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Yes, just a teeny tiny bit of biomarker hype happening here :rolleyes: More interesting but with much less detail it was mentioned that they’re planning to study cell-free dna This doesn’t seem to have been looked at much in ME if the tag ‘cell-free dna’ is anything to go by I checked the...

This question goes right to the heart of what a patient support organisation should be Fact: patients will seek out places where they can talk about their own and other patients’ treatment experiments and they will want to try things based on that So is it better for a patient support...

Note that a functional registry happening is by no means a done deal. I imagine it would help if as many NZ pwME as possible register their interest. I haven’t tried it but I think you could just click through all the food insecurity questions without answering to get to the end of the survey...

I don’t disagree. The BPS model of causation is neither coherent nor helpful and the sooner we get rid of it the better. I just don’t think a short video like this is the place to take that fight. This video has a few minutes to convince doctors practicing right now to not do stupid things like...

This is one of the few presentations I’d be happy for my doctor to watch (or an ME/LC-child’s doctor, which is more the target group here). It might be worth editing out the couple of conference specific references and promoting the video for medical education. Or even do an English version (the...

What they were planning to do before their funding was pulled from under them The last one sounds interesting. Devil’s in the detail - which isn’t provided - but it would seem a shame to not have a good look at the biosamples One very generous donor is backing this, giving $450,000. They’ll...

Oops. I started a post about that but it got lost half-finished in my draft folder. I was going to suggest running the medical terms past a French doctor or two if possible. There are specialist medical dictionaries but sometimes it can be hard to tell which terms are commonly used and which are...

The paper and the discussion are over my head but just wondering, would it be worth the effort for someone to submit a comment raising the points discussed here, to be published beside the preprint? It might then catch the eyes of the reviewers

Saw this on FB. Don’t know anything more about it but looks like Kimberly and Sam are having fun fundraising

The websites linked in the twitter post are highly recommended reading for advocates because it’s even worse than myth-busting simply not working: https://opportunityagenda.org/messaging_reports/telling-an-affirmative-story/

Quick heads up: RNZ National 9.05am tomorrow (24May) interview with author and pwME Susanna Clarke

Minuscule to the point that 3 of the authors’ families part-funded the study?

Just guessing but could well be the study discussed in this video: https://www.s4me.info/threads/nz-anzmes-research-grants-scholarships-starting-2023.33465/#post-566568 There’s some further discussion about the preliminary data presented in the video in that thread

That was a deeply affecting watch. I’m still reeling. My husband only read the article about the piece and decided not too watch, too upsetting As for how it plays to a general audience, I don't know. It's hard to imagine anyone remaining unmoved by it but who knows. I did wonder if it would...

Udmærket @Midnattsol I’ll leave comment on any last details to the people who actually speak Norwegian. My brain just processes that language as a strong Danish dialect - undskyld! - and some finer nuances can get lost in translation. That said, I didn’t spot any issues. Thanks for all your...

From a public FB post from M.E. Awareness NZ today (I don’t know how to link FB posts, so just copying the text here) Media events on May 12. The first item is described elsewhere as a mini documentary I don’t know anything more about any of it

Yes, very much aimed at a very lay audience. Members here are unlikely to learn anything new. Anna lists a few of the LC hypotheses floating around but the key take-away is that there are many more questions than answers and that she wants to help find some of the answers but $$$. Would be nice...

There seems to be a paragraph missing in the symptoms section?

Excellent work @Martine As I wrote elsewhere, I’d remove ‘planifiée’ from ‘l’augmentation progressive planifiée des activités pour étendre les limites énergétiques (pacing up)’ But really, a top notch translation

I don't know what French speakers use for these but I suspect the situation is much the same as in English, any such terms are used almost at random to mean whatever the speaker wants it to mean. So writing a definition of proper ME-pacing is probably the best way around this, together with a...