SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

[forestglip]

Some posts have been moved to: Sequence ME & Long Covid now open for fundraising

 

[Andy]

Do we have estimations of how long SequenceME and Long Covid will take? I think someone estimated 18 months when it was first announced but that was when it was just going to be the analysis of DecodeME samples iirc. Obviously the LC collection phase will take longer.

If the project is modular, perhaps the DecodeME WGS sample analysis and LC things will happen separately. So perhaps you might see 18-24 months for the DecodeME part, and 2-3 years for the long covid part. But would they overlap? And will the LC part be one module or will collection and analysis be two?

The project's timeline is hugely dependent on if, when, and how much further funding is found. For example, there is a big difference between a scenario where the whole £20 million is secured in one go within the next 6 months and one where it takes a total of 5 years just to find funding for the individual work packages of the project.

The idea with it being modular is so that the entire amount doesn't need to be found to allow for progress to be made (although obviously multiple millions still do need to be found for each stage) but obviously this does make it more difficult to give a straightforward timeline.

However, with this 'kick starter' funding in place much work is being done and will include providing clearer communications to the timeline, and I don't want to provide my current best guess when something official should be available fairly soon.

Another important question - does the team plan to publish the DecodeME WGS analysis when it is ready, or only publish once the long covid samples are collected and analysed too?

Personally I would prefer that they published the DecodeME portion as soon as it is done so that some results could be shared fairly promptly and drive forward research, and then they can later be strengthened by/contrasted with the LC cohort.

Yes, the intention would be to publish the ME/CFS results without waiting on the results from the LC stage.