DecodeME blog: X marks the spot where ME/CFS biology can be discovered

Yes, these specific parts:
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Edit: Seems to pretty much be all over the brain though.
That part definitely stuck out to me. The fact that the set of genes is enriched across all those regions in the brain cumulatively suggests that (if it is the neurological function of these genes that matters) it’s something about general functioning of a neuron-type cell, rather than a specific neural function or part of the brain like the hypothalamus, that might predispose someone to ME/CFS.

Unfortunately these results don’t give any indication of where that relevant function might be. It’s also just as likely that this signature is relevant in the peripheral nervous system rather than the central nervous system.
 
Not sure - 2-3 years?
Is this because of analysis time or the need to get more samples?

The team already has the DNA of 9,000 people with ME from DecodeME who gave permission for part of their DNA samples to be kept back for sequencing. The study will also need to recruit 9,000 people with Long Covid. It will collect DNA samples from them using the same ‘spit and post’ design as for DecodeME.

What are the pros/cons from a scientific or funding perspective of including a new cohort of LC patients?
Would it be possible to do analysis of existing ME/CFS samples in parallel to get results which can be acted upon sooner?
Presumably saliva from the other 9k participants in DecodeME who didn’t give permission has been disposed of so it’s too late for them to change their mind? Could they be recontacted and resampled if more samples are needed?
(Maybe these are best directed to the DecodeME team, but next weeks webinar maybe seems the wrong time/place)
 
Is this because of analysis time or the need to get more samples?



What are the pros/cons from a scientific or funding perspective of including a new cohort of LC patients?
Would it be possible to do analysis of existing ME/CFS samples in parallel to get results which can be acted upon sooner?
Presumably saliva from the other 9k participants in DecodeME who didn’t give permission has been disposed of so it’s too late for them to change their mind? Could they be recontacted and resampled if more samples are needed?
(Maybe these are best directed to the DecodeME team, but next weeks webinar maybe seems the wrong time/place)
The long covid aspect of SequenceME seems to be new since the announcement if I'm not mistaken?
 
The long covid aspect of SequenceME seems to be new since the announcement if I'm not mistaken?
I think you’re right, the numbers and emphasis seem different from this announcement
 
I think you’re right, the numbers and emphasis seem different from this announcement
Yes! Interested to know what the rationale was but I think side by side comparison of ME and LC like this could be very valuble.
 
Maybe these are best directed to the DecodeME team,
Yup. But I'm happy to offer some guesses :)
Is this because of analysis time or the need to get more samples?
My estimate was guesswork, and assumed that the longest time would be needed for the sequencing itself
Presumably saliva from the other 9k participants in DecodeME who didn’t give permission has been disposed of so it’s too late for them to change their mind?
I believe about 90% of people with who provided a sample gave consent for it to be used for other purposes, so will be retained. I think they're meant they have permission for the 9000 figure they had decided upon.
Would it be possible to do analysis of existing ME/CFS samples in parallel to get results which can be acted upon sooner?
That would seem logical. However, I'm not sure if there are batch effects as there are in GWAS genotyping. If there are, you probably want to sequence DNA from patients from both LC & MC at the same time
 
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