Closed UK: DecodeME updates, was recruitment thread.

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I'm wondering if we could gather some ideas on how to create threads around the DecodeME results and paper release so that we can manage the explosion in number of posts, and any interesting posts are easier to find again in the future. For reference this thread is already at 44 pages.

For example,
* Media thread(s)
* Notices for Separate Threads for specific gene pathways so that technical discussion can be focused.
* Thread for discussion such as ongoing research into the data.
* Thread for possible issues and ideas about data retention and future access to data.
* Treatment ideas - should they be separate or linked to gene pathway threads.

What do people think.
 
wigglethemouse said:
I'm wondering if we could gather some ideas on how to create threads around the DecodeME results and paper release so that we can manage the explosion in number of posts, and any interesting posts are easier to find again in the future. For reference this thread is already at 44 pages.

For example,
* Media thread(s)
* Notices for Separate Threads for specific gene pathways so that technical discussion can be focused.
* Thread for discussion such as ongoing research into the data.
* Thread for possible issues and ideas about data retention and future access to data.
* Treatment ideas - should they be separate or linked to gene pathway threads.

What do people think.
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I like that. And a general thread where people can summarise and extract the results that’s less cluttered than usual (thanks to your thread splitting idea) would be great to help people with limited capacity get an idea.
 
wigglethemouse said:
For example,
* Media thread(s)
* Notices for Separate Threads for specific gene pathways so that technical discussion can be focused.
* Thread for discussion such as ongoing research into the data.
* Thread for possible issues and ideas about data retention and future access to data.
* Treatment ideas - should they be separate or linked to gene pathway threads.

What do people think.
Click to expand...
I think a thread for media is a good idea.
Same with data retention, access, etc.

Those can probably be created now, and unlocked when it publishes. Maybe the main preprint thread should also be created in advance so we don’t get duplicates.

I’m not sure what the best approach would be for things more directly related to the paper. One concern is that things might become too disjointed or that we’ll end up essentially discussing the same things multiple places.

I understand and support an effort to make it accessible for people with a limited capacity, but at the same time that might require a lot of effort and policing. The best option might be to just wait for someone to be able to make an accessible summary after the fact once members have been able to make some sense of it.

Maybe the main thread can start with a reminder to stay on topic? The news in brief banner function might also have some use to make people aware about taking extra precautions with adhering the the rules in the coming days/weeks. We don’t want the mods to crash either!
 
Nobody seems in any way to be preparing for a result which says something along the lines of

'We found no genetic links or associations', or 'we found only a tiny association which could easily be noise/down to another confounding factor'

Essentially a negative result.

Do we somehow have certainty that this isnt going to happen?

I'm more trepidatious for a negative result than excited for something positive.

Sorry to be negative I am really struggling & low. I seem to remember Jonathan having a positive outlook on it but he didnt/couldnt say what. I'm very fuzzy memory not good
 
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wigglethemouse said:
I'm wondering if we could gather some ideas on how to create threads around the DecodeME results and paper release so that we can manage the explosion in number of posts, and any interesting posts are easier to find again in the future. For reference this thread is already at 44 pages.

For example,
* Media thread(s)
* Notices for Separate Threads for specific gene pathways so that technical discussion can be focused.
* Thread for discussion such as ongoing research into the data.
* Thread for possible issues and ideas about data retention and future access to data.
* Treatment ideas - should they be separate or linked to gene pathway threads.

What do people think.
Click to expand...
Thanks, mods have already been considering how to manage this. We will try to ensure threads are focused and links provided between threads. Since we don't know yet how significant the results are, it's hard to know how the discussions will go. Mods will probably do some rearranging if there's a lot to discuss.
 
Really appreciate the heads up, and eternally grateful to all the team @Andy regardless of the results.

I'd like them to know that from my perspective, they have been part something more than research. They have played a significant role in restoring a sense of humanity to me.

It's hard to believe the day is almost upon us, and I'm preparing for it to be emotionally challenging. So when I'm able is it OK to send a thank you email to the team? I wouldn't want the University server to be flooded with emails! If not, I'll send a card by pigeon post.:)

In the meantime, please thank them, and yourself, for it will not have come without a cost.
 
Absolutely. Huge thanks to the whole team.

It feels like a big day for us all. But for the team involved in all these years of preparation and work it must be significant, especially with all that effort and no doubt a feeling of a weight of responsibility to get it right (which is clear from the care and detail put into the project).

Speaking of which, if anyone is twiddling their thumbs I can’t recommend the Data Analysis Plan enough. I’ve said it before but it’s really illuminating and great preparation for the paper dropping I think.

If you’re unable to read the full thing that webpage has an overview and the full pdf has a short lay summary.
 
Maat said:
Really appreciate the heads up, and eternally grateful to all the team @Andy regardless of the results.

I'd like them to know that from my perspective, they have been part something more than research. They have played a significant role in restoring a sense of humanity to me.

It's hard to believe the day is almost upon us, and I'm preparing for it to be emotionally challenging. So when I'm able is it OK to send a thank you email to the team? I wouldn't want the University server to be flooded with emails! If not, I'll send a card by pigeon post.:)

In the meantime, please thank them, and yourself, for it will not have come without a cost.
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Thanks for the kind words Maat, JemPD, and everyone else.

The direct email address for the study is decodeme@ed.ac.uk; messages can also be sent via the contact page on the website here.
 
JemPD said:
'We found no genetic links or associations', or 'we found only a tiny association which could easily be noise/down to another confounding factor'
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I'm guessing there wouldn't be an embargoed press pack and an announcement to participants with no prior ground preparation if there was nothing useful.

There'd be great value in it even if the genetic findings were entirely negative—it's a unique trove of patient data—but I suspect there are interesting and potentially actionable findings.
 
Kitty said:
There'd be great value in it even if the genetic findings were entirely negative
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Exactly. This is one of those studies that will tell us something useful, maybe even important, regardless of the actual results.

Strong, weak, null. They are all meaningful outcomes that will help focus future research efforts.

All that matters is that it is methodologically robust.

Thanks to @Andy and the DecodeME team. :thumbup:
 
I'm very thankful for all the hard work your team put into DecodeME. I've been following it for so long and finally the results are coming out. I can't wait to see what it is. I don't expect a negative result at all. Not with 20k people. I predict that the genes they find will primarily be immune-related, then neurological genes, then miscellaneous other stuff. Probably several that were brought up in earlier studies.
This is gonna bring us more questions than answers...but we'll have better research questions and hopefully researchers will begin working on how some of those genes lead to ME/CFS.
 
A few time zones.

Thu, 7 Aug — mostly middle of the night, so something to wake up to if any sleep is forthcoming ;)
Auckland 06:00
Sydney 04:00
Melbourne 04:00
Perth 02:00
Tokyo 03:00
Beijing 02:00

Wed, 6 Aug
New Delhi 23:30
Berlin 20:00
London 19:00
New York 14:00
Los Angeles 11:00
Vancouver 11:00
Honolulu 08:00
 
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