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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...

Excellent videos. Again. Of course. :) Thanks to all involved, and especially for stressing how much patients' families are affected, too.

Just to clarify because a lot of the media coverage on the mink to human transmission numbers is a little misleading. Yes, 200-odd people have been infected by a number of mink mutations in Denmark, and more in other mink farming countries. This has been going on for some time. However, the...

Not exactly news to any of us here but if all nurses had this level of understanding of ME we'd all be a lot better of. Nurses have been at the center of some of my best and my worst healthcare encounters, the latter being the more common occurrence. I hope this thesis won't just gather dust...

Yes. In the meantime we make do with what we can get. Oh pulease... That got a bit garbled. 75% in wheelchairs? But hopefully it'll result in a good paper or two.

Would be grateful for a plain English translation. Anyone? Looks like your wish is mirrored by the authors @Simon M. The bit I bolded reads to me as a plea for others elsewhere with better funding streams to follow up and expand on the results. Because funding in NZ goes like this: So, a...

I hope this summary of what the Danish media are reporting on this is at least mildly reassuring. Lock-down of the northern part of the Jutland peninsula where the mutation has been found. The whole population there to be tested (280,000 people). Billion dollar price tag for killing the mink...

A little concerning regarding vaccines: More and more mink farms in Denmark are getting infected by corona. It's unclear how the virus is spreading between farms but one suspect is gulls carrying it on their feet (they don't seem to get infected themselves). Up until now infected and...

Looks like a fresh look is being taken at an old hypothesis, the hydrogen sulfide hypothesis. It was developed in 2007 by the mother of a pwME and - this bit I googled - it took off for a bit when Dr De MeirLeir took it up but then interest in it seems to have fizzled out. Now Dr Bindu Paul is...