Closed UK: DecodeME updates, was recruitment thread.

[Andy]

10,000 DNA donors have now been invited to send us their spit!

https://www.facebook.com/photo?fbid=717873927007370&set=a.128908609237241

 

[obeat]

I've just seen an advert for Decode on the Belfast Live feed.

 

[NelliePledge]

I had a pop up DecodeME ad on the Guardian website

 

[Kitty]

I've seen several ads on Facebook, at least four or five different versions. The photos used have been really good.

 

[NelliePledge]

I emailed local Healthwatch links to Decode website asking them to post on social media. When I followed up a month later they said they have contacted Healthwatch national comms to see if they are allowed to post something about DecodeME under their comms criteria

Still not heard back from local Healthwatch about a response from national Healthwatch comms, so I’ve sent another reminder……..

 

[chillier]

I was just speaking to my british friend with long covid who is very integrated into the online community. I was surprised to find out they had never heard of DecodeME but are happy to share it.

I did a twitter search of some long covid accounts with large numbers of followers and found none of the ones i checked have ever mentioned DecodeME. The accounts and subscriber counts:

@EricTopol 686.2K
@maosbot 30.5K
@BinitaKane 28.8K
@long_covid 29.6K
@loscharlos 18.7K
@VirusesImmunity 213.5K
@ahandvanish 56.6K
@Daltmann10 24.2K
@jenbrea 40.9K

These accounts are big nodes on twitter some with over 100K subscribers. Granted many of them are not british but are likely to have brits in the subscribers. It could be good to ask them if they'd be happy to share DecodeME? Would mean much more coming from the decode ME team or a twitter user with much more clout in the online community than I have.

Good chance you guys @Andy have already considered this stuff ages ago so apologies for the backseating but I thought it was worth mentioning just on the off chance.

The twitter search i used just in case anyone wants to double check: (DecodeME OR decode OR GWAS) (from:MECFSNews OR from:EricTopol OR from:maosbot OR from:BinitaKane OR fromaltmann10 OR from:ahandvanish OR from:VirusesImmunity OR from:loscharlos OR from:long_covid)

 

[Tom Kindlon]

I was just speaking to my british friend with long covid who is very integrated into the online community. I was surprised to find out they had never heard of DecodeME but are happy to share it.

I did a twitter search of some long covid accounts with large numbers of followers and found none of the ones i checked have ever mentioned DecodeME. The accounts and subscriber counts:

@EricTopol 686.2K
@maosbot 30.5K
@BinitaKane 28.8K
@long_covid 29.6K
@loscharlos 18.7K
@VirusesImmunity 213.5K
@ahandvanish 56.6K
@Daltmann10 24.2K
@jenbrea 40.9K

These accounts are big nodes on twitter some with over 100K subscribers. Granted many of them are not british but are likely to have brits in the subscribers. It could be good to ask them if they'd be happy to share DecodeME? Would mean much more coming from the decode ME team or a twitter user with much more clout in the online community than I have.

Good chance you guys @Andy have already considered this stuff ages ago so apologies for the backseating but I thought it was worth mentioning just on the off chance.

The twitter search i used just in case anyone wants to double check: (DecodeME OR decode OR GWAS) (from:MECFSNews OR from:EricTopol OR from:maosbot OR from:BinitaKane OR fromaltmann10 OR from:ahandvanish OR from:VirusesImmunity OR from:loscharlos OR from:long_covid)

I tagged a full tweet full of people who actively tweeted about #LongCovid in this thread:

https://twitter.com/tomkindlon/status/1650591529147179021?s=46&t=fB55_-omyDIDREBokX-E6Q

I recall @ahandvanish did retweet or quote tweet one of them. Worth trying to get people like this to retweet alright.

 

[Tom Kindlon]

I was just speaking to my british friend with long covid who is very integrated into the online community. I was surprised to find out they had never heard of DecodeME but are happy to share it.

I did a twitter search of some long covid accounts with large numbers of followers and found none of the ones i checked have ever mentioned DecodeME. The accounts and subscriber counts:

@EricTopol 686.2K
@maosbot 30.5K
@BinitaKane 28.8K
@long_covid 29.6K
@loscharlos 18.7K
@VirusesImmunity 213.5K
@ahandvanish 56.6K
@Daltmann10 24.2K
@jenbrea 40.9K

These accounts are big nodes on twitter some with over 100K subscribers. Granted many of them are not british but are likely to have brits in the subscribers. It could be good to ask them if they'd be happy to share DecodeME? Would mean much more coming from the decode ME team or a twitter user with much more clout in the online community than I have.

Good chance you guys @Andy have already considered this stuff ages ago so apologies for the backseating but I thought it was worth mentioning just on the off chance.

The twitter search i used just in case anyone wants to double check: (DecodeME OR decode OR GWAS) (from:MECFSNews OR from:EricTopol OR from:maosbot OR from:BinitaKane OR fromaltmann10 OR from:ahandvanish OR from:VirusesImmunity OR from:loscharlos OR from:long_covid)

I just tagged the ones I had missed:

 

[chillier]

I just tagged the ones I had missed:

That's brilliant thankyou. You're right that if you scroll back far enough you can see @ahandvanish did retweet. There's no straight forward way to search for retweets by text of the embedded tweet that I could find so I missed that.

 

[NelliePledge]

Even if someone has shared on social media before their followers won’t all see the post especially on Facebook so always worth people asking people with high numbers of followers whenever there is a new DecodeME post to share.

 

[Dolphin]

 

[Dolphin]

 

[Dolphin]

Frustrating, though not sure they are in the UK anyway.

 

[JemPD]

Frustrating, though not sure they are in the UK anyway.

i recall there was a good reason for not sharing results.

 

[NelliePledge]

https://www.decodeme.org.uk/faqs/will-i-receive-my-dna-results/?seq_no=2

 

[Dolphin]

The latest e-newsletter from the ME Association is just on one item: plugging DecodeME.

 

[Sasha]

The latest e-newsletter from the ME Association is just on one item: plugging DecodeME.

That's fantastic - well done, MEA.

 

[Tom Kindlon]

This presentation has some data on recruitment e.g. “How did you hear about DecodeME?”
Data Dashboards: Conference presentation by David Perry on DecodeME (May 2023)
https://www.s4me.info/threads/data-...on-by-david-perry-on-decodeme-may-2023.33730/

 

[Andy]

New blog

Inviting More Participants to Donate DNA

• DecodeME can now invite even more people to donate their DNA.

• This is because we will apply an additional scientific method to ensure that our genetic findings are due to ME/CFS and not to common co-occurring conditions.

• This new opportunity came after reviewing our genetics analysis steps, and after positive discussions with our Scientific Advisory Board.

• The new plan will make DecodeME more inclusive and more likely to increase its number of discoveries

• DecodeME study criteria are still based on two internationally-applied sets of criteria, the Canadian Consensus and IOM Criteria, both of which require post-exertional malaise. Furthermore, participants are still required to have an ME/CFS diagnosis to participate.

• Some, but not all, participants who were previously unable to donate their DNA, will now be invited to do so by email.

Read more at https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/

 

[Trish]

That's exciting news. I hope lots more people will agree to donate their DNA.