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Yeah, I think there could be a lot of merit in the different groups working much more tightly together. Would be great if they could coordinate in such a way that everyone uses identical selection criteria and identical CPET protocols & other measures (the technical bits of how exactly to take...

That advice box at the end "How to reduce everyday tiredness" was a bit unfortunate. It's not meant to refer to ME but that could definitely have been made clearer. The article itself is actually quite interesting. Much of it discusses a number of different types of tiredness and fatigue - and...

Contains some interesting tidbits including unpublished (I think) data from upcoming publications. Also a finding I hadn't heard of before that a subgroup developed very high BP during exercise. Also bits I didn't understand about arterial(?) resistance. And a planned cooperation with Prof...

The talk is now available on Youtube (haven't watched it yet). The discussion about this video continues here: New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges

Thread split from News from New Zealand and the Pacific Islands *********** The talk is now available on Youtube (haven't watched it yet).

Working my way through "The Constant: A History of Getting Things Wrong" now. Highly entertaining. I think it would appeal to a lot of people here. Chock-full of scientists through the ages getting things hilariously and/or disastrously wrong. This episode about Franz Mesmer has me wondering if...

That's really putting the science into S4ME! I like it. Proper patient-driven research not just some proforma... what's the equivalent to greenwashing here, patientwashing? Hm, maybe not the best word but you get my point.

I like curious minds :). Thanks Andy.

You're soooo not alone in this! And I wished I had a good answer. Mostly I just muddle through from one day to the next spending what little energy I have on whatever has floated to the top of the most urgent list. In a way decisions are easier now than when I was less severe. Fewer choices...

In an ideal world yes. Realistically... glances at to do list, compares to energy envelope, computes... very unlikely to happen :(, sorry @Trish. Maybe you could just refer them to this thread in your letter if you haven't sent it yet? The main reason I made the thread a public one was that it...

I reckon this thread is more informative about PEM than some of the published papers out there! :trophy@:balloons::party::thumbsup: It's also been very helpful to me in trying to answer some of my own questions. As I said earlier, I used to think I got PEM from both cognitive and physical...

Maybe they think dogs don't have false illness beliefs? Some slightly tongue in cheek ideas here: 1) Get a medical detection dog charity excited about ME. Somehow... This lot for example works with researchers at the University of Otago (Prof Tate's uni) on cancer detection...

Nice idea. What with all our metabolic changes it might very well work, too, eventually, just as soon as we have figured out a way to diagnose ME with much more certainty than the current diagnostic criteria can provide. Thing is you have to train the dogs - or rats* for that matter: imagine...

You appear to have ME on top of... ME. https://www.aapmr.org/about-physiatry/conditions-treatments/rehabilitation-of-central-nervous-system-disorders/metabolic-encephalopathies

Just checking I'm understanding you correctly @Creekside. Are you saying that: a) an IFN-g rise about 24 hrs after physical exertion is normal and occurs in all people including in in healthy people, and b) in ME that normal IFN-g rise then causes something abnormal, like excessive activation...

No idea. Google just turned it up as is. Going by the address it was posted by Solve ME/CFS in 2019 - so not that long ago - but searching their current website I can't find it. There are a few links in the handout to www.meadvocacy.org (the ones pushing ICC) but I can't find it on their site...

Has anybody been able to ignore the rather irritating certainty about what ME is according to Hyde and looked at the actual qEEG study? The way it's written it sounds a little like fitting the evidence to prior expectation but I don't understand the technical details so could easily be missing...

Clarification: Just realised that the term "cognitive PEM" is ambiguous. It could be interpreted as cognitive symptoms of PEM after either physical or cognitive exertion. That's not the way I meant it. I think it's beyond doubt by now that cognitive symptoms can be part of PEM. I use...

Haha. No, it was more a case of great minds think alike. ;):) I'd drafted my 'provocative' questions but was hesitating to post them because I was a little worried about being misunderstood. I mean, first I create a poll to encourage people to share about their cognitive PEM - and then I go and...

I think you are a little too hard on the authors of this particular study when you look at what they had to work with (the fact that after all these decades there still is so little to work with is an indictment on the field in general, not on this particular team, and a different story for...