Closed UK: DecodeME updates, was recruitment thread.

[Andy]

@Andy im pretty close with several reporters in the U.S. who have covered ME & LC over the years. If these connections can help with any media coverage of this (if results dictate) just let me know and I can reach out to any to gauge interest

Thanks for the offer. At this stage the easiest thing I think would be if you sent them the preprint or a link to the DecodeME site once it is out.

 

[Sasha]

Thanks for the offer. At this stage the easiest thing I think would be if you sent them the preprint or a link to the DecodeME site once it is out.

Wouldn't it be better if the DecodeME team could send them the press release (I'm assuming there must be one)?

 

[MrMagoo]

Wouldn't it be better if the DecodeME team could send them the press release (I'm assuming there must be one)?

But that would be a lot more work to gather their addresses, ask about adding and then get the media person at Decode add them to whichever database is dealing with media in the next 24hrs (and across time zones)

 

[Jaybee00]

Is it typical to do press for a preprint?? Usually this happens when a paper is published.

See here

https://www.sciencemediacentre.org/wp-content/uploads/2019/11/Best-practice-guidelines-on-preprints-and-publicity.pdf

 

[Jonathan Edwards]

Is it typical to do press for a preprint?? Usually this happens when a paper is published.

See here

https://www.sciencemediacentre.org/wp-content/uploads/2019/11/Best-practice-guidelines-on-preprints-and-publicity.pdf

Who are they to advise. They are just a bunch of political activists who got the ear of governments and spread the opinions of their cronies. Maybe they are miffed that MECFS researchers would prefer to have nothing to do with them.

It adds another good reason to put out a press release with the preprint - to stick some fingers up. Of course there is no doubt that some people put out preprintsc without due care but then the SMC has continually done that.

 

[Andy]

Is it typical to do press for a preprint?? Usually this happens when a paper is published.

See here

https://www.sciencemediacentre.org/wp-content/uploads/2019/11/Best-practice-guidelines-on-preprints-and-publicity.pdf

Really? You are quoting the SMC as evidence for the "best practice"?

 

[Jaybee00]

Strange or not, SMC was the first hit that showed up on a google search.

 

[Sasha]

Two hours to go. We should probably all have a big lie down in preparation.

 

[StellariaGraminea]

Seems to me it would be important to have a press release with the preprint... not let the narrative be stolen by other nefarious actors such as the abovementioned.

 

[hotblack]

Seems to me it would be important to have a press release with the preprint... not let the narrative be stolen by other nefarious actors such as the abovementioned.

Definitely. It’s spin or be spun. It may not be pretty but it is how things often work. Important that it’s backed up but the messaging is part of things.

 

[MarcNotMark]

Why do we have so many guests today?

 

[Yann04]

holy wow, thats a lotta guests!

 

[Jonathan Edwards]

Maybe need another cake?

 

[szrk]

Anyone else refreshing everything excitedly?

 

[hotblack]

Apparently Chris Ponting is on BBC Scotland at 1900 to discuss the Decode results.

I just saw him in the online users list here so I guess it’s pre-recorded? Or he’s multitasking.

Maybe need another cake?

What sort of cake do robots eat? We don’t want to leave them out.

 

[jnmaciuch]

Where can we start discussing genes? Has that thread already been made?

 

[Trish]

We need someone to find the preprint and make a thread.

 

[Alinda]

https://www.research.ed.ac.uk/en/publications/initial-findings-from-the-decodeme-genome-wide-association-study-

 

[Nightsong]

In these GWAS, we discovered eight loci that are significantly associated with ME/CFS, including three near BTN2A2, OLFM4, and RABGAP1L genes that act in the response to viral or bacterial infection. Four of the eight loci (RABGAP1L, FBXL4, OLFM4, CA10) were associated at p < 0.05 with cases ascertained using post-exertional malaise and fatigue in the UK Biobank and the Netherlands biobank Lifelines. We found no evidence of sex-bias among discovered associations, and replicated in males two genetic signals (ARFGEF2, CA10) discovered in females. The ME/CFS association near CA10 colocalises with a known association to multisite chronic pain. We found no evidence that the eight ME/CFS genetic signals share common causal genetic variants with depression or anxiety. Our findings suggest that both immunological and neurological processes are involved in the genetic risk of ME/CFS.

 

[Yann04]

We found no evidence of sex-bias among discovered associations, and replicated in males two genetic signals (ARFGEF2, CA10) discovered in females.

Interesting