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Option two would be unlawful unless all participants gave permission for their contact details to be shared, which won't happen, so option two can't happen. It would have to be either option one or option 3, with explicit participant consent. I think the GLAD study does it in the way described...

Oh thanks Andy - sorry I didn't see your earlier comment or the GLAD study thread!

They just love a catchy title ;)

Example of a current GWAS study & recruitment strategy Apologies if people have seen this already. It is a study on anxiety and depression but bear with me... I told my doctor about the potential ME GWAS today and he told me about the GLAD study. It's a GWAS study funded (I believe) by NIHR...

Often the SMC have regurgitated press releases. The problem has often been that they have regurgitated those press releases written by Sharpe et al. So maybe care could be taken in the wording of the press release? Of course, at times they have added their 'specialists' opinions, which have...

Yup ☺️

Interesting. I get a fluey feeling immediately after minor exertion, as I am getting tired. But when I have a delayed PEM e.g. from a bigger exertion, I don't feel fluey, more like I have a terrible hangover, all my cells are raging, and I got run over by a truck. It feels like my whole body is...

Tha Thank you for your reply, and it's interesting to hear that you have had a similar experience. It has been ivabradine and low dose tricyclics that have changed my experience of PEM. My ME was post-viral (mononucleosis, sudden onset) and I was diagnosed as a 'classic case'. All tests...

Do you mean that 'fluey' feeling that happens when you start getting tired? I think this issue is confounded by how the condition can change over time. When I was mild I didn't get clearly delayed PEM. At first I felt ill (fluey, not tired) on exertion without PEM. Then I improved for a while...

Thank you Andy. Perhaps I'm just being over-anxious about this, but is the association that the GWAS will be looking for against the genes: 'having ME vs not having ME'? Or will it go as far as sub-phenotyping ME cases? One big reason I suggested additional questionnaires was because ME is...

Did they say why?

But I have said Multiple times that any additional questionnaires beyond those essential for the GWAS would be optional, and my idea would be that people, if they choose to complete them, would be given e.g. a couple of years to complete them. Does that not demonstrate an understanding of what...

I see your point. I think, because as you say we don't know what will be included in the compulsory questionnaires, it would be best for the PIs to select whichever they feel are most appropriate, in the context of what they have already planned. I agree that unnecessary extras would be a waste...

The point is the extra questionnaires would be optional. Would people be put off by optional questionnaires? If they don't want to do the optional ones, surely they just don't do them?

I think it would be a case of looking for any statistically significant associations between specific mutations and severity across the whole cohort, rather than individual cases. Of course there are many factors that affect severity - especially environmental factors which wouldn't show up in a...

Ok, so I have had a think about it and I would like to propose selection of additional optional questionnaires, if possible, from the NIH Common Data Elements. There would be no need to design or validate new questionnaires. There are quite a few validated instruments included in the Common...

Yes I think SF-36 would be good. I will have to think about others and get back to you. I think making the additional questionnaires optional and allowing participants a very long time to complete them (e.g. up to near the end of the study, which if someone was recruited early could be a couple...

No I don't mean the usual ones used by the BPS crowd. I mean anything that could be helpful for either adding context which may aid the interpretation of any genetic findings (e.g. gathering data on severity, disease course and symptom clusters may be useful to see if there are correlations...

Thank you very much for your reply, this is good to hear! Aside from being "recontactable" (which will of course be a great resource for recruitment into future studies), are there plans to have optional questionnaires within the GWAS study, beyond those that are essential, which could be...

One solution to this for early career researchers interested in going in to ME research might be that they specialise in a field that can contribute to ME research but which also covers other diseases which get grant funding. When funding is hard to come by for ME studies, they could have...