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I've only been able to find 3 results, one was high (23) but that was during an acute infection. The other two were reported as <1 and 1mg/L respectively, so nothing very spectacular to see (I ticked <1)

Around 20min into the video Simon Carding talks about something he calls Hinxton consensus for clinical trial outcomes. I don't think this has been discussed here? But it sounds potentially important? I haven't listened to the whole thing yet so don't know if there's more on the topic later...

Question for those of you who use the term poisoned: Do you think you use it for the same constellation of awfulness that others might use the term malaise for? Or do you use both terms to separate between two different phenomena? I don't use the term poisoned myself because I associate it...

It's a long time since my last drink. I ticked altered taste and gastro symptoms, both used to happen very quickly, after just a few sips for the former, a little later for the latter. I can't remember if there were any later symptoms, possibly because I only ever consumed alcohol in conjunction...

Contrast the above with this Newsroom piece today (currently paywalled). The first sentence reads Don't know where the "hundreds" comes from, presumably an error, but that sentence says all you need to know about how seriously the NZ government takes Long Covid

Two pieces in Sundhedspolitisk Tidsskrift, one written by editorial staff (based on press release by the Danish ME Association), the other an opinion piece urging the health minister to take note of Maeve's death and learn from it...

Donation made with deep gratitude for your past and continuing efforts Dave. They're hugely valuable to our community Fingers crossed others able to donate have just been holding off to see how it goes but are prepared to jump in at the last minute to help reach the target, less than a week to...

That website needs a little work Usually I keep my donations within NZ, partly out of local loyalty and partly because the tax credit allows me to donate more in total. But sometimes I make an exception like here where I wanted to show my appreciation for this team's, especially @DMissa's...

Haven't been able to catch up with my reading yet but the topic of this thread felt vaguely familiar. That feeling must have been the last faint memory traces of a 2020 poll on it https://www.s4me.info/threads/poll-physical-vs-cognitive-pem-same-or-different.16948/ There are probably some...

Some ideas (not really thought through, intended more as discussion starters) change the allocation of the available $$$ so there's the possibility of one significantly larger grant within the same total, this may attract more biomed researchers with higher lab costs select one specific topic...

Another word search, this time for 'scholarship' unearthed this in the 2023 report So in 2023 they had 7 applications for a total of 6 grants/scholarships yet they only funded 2 grants, 0 scholarships. I find this simultaneously reassuring and dispiriting. Reassuring because it shows they're...

Duh! Why didn't I think of that? :facepalm: Thanks for going through these. So that confirms they have been making donations I found this tucked away in the 2021 performance report (word search 'Kathy'), it's probably in the other reports, too, but I only looked at the one I may be mistaken...

I may be misremembering but doesn't Prof Tate always have ANZMES on the list of funding sources on his slides? Now you mention it, I don't think I've ever seen any financial statements from ANZMES (or MEISS for that matter). Other organisations my husband or I are members of send them out prior...

Thanks @Hutan. Excellent letter, too. Do you know what if anything came of the application? If you're not bound by any confidentiality considerations I expect Mona and Paula will be talking to each other about this? The ANZMES link is unclear to me, too. The registry was mentioned as part of...

Yeah, I noticed this, too. Speculating if the reason is lack of suitable applications. The ME research ecosystem in NZ is so limited there may not be any obvious pathways - like qualified supervisors - for Masters or PhD students to follow outside the couple of very small existing teams - and...

So what would be the purpose of an ME patient registry in NZ, if it was similar to the Long Covid one? Identification of gaps in support in the NZ system would be one though you'd still not get any reliable quantitative data. Also not sure if a registry would be the most efficient way of...

I know this was a while ago but can you still recall or dig up, without going to too much trouble, what you wrote about establishing a patient registry? Like you said, the most likely scenario is that it would be tacked onto the Long Covid registry though I'm not sure how they stand regarding...

part 2 https://newsroom.co.nz/2024/10/09/the-burden-kiwis-with-long-covid-speak-out/ part 3 https://newsroom.co.nz/2024/10/10/the-burden-govts-head-in-the-sand-on-cascading-long-covid/

A misunderstanding here? I don't think anyone claimed "non-officer members would have to do a lot"? I understood member engagement to simply mean to actually bother to vote on major issues, whatever major means in this context. But that's just my guess and I don't have the capacity to dig into...

Looks like there's some movement on a possible NZ registry. ANZMES just put out a press release which briefly mentions the possibility of setting one up Also, have you seen this guide? "So You Want to Build Your Disease’s First Online Patient Registry: An Educational Guide for Patient...