New Zealand: Dysimmune Research - research organisation

I signed up for this study. There were a few slightly ambiguously worded questions but not in any way in a psychosomatic red flag sort of way, just ordinary screening questions not tested sufficiently on outsiders to check for potential ambiguities. Just a minor nuisance issue and easily resolved by asking the very responsive team for clarification.

As someone not living near a testing center I'm hoping they can get their planned home collection kits up and running. I think this is contingent on funding.

That's my biggest worry re this research, that insufficient funding will force them to reduce the scope of the study - cohort size, number and type of tests run, etc - to such a degree that any findings will be weak. I hope that won't be the case but crowdfunding this sort of thing isn't easy

I also made a small donation but if anyone reading this with much deeper pockets could reach into them, like reeeeal deep...

 

I've just emailed them and put my name forward.

 

Looks like a positive initiative.

 

I didn't reply their email due to other health problems that surfaced.

 

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 if someone in the audience with deep pockets took note

Rohan filled the lived experience slot and it’s always nice to get to know one of our advocates a bit better. But am I the only one who, when seeing a pwME & OI, wants to yell at the screen “don’t stand there, sit down!!!” Anyway, I hope he didn’t get (too much) PEM