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

Sasha said:
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.)
Click to expand...
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?
 
Last edited:
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

Simon M said:
Not sure - 2-3 years?
Click to expand...
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.
Click to expand...
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?


V.R.T. said:
The long covid aspect of SequenceME seems to be new since the announcement if I'm not mistaken?
Click to expand...
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
www.actionforme.org.uk

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

 
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?
 
Kitty said:
Has it raised questions we hadn't thought about asking?
Click to expand...
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).
 
As I posted on another thread, in reference to this statement,

We also tested for associations using only cases who did not report infection at onset (5,841 cases and 259,909 controls; ‘GWAS-No-Infection’). This yielded no significant associations (Table 3).
Click to expand...

Please discuss the significance of this GWAS result, keeping in mind that "not reporting an infectious onset" only means they patient does not remember having symptoms of an infection, but the infection could still be occuring…
 
Kitty said:
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?
Click to expand...
This. To me, everything now has to focus on being forward looking, what's next? how do we make that happen? - Ok, I'll let them have 30 seconds on the outcome of Decode :)

We've gone from a community where 'Decode is coming' to 'Decode is done', and there's nothing much else happening - my biggest gripe of the last however many years is that there's been nothing much happening in parallel to Decode in case it didn't show anything.

It could take years to get new researchers actually interested, so is SequenceME next? What are AfME and Decode researchers doing to get others interested - based on the end of Decode funding being imminent, the likelihood that this task falls to AfME doesn't exactly fill me with confidence :emoji_grimacing:.

Most of which is probably beyond the planned scope of the webinar.
 
Another thought that occurred is whether, after doing a Zoom presentation for people with ME/CFS, they're thinking of doing one for clinicians and researchers?

Might be off-target because that's not really the way things work, but I thought I'd mention it.
 
You must log in or register to reply here.
Back
Top Bottom