Closed UK: DecodeME updates, was recruitment thread.

I was delighted to be reminded what a huge percentage of people had signed up to have their de-identified data shared and to be contacted for further research. Big win!

Can't wait to see the results...

 

Thanks for the update @Andy

I have a dim memory of Chris saying somewhere, can't recall where not so long ago, that there were disappointingly few external parties applying to access the DecodeME data for their own studies. Has interest picked up? If not, what can we do in the new year to help things along?

Other than that sounds like you're making good progress

 

No, interest hasn't yet picked up, although we suspect that it will once we publish the genetic results.

Pointing out that the data is available to researchers that you might be in touch with? Or if you do social media then sharing the information there might just attract attention.

 

I understand the frustrations but I am currently unable to reveal any further details, other than confirming that, just like with our initial questionnaire analysis, we intend to preprint our results when we can.

 

Hi @Andy, I'm aware that precisionLife has been granted access to the DecodeME data. Are you aware of any requests to use the HEAL 2 algorithm, that was recently used in the Zhang et al paper, on the DecodeME data?

 

Hi. The public details that DecodeME has on projects that have had access approved can be seen here, https://www.decodeme.org.uk/approved-studies/. For confidentiality reasons we wouldn't want to reveal any more information than that is available there.

ETA: Added missing "than".

 

Thanks, I expected as much, but maybe some cryptic messages on S4ME are motivation enough for someone to apply to do this work.

 

It may be worth seeing my question and Andy’s response in the Zhang paper thread too.

 

Thanks for this link @Andy I hadn't seen these before. I'm encouraged particularly by the Uni of Glasgow project

 

Is this data resource helping to gradually increase the pool of researchers taking the biomedical aspects of ME/CFS more seriously and increasing the useful knowledge base beyond the incurious repetition of the BPS research based on misinterpretation of experimental bias as a justification for their psycho behavioural interventions?

 

I am very excited by this. I have long been interested in the possibility that HHV-6 is a key factor in ME

 

@Andy I'm not sure if I ticked the box to allow my data to be used by other researchers when I sent off my sample. I think I may not have done as I was a bit unsure what it meant. I would now like to give permission for this if I haven't already. Do you know if it is worth contacting DecodeME or would it not be possible for them to change it at this point anyway? If you're not sure don't worry - I'll just email them! TIA, Tia.

 

It is worth contacting them

https://www.decodeme.org.uk/faqs/can-i-change-my-consent-choices/

 

Yep, that is what I would have said. Thanks hotblack.

 

Brilliant, thanks @hotblack and @Andy . Reading that link, I think it was maybe the bit about giving access to NHS records that I didn't give permission to as I wasn't sure how much personal information that would include. I'll definitely message them though just to check I gave permission for my data to be shared with other researchers.