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Yes, I picked up on that one, too. Some years ago I participated in a study on face blindness and turns out I am. Just mildly, the least blind of the blind, but definitely face blind. I'd never connected it to ME though. Of course it may have nothing to do with ME. Amongst the millions of pwME...

Ah now @Marky. That would be the nocebo* effect. Deep, deep down in your heart you were worried Ritux wasn't going to work - so of course it didn't. *Nocebo: defined as punishment for cynical souls who refuse to believe in magic, consciously or subconsciously. Expect a publication in a...

Don't know how to answer that. Exactly what is brain fog? I get different types of cognitive difficulties. Do they all fall under brain fog? Most days I can think perfectly fine for a few minutes at a time. After that thinking becomes progressively more difficult. This involves all sorts of...

We've discussed this before somewhere. I have two main issues with the chart: 1) What they call immediate PEM is what I'd call fatiguability. (@Trish) 2) The linear presentation makes it look like the 3 stages follow each other. My experience is that a) I can skip the immediate stage...

Kiwi Covid-19 long-haulers reveal 'heart-breaking' ongoing battles as group feels abandoned by health system https://www.tvnz.co.nz/one-news/new-zealand/kiwi-covid-19-long-haulers-reveal-heart-breaking-ongoing-battles-group-feels-abandoned-health-system May be a case of be careful what you...

I think you're being overly harsh here. The article is not supposed to be an in-depth feature on ME, it's just reporting on an event. Sure there are many more points that could have been mentioned but I think the journalist did ok and managed to stuff quite a lot of information from an 80-minute...

Haven't watched yet but here's the recording:

Again, have to go back to the days when I still did silly things like exerting in hot temperatures. Back then I would sweat, a lot even, but at the wrong time. When walking with a group I'd always be the very last one to start sweating. I'd be very, very hot but not a drop of sweat until...

I don't seem to do proper shivering. My normal temperature is around 36.3°C/97.3°F, so a little on the low side. Pre-diagnosis when I didn't know any better and was still badly overdoing things physically I'd get really, really cold, even on a warm day, as a direct reaction to exertion. My...

The talk made it onto page 5 in the printed edition of the local paper, that probably hasn't happened since the Tapanui Flu days in the 1980s. Small steps... the headline starts with 'Chronic fatigue syndrome'. Sigh...

This was on today. I'll have to wait for the recording myself but in the meantime my personal undercover spies report attendance of at least a hundred in the room. Most of them apparently looked like students or scientists (not sure how you tell, easy familiarity with the venue maybe?). Plus an...

To date there hasn't been a lot in the media about long-Covid here but NZ hasn't escaped the scourge either. The profiled person has been diagnosed with post-viral fatigue, no mention of ME. Doesn't use the term but clearly experiences PEM. Seems to have got the 'energy envelope' message. Is...

It's not my impression that anybody here at S4ME is suggesting that? My own argument for accepting recommendations/suggestions based on committee/patient experience (where no other evidence exists) for 'do no harm' situations was precisely to ensure those suggestions stay in the guidelines. I...

Based on the premise of 'first, do no harm' I think we can have different levels of evidence for: a) recommendations intended to prevent harm - here it's reasonable to rely on patient experience where no other evidence exists b) recommendations for treatments intended to cure (or significantly...

Depends how clever they get with their rebranding. I expect something like PAFIAT (personalised and flexible illness adaptation therapy) or something similar that can mean anything and everything. They'll dial back on terms like cure, exercise, and pushing through symptoms. Instead we'll be...

That's my impression. They've moved on from deconditioning and, in some cases, from conscious false illness beliefs. It's now more about subconscious "learned" behaviour, i.e. your brain interprets harmless input as a threat and reacts (subconsciously) with the sickness response. Alternatively...

251 references. If nothing else they've put some work into this. Unfortunately over my head so no idea if it makes any sense. But they do seem to have listened to patients about the nature of PEM at least and are not confusing it with post-exertional fatigue. That's always a good start...

Just for information, some nuance seems to have been lost in translation in some of the English language coverage. Nothing critical but if you're wondering about insipid expressions like 'discomfort after effort', that was 'malaise après effort' in the original French, which basically means PEM...

Just had a look at the list of stakeholders. Quite entertaining. I suspect the British Association of Sports Rehabilitators & Trainers and the Faculty of Homeopathy won't be too happy about the draft. Mysteriously the Ministry of Defence is also on the list. We really must be scaring the...

Yes, I've been wondering about that, too :nailbiting: This. Could be very important I think. A quick skim through this nauseating murk makes me suspect one of their main lines of argument will be that the draft recommendations are not evidence-based and therefore deprive patients of...