We are almost launched.

 

Launch time is *almost* here! We hope you're as excited as we are about the study opening in the new year. (Reminder: recruitment launches in two phases - the first in January.) Here's the quick headlines from our recent updates, in case you're low on energy or time. (Otherwise scroll on for full details and images.)    New behind-the-scenes blogs: What have we been working on this month?   Exciting! We've been testing spit kits ahead of launch.  Catch up on updates:  Missed last month's webinar? You can watch, listen or read the presentations and Q&A. It includes an apology from scientist Chris on study delays, and patient Sian explaining how patients are at the heart of this study. Help tell others about the study: Use these graphics, social media headers and captions to help spread the word about the study, encouraging others to sign up.

Behind-the-scenes blogs:

With over 28,000 people from all over the UK waiting for their invite, we’re working hard to make sure this large science study runs smoothly.     Read the blog

The DecodeME team is testing spit kits, ahead of our launch in the new year.    This includes the process of giving a saliva sample (containing your DNA) & posting it back. We’re making sure saliva samples reach us safely before we roll out the study. Over 600 people from the UK alone registered their interest in the study last week after seeing these pictures, so thank you to everyone who has shared our update.   Please note: not everyone with ME/CFS will be eligible for the spit kit stage, which is part two of the study. The first stage is a symptoms questionnaire, which should help scientists understand more about ME/CFS.   Read the blog

Anna (patient & team member): Tests the spit kit from her bed

“We are so often left out of these [ME research] conversations, not least because we are too unwell to participate,” says Anna (M.E. myself and I) - a member of the #DecodeMEstudy team, helping test our spit kits. Note: only team members are receiving test kits at this point.

Missed last month's webinar? Catch up now   Our Principal Investigator Chris apologised for launch delays. We know people with ME/CFS have waited a long time for a study like this, and you've been telling us this apology meant a lot to you.   ME patient and advocate Sian explained how Patient and Public Involvement (PPI) is truly transforming research, including ensuring people with severe symptoms are included in DecodeME.   Watch November's webinar

Can you help recruit more people with ME/CFS to the study? Use these graphics, social media headers and captions to help spread the word about the study, encouraging others to sign up. (Posters and profile picture frames coming soon.) We couldn't wish for a better response from the community and we can't wait to share the study with you.    Thank you for your continued support and patience. The team will be taking a break for Christmas and New Year. We'll be in touch in the new year. Wishing you a peaceful festive period. Dani and the DecodeME Team.

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