Follow

PSA re Decode ME study, DNA part 

PSA for - if you are taking part in the study, be prepared that you might not get asked to submit a DNA sample.

You are still in the study, just not the DNA part.

I say this as someone who was screened out yesterday and not asked to take part in the DNA part of the study. I was quite crushed and I did go through a mini "maybe I'm not really ill" episode. But today I've managed to remind myself that I am indeed ill, and the head pixies can bugger off.

@mecfs

· · Web · 3 · 3 · 10

PSA re Decode ME study, DNA part 

@GwenfarsGarden ah, sorry to hear you're not doing the DNA bit, it sounds like it would be a small bit of fun to send off a sample tube and all that.

PSA re Decode ME study, DNA part 

@alex yeah, I was really excited about that. But they have narrow criteria for the DNA part and apparently I, and other didn't meet it (as I've seen discused on twitter), so I wanted to warn people.

Good luck that you get to take part 🤞🏻

PSA re Decode ME study, DNA part 

@GwenfarsGarden ah, i wasn't chosen. that's a shame because it would have been fun, but it still feels good to contribute in some way.

PSA re Decode ME study, DNA part 

@alex Darn, but yes, you are still contributing.

I guess we all are so desperate for research we are all keenie beanies to do whatever we can

PSA re Decode ME study, DNA part 

@GwenfarsGarden If it helps to hear from someone else, you are really ill and there are many reasons other than being a faker that you might not be suitable for one part of the study. 💚

PSA re Decode ME study, DNA part 

@bright_helpings this does help. It's funny how our brains go to worst case scenario. I am ill, and I'm still in the other part of the study!

PSA re Decode ME study, DNA part 

@GwenfarsGarden Oh, crap, that's what I've been forgetting to do for the last week #brainfog

PSA re Decode ME study, DNA part 

@sparrowsion it's definitely worth doing as your answers will still be part of the research. You can do it in bits, you don't have to do it all at once.

PSA re Decode ME study, DNA part 

@GwenfarsGarden I've run out of spoons just getting to it. Good job analysing complex websites from inspecting raw HTML is part of my job, or I would have been effectively blocked from it.

PSA re Decode ME study, DNA part 

@sparrowsion oh bloody hell. Sorry it was such a faff. Hopefully now you have got in, it will be more straightforward when you next have some spoons

PSA re Decode ME study, DNA part 

@GwenfarsGarden Got there, not happy that you can't be born in a town with punctuation in its name. And that they're only interested in your AGAB and don't care about what hormone set you're currently running, or a host of other potentially relevant factors (like, what illness triggered it if not covid).

Don't expect they'll be interested in my DNA -- their description of "mild CFS" fits me perfectly.

PSA re Decode ME study, DNA part 

@sparrowsion I think there are a few things they could defo do better. Really, at this point in time, studies should really be much better at being more inclusive of different genders and whether you are no longer AGAB etc.

I actually had to write to them before I completed it, because they wanted my birth name, and I changed my whole name when I was 18 very deliberately. It kinda freaked me out because I don't want to think of my previous name and the associations it has. They did write back and say I could use my 18+ name, so phew.

And as someone who didn't get viral me, but slow-onset, I suspect that would have cancelled me out too. I get the focus on viral ME, but they have to get beyond this, given 25% or something like that, are people that have been slow onset.

So I'm with you on your frustrations. I still think it's good it's being done and we are still a part of it. But I think they could have been clearer on the criteria they were looking for, for the DNA part.

PSA re Decode ME study, DNA part 

@GwenfarsGarden Oh, FFS. Browser-suggested strong passwords rejected because they don't contain "special characters", information about which is contained in a pop-up in tiny, low contrast text which disappears before you have chance to read it.

Then when you finally get in, the survey itself is blocked by a browser security extension, and it's o indistinguishable from malware that none of the easy "allows" in the extension, including disabling it, work.

Sign in to participate in the conversation
Rage.love

Generalist Hometown instance with a strong focus on community standards. No TERF, no SWERF, no Nazi, no Centrist.