for living. That, and most importantly: if I cook something I make enough to have leftovers. My fridge and freezer always have a stock of leftovers so I can heat and eat (or sometimes just eat) something I know I can...

Anyone know: Did Brewer et al go on to do more with this finding since? They’ve had a decade.

the “control” was required to have no history of mold exposure. Probably no such requirement for CFS patients tested. Not a good control then.

1) Definitions need checking. Their definition of severe and very severe (as described in Elizabeth’s life throughout the piece) is what we’d tend to call mild-moderate here. She is severe in PEM but only moderate on average and even mild in many ways. Remember: to be mildly affected with ME/CFS...

Reading this thread I found some of them I only agreed with parts of (or I felt that there was extra stuff in there that made it harder to see the main point) so here they are, edited down to something I’d agree with/want to say: Personally: I find that I can be very bad at knowing when...

Anyone know anything about this? Sounds good in theory (though not my region) but how to know if it’s just another waste of time and energy? (Are they selling anything? Do they believe we all fundamentally need mental health services (not incidentally) and just need to be coaxed into it with the...

I agree, it’s his book, his experience and he doesn’t need us editing or censoring it for him. My thought was that the (essential) proofing stage is a good time to review for minor changes and phrases (not actual edits) which might make a big difference to how the audience reads the book. I...

I agree with your point. ... But the concept is not a bad one: to avoid making all the very same mistakes again under a new name. reviewing the article I found the following suggestions: NB I’ve selected the bits I quote but there are some assertions in the article which I would say are...

I (idly) wonder if anyone knows how to reach him to offer a proof-reading of his “auto-fiction” which specifically addresses ME/CFS? I know that every book needs a good number of proof reads and readers for a good result (I’ve done this myself for a few friends who are authors - I just read...

Sure but expensive and difficult (long term monitoring ...although that should be increasingly doable with many people’s willingness to be monitored 24/7 on health aspects without privacy. I wonder how soon studies will be scaled up dramatically in this sort of way...or if there’s something...

Me too! somewhere I can vote for that?

Not sure where to put this as it’s very much about the NZ system but it’s not specifically about ME/CFS. In fact, they might quite definitely exclude ME/CFS from the definition of “rare disorder” (on the basis of syndrome vs disorder definitions) but I don’t know...