NZ: ANZMES research grants & scholarships (starting 2023)

And another one, haven't watched

https://www.youtube.com/watch?v=uKf2z7kFwY8

 

Nick Bowden's presentation (see post #20)

Interesting talk. Lots of (preliminary) data to mull over

However, this study demonstrates yet again how difficult it is to get any representative population level data for ME

NZ has a massive research database called Integrated Data Infrastructure [IDI] which probably contains information on the colour of my kitchen sink - but it doesn't include data from primary health care

So this study could only identify ME diagnoses in Ministry of Social Development (MSD) data, i.e. the records of working-age people receiving health or disability related benefits

The study looks at a lot of things but to me the most surprising was that MSD has only 1,842 pwME receiving benefits on their record

If this number was representative - unlikely - it would suggest a prevalence of 0.06%

Interestingly pwME receiving benefits are over-represented in the least deprived areas and also in the most highly educated groups, and 94% are of European ethnicity (very out of line with the general population)

All of this suggests to me that either it's very difficult to get an ME diagnosis at all or it's very difficult to get a benefit with an ME diagnosis, or both. And ironically the people most likely to succeed are those with a higher socioeconomic background, leaving those even more vulnerable out in the cold. It's also possible that more pwME do get benefits but are hidden in the data under different diagnostic labels like mental health, fibro or FND

The researchers will be looking for community input to help interpret their results. I'm guessing that'll primarily be via ANZMES but Nick gives his email address at the end should anybody wish to comment

Female to male ratio was 7:3

Also some discussion about how to get better data in the future. The proposed registry was mentioned as well as using regionally collected primary health care diagnoses. The curly issue of diagnostic accuracy wasn't mentioned

There's a lot more data in the video but I've run out of steam

 

It wouldn't show up people supported financially by their families, then, or who are too young to work or have reached pension age.

Given the peak ages of onset—teenage years, when affected people are likely to remain with their parents, and middle age, when the loss of one income might not leave a family hard up enough to qualify for social security—that's a big gap in the data.

 

Agree. Huge data gap. To be clear, Nick stresses that they're far from capturing everyone and he doesn't believe the 0.06% is anywhere near reflecting reality. The problem is - once again - that we don't have any better data

The idea behind the study appears to be two-fold. One, see what useful information if any can be gleaned from the available data. Two, document the gaps to make a case for better data collection and epidemiological studies. Given our funding environment I'm not getting my hopes up but I guess we just have to keep on pushing

 

Lynette Hodges' presentation (post #21)

No data yet, the study still being set up & systems and equipment are being tested

It will track activities of daily living and their impact in 50 pwME. Lynette outlines all the kinds of data they're going to collect from Actigraph LEAP watches & activity diaries over 25 days. I'm not sure they've finalised how they're going to analyse all the data they're going to collect

No mention of measuring upright time, maybe the devices they're using can't measure that?

 

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 with this problem but he has a little more money to do so (NZ$124,442) than he had for doing the same for ME (assuming he only had the ANZMES grant of $25,000, I don't actually know)

Would he have been able to get some significantly more useful ME prevalence data if he had had NZ$124,442 to play with? Or is there just no way with the available data?

I suspect the only way to get acceptably reliable data would be some updated version of that old telephone study by Jason (possibly this one from 1995? Estimating rates of chronic fatigue syndrome from a community-based sample: A pilot study). In which case NZ$124,442 wouldn't go far

Anyone know how much such a study would cost, ball park figure?

There's also the question how much the ME community should, or is willing to, spend on epidemiology vs research into pathology and treatment avenues

Reliable prevalence figures would be great to have and could support more effective advocacy, especially if they catch the currently seemingly "missing" groups (e.g. non-Caucasians). But they would be unlikely to contribute much to understanding pathology. While it's theoretically conceivable there could be a genetic signal linked to ethnicity or a signal linked to environmental exposure it would take a much larger cohort to pick those up, if they're even there, than we could ever hope to get funding for in NZ

Is there a clever way of combining an epidemiological study with a registry that would make each individual component cheaper but result in better quality data?

I'm guessing Nick is thinking about this, maybe together with Mona Jeffreys and Kahurangi Dey who're doing some feasibility(?) work into a registry as part of another ANZMES grant. If any of you are reading this, it would be great if you could join us here (there's also a private subforum option)

 

It's interesting to note the wording used: the grants haven't gone to laboratory research studies.