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We are only recruiting patients. We already have healthy control data from the UK Biobank.

Thanks Robert, I'll pass that back to the team.

People chosing not to allow us access to their medical records will not stop us asking those people for their saliva sample. The decision on whether we ask for a saliva sample or not comes from the part of the questionnaire about your illness, not from the additional 'permissions' that you can...

Great short interview with Chris on Radio 4, https://www.bbc.co.uk/sounds/play/m001byy7, interview starts at 48:36

Hi, thanks for taking part. Access to medical records, while something that would be 'nice to have' for analysis of the data, is secondary to being able to analyse the genetic material from the saliva samples donated. Please take the time you need to make your decision but we'd prefer by far...

Thanks. I know that additional care was taken with the press releases and they included a list for the editors of what to do and not do i.e. do use ME/CFS, don't use CFS/ME and don't abbreviate CFS to "chronic fatigue". It's been very pleasing to see how much that was followed, although I think...

On the BBC News site, admittedly tucked away in the Edinburgh area section of the site rather than national section. Experts launch world's largest genetic study of ME, https://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-62876472

Hi Binkie, thank you for promoting the study to others. If you've not seen your email by now then I'm afraid it will have been lost in a corner of the internet somewhere. When you are ready to start the questionnaire, please visit https://www.decodeme.org.uk/portal/ and click on the "sign up"...

Hi. The projections that we used are explained in the study protocol, published here, https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-022-02763-6, and discussed here, Protocol: DecodeME: community recruitment for a large genetics study of ME/CFS, 2022, Devereux-Cooke et al The...

Hi BrightCandle. I'm checking with the rest of the team to make sure of my answer and I'll come back to you, most likely tomorrow now.

Hi Tia, I'm checking with the team and will get back to you as soon as possible.

Thanks Kitty, and thank you for being willing to be re-contacted in the future. The design of the study does mean that even if participants aren't asked for a genetic sample, they can still contribute in various ways.

Thanks for posting this Peter, it prompted us to post a reminder that there is no need to complete the questionnaire in one go. https://www.facebook.com/decodeMEstudy/posts/pfbid031znRB1fDSR5YC9CVyQgqx9ewW52DrQh8weHfgJSnxCunpgjKhDxcnzESDn3J2ou1l

Abstract Post-acute sequelae of severe acute respiratory syndrome coronavirus 2 (PASC) infection is particularly concerning to athletes who place a high premium on cardiovascular performance and competition. This initial case series shows the overlap between PASC and orthostatic intolerance in...

Thanks very much. It was, and still is, very much a fantastic team effort by all involved.

Should anyone on social media want an image to help promote the study, there is a selection available for download from https://www.decodeme.org.uk/share-on-socials/

Thanks for asking. I've double checked with the team and we definitely mean "less".

Definitely this. The questionnaire platform has been designed so that it is possible to save your progress and return to it, so that as many people as possible can complete it at their own pace, rather than needing to complete it in one go.

Apologies for re-using one of my existing posts but it seems pointless not to do so.

Background and Purpose Dyspnea, fatigue, and reduced exercise tolerance are common in post-COVID-19 patients. In these patients, rehabilitation can improve functional capacity, reduce deconditioning after a prolonged stay in the intensive care unit, and facilitate the return to work. Thus, the...