Webinar invitation 14 December at 11am

 

You’re invited to the next DecodeME webinar.    This webinar will be a chance to hear updates about the study's progress and have your questions answered. It’s on Thursday 14th December 11:00am (BST) on Zoom and Facebook Live.    There are only 500 spots to watch the webinar on Zoom, so please make sure you get there early as it can fill up quickly. Don't worry though, if you don't manage to get a place this time (this can happen even if you registered in advance), you can also watch on Facebook live via our Facebook page, or watch the recording when it becomes available on our website.

Register for webinar

Thursday's Webinar will be a chance to hear updates on the project including our plans for a second questionnaire.   Join Chris Ponting, Sonya Chowdhury and Andy Devereux-Cooke from the DecodeME team to hear the latest news and what's next for the project.   There will also be a Q&A session at the end. Send us your questions ahead of the webinar by replying to this email. If you can’t make the webinar, don’t worry. There will be a recording available afterwards on our website.   You can watch the recordings or read the transcripts from our previous webinars HERE.     Register for webinar

Warmest wishes, The DecodeME Team

DecodeME Study Newsletter

 

We have now closed all participant recruitment and would like to thank everyone who has given their precious time and energy to become a participant in DecodeME. Over 26,000 people have signed up and completed their questionnaire, and over 21,000 have been invited to provide a DNA sample. This is an amazing achievement. Watch our video message here.   We are absolutely delighted to be moving forward to the next stage with such a strong cohort of participants.   Thank you to everyone for your extraordinary participation!   As we now move on to the next stage of the study, our focus is on getting as many spit kits back as possible. We currently have around 4,000 spit kits that have been sent out and not yet returned.   If you have received your kit, but have not yet returned it, please do so by the 31 January 2024. As there can be unpredictable delays with the post, especially over the holiday season, please post your kit back to us as soon as possible and before this date, if you can.   If you have questions about returning your sample, then our FAQ page has a number of answers that might prove useful.   Each sample returned will strengthen the results of our research, so we really appreciate every kit sent back. Finally, for a fuller update on the study and what to expect next, you can watch our most recent webinar here. Subtitles, a transcript and an audio-only file are available. Thank you for supporting the study, we couldn’t do this without you! Warmest wishes, The DecodeME Team

Save the date!

 

We need YOUR HELP to ensure that together, we can keep providing care and support for you and all your friends and family living with M.E.   By donating during 28 Nov - 5 Dec, every penny goes twice as far with Big Give matching your donations and multiplying your impact.   For now, pop this date in your diary, we will be in contact with more information about our Big Give Christmas Challenge soon!   Follow us on our social media below for updates.

Top 3 unclaimed benefits

 Hello

Need some more money, want to know what you can claim.

The top 3 benefits that are not claimed are:

Universal credits, this is means tested, and puts all the benefits together, into one big one.

From applying to receive it,  its about 5 weeks, so you need to be careful financially.

You get paid once a month, this is to help people, to adjust to get getting back to work.

You have to have £16K in savings to qualify.

Citizens advice bureau, can help you to apply.

Council tax reduction

If your home is disabled friendly, you can apply for reduction on disabled friendly grounds, plus if you like a lone, you can apply for single persons reduction.

Water bill

If you are on low income, you can get 50% off your water bill.

I hope these help.

Miriam

12 October DecodeME Webinar

 

Thank you to everyone who was able to join us live on our recent zoom webinar.    Many apologies if the webinar was already full when you tried to join or you were hoping to watch via Facebook live.  We experienced some problems which meant the Facebook Livestream did not take place and we are very sorry about this.   You can watch or listen to the webinar content at your own pace. A transcript is also available.

Click here to watch a replay of the webinar

Watch the recording on YouTube. There are captions available, plus time stamps in the description to jump to different parts of the video.   The DecodeME website has lots of information on it especially in our Frequently Asked Questions section.   There are only a few weeks for people to sign up and complete their questionnaires so if you are able to share information about the project with anyone you know then there are lots of resources on our Ways to Share page Warmest wishes, The DecodeME team

Join the De code ME webinar

 

You’re invited to the next DecodeME webinar.    This webinar will be a chance to hear updates about the study's progress and have your questions answered. It’s on Thursday 12th October, 1:00pm (BST) on Zoom and Facebook Live.    There are only 500 spots to watch the webinar on Zoom for those who don’t have Facebook. But if you don't manage to get one in time, don't worry! You can also watch on Facebook live via our Facebook page, or watch the recording when it becomes available on our website.

Register for webinar

Thursday's Webinar will be a chance to hear updates on the project including the preliminary results from the questionnaire data. You can read the published paper HERE.   Join Chris Ponting, Sonya Chowdhury and Sian Leary from the DecodeME team to hear the latest news and what's next for the project.   There will also be a Q&A session at the end. Send us your questions ahead of the webinar by replying to this email. If you can’t make the webinar, don’t worry. There will be a recording available afterward on our website.   You can watch the recordings or read the transcripts from our previous webinar HERE.     Register for webinar

Warmest wishes, The DecodeME Team

DecodeME Study Newsletter

 

As we approach one year since DecodeME’s full launch, we’d like to update you on how things have been going.   Firstly, we can confirm that over 23,000 people have signed up and completed their questionnaire, over 19,000 of whom have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!   However, we are still only 75% of the way to reaching our goal, so we still need more participants! Please continue to help us spread the word to people with ME/CFS about the opportunity to take part in the world’s largest ME/CFS research study! You can find resources to help you do this on our Ways to Share page.   We recently became able to invite more participants to donate their DNA to the study, you can read more about this change in our blog post: Inviting More Participants to Donate DNA.   Initial findings from the DecodeME Questionnaire Data Published. Having analysed the questionnaire data from the first 17,000 participants, our findings, have been published by NIHR Open Research. You can read the summary of the findings on our blog.   DecodeME’s Investigator Professor Chris Ponting recently spoke about the study and the importance of ME/CFS research in Thomas McCann’s documentary ‘Living With ME’. You can watch the full documentary on YouTube. (Trigger warning: the full documentary contains conversations on suicide). If you haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit www.decodeme.org.uk/portal. Thank you for supporting the study, we couldn’t do this without you!     Warmest wishes, The DecodeME Team