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Thank you for livening up this thread, Jonathan, you must have a few more followers than me ;) The bolded bit is precisely where I keep getting stuck. Any ideas what such a focused research aim might be? My interest in a registry is actually to a significant degree due to the potential flow-on...

A comprehensive plain language resource covering the very many things that need to be thought through when considering establishing a registry https://registrybootcamp.org/short-menu ETA Also contains links to more in-depth resources like this book & addendum (haven't read either) Registries...

A discussion in a private group raised the question of how to deal with comorbidities in a registry. Summarising: Reasons for capturing common comorbidities: to look for possible commonalities in underlying pathology, to see if symptom subsets correspond with pathology subsets The obvious way...

Otago Medical School is looking for lived-experience volunteers - patients and carers - to help train the next generation of doctors. If patients are too ill to go to the medical school the med students can do home visits in mini-groups. If interested in volunteering contact Friends of the...

I dimly recall us discussing the suitability of FUNCAP for measuring PEM. IIRC the general feeling was it was not finegrained enough to capture PEM well (FUNCAP wasn't designed for assessing PEM)

See this thread https://www.s4me.info/threads/assessing-current-pem-severity-whether-one-is-in-a-crash.42400/

Well, maybe your auto-correct has grasped something of the essence of the thing: PEM is an extortionate price to pay for indulging in some minimal activity

Good on Claudia for engaging and thinking about this I'm not aware of any validated standardised instrument, or any really, for this. So an open question might be the best way to go for now. Maybe two questions: In the last x number days, were you more active than usual? Are you currently...

extortionate gremlins at work?

/...continued/ An finally: What other important questions could a (low-budget) registry answer? And which question should be the main priority? Or, given there's not been much engagement with this thread, do people think a registry would not be a good idea? If so, why do you think it's a bad...

/...continued/ We have a general idea already, there's much more seeking (and needing) than getting going on. Selection bias would likely skew figures obtained from a registry but they could still be useful for advocacy See previous question See previous question /continues.../

/...continued/ Not by itself a question to build a registry on but could be interesting in conjunction with the stratifying question above and it would be an easy question to add to a registry. The symptom/s bothering people the most could be markers of important subgroups, e.g. the always...

/...continued/ This could be a useful question. Not so much for the mod/severe issue, we already stratify by severity, and the bit we don't know - how many in each category - would be another question for that elusive good epidemiological study But a large enough registry could help make sense...

Some thoughts about the example questions in the previous post's quote, and their relevance to ME (I'll break it into several posts) Would be important information to have, we seem to be 'missing' whole chunks of the population e.g. non-Caucasians, but given the diagnostic mess - including...

Has anyone found out more about the potential NZ patient registry? Like, what's actually being proposed and what stage it's at? Taking another look at the bolded bits in the quote below, what are the most important questions we would want a national patient registry, in NZ or elsewhere, to...

Nick has received a grant to look into the prevalence of autism in NZ. Interesting because autism very likely also has significant diagnostic inconsistency issues that make the usual public and medical records unreliable. Unfortunately the newspaper doesn't say how Nick is planning on dealing...

Have not been able to follow this much, so just some disconnected thoughts on the topic I donate but don't fundraise for much the same reasons already posted. I briefly tried in a small way and found it was too much effort for too few $$$ and caused way too much social awkwardness One...

Have only skimmed bits of the paper. A couple of questions: There were significant age differences between the 3 groups and this wasn't mentioned in the limitations section - does age not matter in this type of scan? The graphs show that the ME group had the widest spread with the most...

Interesting that most of the posts here centre on a lack of energy (however you want to define energy) when one of the most frequently heard comments is "it's much more than just fatigue" In other threads the discussion often veers towards equating ME-fatigue with feeling ill or feeling...

It is seriously annoying the term functional has been hijacked by the double-speak crowd. Every time you see it you have to double-check which meaning applies. Double the effort In this instance the term functional is being used in its neutral form simply indicating some form of signalling or...