OrganicChilli
Senior Member (Voting Rights)
I was able to watch it without an account.
DecodeME Initial Results Webinar, Thurs Aug 14th, 3:30pm
I was able to watch it without an account.
Daisymay
Senior Member (Voting Rights)
Thanks you very much indeed Andy for all your work and care over these years on DecodeME xUmmm, you are welcome?
I don't have a Facebook account and couldn't watch it using the link @Andy provided but I could watch it by clicking play on the embedded video in this thread. Once it starts playing you can expand it to full screen.
Maybe @Andy could let people know in the post with the video that if they don't have a Facebook account not to use the link to Facebook but to watch the embedded video.
Edited to add: I’m mistaken, I can watch it on Facebook too. I just can’t scroll down very far before the log in screen pops up.
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Andy
Senior Member (Voting rights)
I think as long as you make it freely available and clearly attribute the source, as I'm sure you would, then I can't imagine there would be a problem.
hotblack
Senior Member (Voting Rights)
Great, thanks.
I’m just posting in this thread so people should be aware of the source but it’s the DecodeME team from their webinar on their facebook page and it’s a pcloud share so freely available
DecodeME Initial Results Webinar.mp3 - Shared with pCloud
Store, share and listen to music with pCloud. Access on any device. Create a free account now!
Simon M
Senior Member (Voting Rights)
I don't know if the Webinar info on SequenceME and Long Covid has been discussed before. I found it pretty interesting
transcript:
CHRIS
DecodeME is only finding some of the genetics. Sequence ME and Long Covid would find more of the genetics beyond what we've already found and that is because it's able to see things that DecodeME was never able and never designed to do, in large part because DecodeME does not look at the rare genetic variants that we all carry with us in our DNA, it was only supposed to look at common DNA variation.
And then secondly, there are large changes in our genomes called structural variations that are invisible to the DecodeME method but are not to the sequencing method.
There is a third aspect, which is to do with DNA methylation, and that comes for free using the Oxford Nanopore Technologies approach of long-read whole genome sequencing.
But the main key attributes for this study is that it will, if funded, provide far more precision as to which are the genes that contribute to ME risk, because we can intersect the genes that are affected by the rare variation, and the genes that have been indicated in DecodeMe, using the common variation and those two together should provide us with a greater degree of precision as to which of the genes are involved.
The emphasis on the precision in identifying which genes contributes chimes with this:
Chris said about Ewan Birney
" t"he's] a co-principal investigator on this who has been a long-term advisor for Oxford Nanopore Technologies and is a very eminent member of the genomics, genetics, and biological communities in Europe.
Birney is Executive Director of the European Molecular Biology Lab (EMBL), and non-executive director of Genomics England, among many things
en.wikipedia.org
So that looks like an impressive addition to the team (or was he part of it before?)
Chris added that bringing ME/CFS from the backwater to the forefront is part of the ai:
"We've talked about how the DecodeME study could have been done 15 years ago. This study, the whole genome sequence using this technology, has not been done at this scale for any disease, so this would be a remarkable achievement, if possible, to provide whole genome sequences for the DecodeME participants."
transcript:
CHRIS
DecodeME is only finding some of the genetics. Sequence ME and Long Covid would find more of the genetics beyond what we've already found and that is because it's able to see things that DecodeME was never able and never designed to do, in large part because DecodeME does not look at the rare genetic variants that we all carry with us in our DNA, it was only supposed to look at common DNA variation.
And then secondly, there are large changes in our genomes called structural variations that are invisible to the DecodeME method but are not to the sequencing method.
There is a third aspect, which is to do with DNA methylation, and that comes for free using the Oxford Nanopore Technologies approach of long-read whole genome sequencing.
But the main key attributes for this study is that it will, if funded, provide far more precision as to which are the genes that contribute to ME risk, because we can intersect the genes that are affected by the rare variation, and the genes that have been indicated in DecodeMe, using the common variation and those two together should provide us with a greater degree of precision as to which of the genes are involved.
The emphasis on the precision in identifying which genes contributes chimes with this:
In other words (and if I have this right), the rare variants might be more revealing of which genes amongst those already flagged by DecodeME, rather than of finding a slew of rare diseases behind ME/CFS.
Chris said about Ewan Birney
" t"he's] a co-principal investigator on this who has been a long-term advisor for Oxford Nanopore Technologies and is a very eminent member of the genomics, genetics, and biological communities in Europe.
Birney is Executive Director of the European Molecular Biology Lab (EMBL), and non-executive director of Genomics England, among many things
Ewan Birney - Wikipedia
So that looks like an impressive addition to the team (or was he part of it before?)
Chris added that bringing ME/CFS from the backwater to the forefront is part of the ai:
"We've talked about how the DecodeME study could have been done 15 years ago. This study, the whole genome sequence using this technology, has not been done at this scale for any disease, so this would be a remarkable achievement, if possible, to provide whole genome sequences for the DecodeME participants."
hotblack
Senior Member (Voting Rights)
I hadn’t noticed but then again only just looked into who he was when you flagged it. Looks like a very handy person to have as part of the team!
Really interesting, so it’s less a case of the rare variants completely changing the picture or being independent of the common variants found, but more that they fill in more missing parts of an already partially formed picture, extra pieces to a half completed jigsaw?
I asked this earlier and it seems a bit wide of the mark but perhaps relevant
Kitty
Senior Member (Voting Rights)
Might there be a bit of both?
Rare variants are rare, but it's not rare for individuals to have some. There might be patterns or pointers there, e.g. a scatter of variants showing up in the same region that on their own wouldn't attract any attention.
Rare variants plus methylation info will be really informative .
We' ve got the edges of the jigsaw with DecodeME , these help fill in the picture .
ahimsa
Senior Member (Voting Rights)
FYI, here's the YouTube link, it's on the DecodeME channel:
I thought this link had already been posted but I can't find it so I'm just posting it here.