DecodeME Initial Results Webinar, Thurs Aug 14th, 3:30pm

[Sasha]

Wanted to pull this out of the DecodeME discussion thread, for those who won't be looking at every message in what is quite a technical discussion!

DecodeME Initial Results Webinar, Aug 14, 2025 03:30 PM BST

Register for Zoom access (limited spaces available) here, this will also be live streamed on Facebook, and will be uploaded to YouTube afterwards.

 

[Andy]

If you have any questions about the study, post them here. Can't guarantee that they will answered but I will pass them on to the team to be included in the list of possible talking points. Please also keep them, wherever possible, to a single sentence.

 

[Sasha]

Thanks, @Andy. Big question - how can the ME/CFS community help move things forward now, in particular on this genetics research?

How can S4ME in particular help? (This latter is maybe not so much a question for the webinar as for Chris Ponting.)

 

[Sasha]

Also, just plain old 'What's next?'

 

[hotblack]

Will you be looking at stratified analysis by severity to see if this changes the genetic signals found or the strength of them? The Data Analysis plan seemed to indicate 2k was enough to do this for co-morbidities.

 

[EndME]

Thanks, @Andy. Big question - how can the ME/CFS community help move things forward now, in particular on this genetics research?

How can S4ME in particular help? (This latter is maybe not so much a question for the webinar as for Chris Ponting.)

Yes, how can we help?

Maybe there's also some things the authors can't ask directly for, because it then creates circular arguments, but maybe some SequenceME specific fundraising intitatives (gofundme style) or petitions (change.org style) could highlight the demand and backing on the patient/population side of things? There also used to be some billboard campaigns, maybe some of that, or rather put the money straight into fundraising?

 

[V.R.T.]

How do we progess from where we are now to drug targets and treatment trials?

 

[hotblack]

From another thread and perhaps too forward looking for this webinar, but some questions on SequenceME and exactly what the plans are as there seems to be some discrepancies which some of us are unclesr on

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.

https://megenetics.org.uk/our-projects/sequence-me-long-covid/

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?

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 which mentions 17k giving permission and doesn’t mention new recruitment of a LC cohort

SequenceME: first of a kind genetic study - Action for ME​

 

[Kitty]

Suggestions for the webinar:

Could you talk about the options for further work on the existing data, and what it might be able to reveal?

Has it raised questions we hadn't thought about asking?

What would be your top three things to do next, if you had the resources?

 

[Sasha]

What would be your top three things to do next, if you had the resources?

I like this one!

 

[hotblack]

Has it raised questions we hadn't thought about asking?

That’s good. Another possible positive opener could be something like: What has surprised you most about these results?

How has patient involvement improved the project/made it different and/or more successful than it would have been without?

Is there anything you’d do differently now after this experience? Has the project taught you anything about how to run projects like this successfully?

What message do you have for government funding agencies in this country and around the world?

(Okay these are maybe a bit more about PR but still… useful at this point).

 

[Beth]

In the FAQs it says other projects of around this size commonly found around five causal links, does the fact they found 8 have any significance/meaning about the disease or research?