What (maybe home-based) useful new research could be done using the DecodeME cohort?

I think that any continuation would need to think of how to keep those flagship aspects/that control and transparency/privacy etc in place

Yep, absolutely. The PI would still be the lead, though, and would need to write it up at the end anyway. I imagine that would be covered by the original grant, as it's a big job that gobbles up a lot of time.
 
One pretty easy and useful project would be to recontact people in say 3 years, 5 years and then 10 years (or similar) to understand more about recovery rates. There might be some bias w.r.t. certain groups being more likely to respond etc but that'd be something that would require close to no work.

I’m reminded of the m.e observatory work with the severely affected in the 2000s. People were just followed up to see outcomes but nothing else was done to help the community. I understand need for checks but In the context of virtually no other research, this type of thing in my opinion is unethical, we aren’t lab rats& most people will want to take treatments as they come up and finding treatments, for most, is the priority, people want to feel less ill and function more and have better lives. so as human tests they won’t be available for “natural course” studies.
 
I’m reminded of the m.e observatory work with the severely affected in the 2000s. People were just followed up to see outcomes but nothing else was done to help the community. I understand need for checks but In the context of virtually no other research, this type of thing in my opinion is unethical, we aren’t lab rats& most people will want to take treatments as they come up and finding treatments, for most, is the priority, people want to feel less ill and function more and have better lives. so as human tests they won’t be available for “natural course” studies.
I think it’s not uncommon to have projects where you follow a group of patients for a long time just to see what the trajectory of their disease looks like. I don’t think participating in such a trial would exclude them from participating in others.

But I agree that we need much more than just those studies.
 
I will elaborate on why I had this idea that keeping things short in a "follow-up progression survey" might be smart.

If one believes that the DecodeME sample is a representative sample of how diagnosed ME/CFS looks like, I have the impression that to be able to get a look at how recovery rates from diagnosed ME/CFS looks like that should be similarly representative, you'd want to ensure that as many as possible people from the original study would also take part in the follow-up. I think you'd otherwise just risking the study being bised by all sorts of other factors and end up not telling you more than we already know.

There's reason to think that even within such a follow-up study there'll already be various biases. For example people that get significantly worse (having to move in with their parents or in a care home) or significantly better (adapt their living situation to their life) are probably more likely to moves homes and as such might a priori be less likely to respond to a follow-up because they might not be reached via post anymore. Something similar might apply to younger vs older people (with older people generally being less likely to move) that have recovered. I think it might be interesting to know how people have opted to be able to be recontacted, my impression was it was either by mail or post but I might be wrong.

I also think that a pure "follow-up progress survey" is probably going to suffer from less people participating, because whilst DecodeME had the opportunity to answer direct biological questions on ME/CFS a follow-up progression wouldn't tell you anything about biology directly so will likely be less enthusiastically answered. Keeping things simple might ensure that you'd still get a somewhat representative sample. The alternative approach would be to combine the "follow-up progress survey" with some biological samples to encourage enthusiasm or to do what I describe in the bolded text below. People that have recovered might also generally be less likely to participate if they've lost interest in ME/CFS research in general or have people that have received an alternative diagnosis that describes their situation more accurately might not be as interested in participating etc.

Something that might actually be the most interesting part about such a follow-up survey besides getting better rates of prognosis: You could re-analyse all the genetic DecodeME data of those people particpating in the follow-up but now including variables such as "recovered, declined, stayed the same" to see if these pwME actually have different genetic signatures. I think this seems like a very good idea!

Regarding encorporating things like FUNCAP. This sounds interesting. Looking at FUNCAP 27 one might think that it could suitably capture recovery rates, but I think some problems might be that FUNCAP hasn't been verified to assess recovery rates (maybe you'd end up get similar problems as with other subjective outcome measures) and there's potentially a problem with the original DecodeME study not having FUNCAP data so you don't get a clean "before and after" picture", so potentially there's even easier ways to try to keep track of recovery without having people answer the somewhat lengthy FUNCAP to keep things shorter.
 
@Andy what would be necessary for the DecodeME data to stay available for say another 10 years? For example say someone wants to re-invite all participants in 5 years and wants to re-run all the genetic data including variables such as "recovered, stayed the same, got worse", what would be necessary for that to stay possible?
 
@Andy what would be necessary for the DecodeME data to stay available for say another 10 years? For example say someone wants to re-invite all participants in 5 years and wants to re-run all the genetic data including variables such as "recovered, stayed the same, got worse", what would be necessary for that to stay possible?
Continuity. It would need somewhere where the data can be stored, and people to process any application and distribute the data. At the moment it is stored on servers at the University of Edinburgh, there is a data access committee to review applications, and UoE staff who can process successful applications, but it is currently not clear for how long all of that continues after the end of August.
 
Continuity. It would need somewhere where the data can be stored, and people to process any application and distribute the data. At the moment it is stored on servers at the University of Edinburgh, there is a data access committee to review applications, and UoE staff who can process successful applications, but it is currently not clear for how long all of that continues after the end of August.
Would it be possible to essentially place it in cold storage? I.e. to make it inaccessible but still stored until someone can act as stewards? It seems like a tremendous waste if the data just got deleted.

And do they have digital contact info for the participants like phone or email?
 
I'm imagining if a treatment was widely released and tried with a portion of people recovering and a portion not. There's a good chance there'd be different DNA signals in the two groups that become much clearer when they are looked at separately. And it'd be much cheaper to hold on to existing DNA data than going on to do a whole new GWAS of "treatment-resistant ME/CFS" in the future.

Edit: Also, it might be valuable to see what's going on in the DNA of responders, but it's unlikely they'd be very motivated to participate in a new study if they're already well.
 
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Would it be possible to essentially place it in cold storage? I.e. to make it inaccessible but still stored until someone can act as stewards? It seems like a tremendous waste if the data just got deleted.

And do they have digital contact info for the participants like phone or email?
That is the back-up plan assuming that we can't find a better solution.

And yes, contact details are stored to enable recontacting when appropriate.
 
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