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Podcast: The Dissenter, episode 923, Nicholas Brown: How to Spot Bad Science Most of us here are all too familiar with poor science so not much new or surprising in this podcast, maybe apart from the argument that we need less science and fewer scientists, but still an interesting listen and...

The ALS fundraising had been on a steady upwards curve already for years before the ice bucket challenge. That challenge going viral very likely was random luck - but I guess you can only have random luck if you try a lot of things in the first place and hope that one of them will work out - so...

I'm sorry you've had criticism and stress for promoting this. I wonder if some of that criticism was a misdirected feeling of defeat by people who have tried and tried to fundraise but with little success? Not to excuse anyone turning their own sense of frustration on others, just trying to...

Picking on exactly 12 hours is indeed arbitrary. However, a delay in onset and/or peaking of a weird constellation of symptoms is common. There's some confusion because some people talk about delayed onset and others about delayed peaking. Personally I think looking for symptom peaking rather...

To me it just means we don't know yet what these early symptoms are a manifestation of. Some or all could be part of PEM or they could be the same sort of exertion intolerances people with all manner of other conditions get and pwME are just unlucky to get both. Because we don't know and because...

Fourthing? Quadding? Tetraing? Whatever, bloody well done @Simone!

Related blog https://harryboby.substack.com/p/this-is-how-we-solve-long-covid

Being on the lookout for "early signs of overexertion" is sensible. I'm not advocating for ignoring or downplaying any sort of symptom, just for naming and describing them with care and precision to reduce misunderstandings. We simply don't know yet if some of the early signs are manifestations...

Re Workwell, I've never been able to get a clear picture of their view of PEM. They've done presentations that made me think they view PEM the same as I do. But some of the language used in their written resources makes me doubt it. At the very least it's confusing, on two points in particular...

Trying to get my head around to what degree the discussion about PEM and CPET is about semantics or differences in substance. I think what's happening is people are discussing PEM at two different levels but don't always identify clearly which one they're referring to, and sometimes the two...

[Just found this sitting long forgotten in my 'thought experiments needing more thought' draft file. Brain not volunteering many sharp thoughts atm but I think the draft is coherent enough to serve as discussion starter. Seems topical in context of Nath's interpretation of intramural study...

Long Covid webinar. Hosted by the Helen Clark foundation (former NZ prime minister). Good speakers Doesn't say if it will be available for later viewing but previous webinars have appeared on Youtube afterwards https://helenclark.foundation/event/webinar-long-covid/

They're getting a lot of feedback, there were 200+ comments on their FB post already when I added my 2c worth yesterday. Didn't manage to read many of the comments so don't know what the general reaction is That's what the FUNCAP was developed for

Good to see they're looking broadly at non-restorative sleep and sleep disturbance, not just that mysterious 'unrefreshing sleep', too often there's a gap between patient speak and clinician speak. Patient speak: unrefreshing sleep = any sort of sleep problem from waking up feeling drugged...

ANZMES comments on NICE and releases Best Practice Guidance, see https://www.s4me.info/threads/new-zealand-anzmes.15144/page-3#post-521286 https://www.s4me.info/threads/new-zealand-anzmes.15144/page-3#post-521287

From last year but don't think this has been posted? https://anzmes.org.nz/national-advisory-on-me-releases-best-practice-guidance-with-clinician-and-researcher-support/

ANZMES commenting on the NICE guidelines https://anzmes.org.nz/the-nice-revisions/

Opportunism usually has a bad name but this is a type I like. Way to go! :):thumbsup:

no paywall here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10502894/ Younger briefly discusses the study here:

some random top of my head thoughts on charter idea (post & run, still unable to participate properly in debate) ethics review boards already have guidelines to consider when making decisions, if these were consistently applied rather than used as a tick box exercise we wouldn't be discussing...