important DecodeME update #5 …
decodeME are doing a series of information posts in the lead up to the start of the DecodeME study. They are encouraging us to share them as much as we can.
Therefore, I will share them each time they are posted …. exactly as they are originally written by,
Blog article to follow is Copyright © DecodeME (2021).
Updated March 2022. From https://decodeme.org.uk
DecodeME testing phase has launched!
Since DecodeME – the biggest ever study into ME/CFS – was announced, tens of thousands of people have been patiently waiting to take part. A project of this size and nature takes an extraordinary amount of work. Delays and setbacks are inevitable but, in January 2022, we launched the study – starting with a small amount of people.
In Phase One, we are focusing on participants who requested a paper questionnaire as the first part of the process. This is an alternative to the online questionnaire that the majority of people will use when we enter the wider recruitment phase. Some people chose the paper format because it is less taxing on their symptoms, others because they felt more confident using paper, and others had no access to technology. We encourage all those who can, to use the online questionnaire, when it’s available, because this will help us reach our goal of 25,000 participants as fast as possible.
Our team has been on standby to provide help and practical assistance for those taking part in this initial phase. We’re answering questions from participants and even enabling people with Severe ME to give their responses over the phone, recorded by Helen from the 25% M.E group.
This study has been meticulously designed, with huge amounts of input from people with lived experience of the illness, to ensure recruitment is as accessible as possible for people with all severities of ME/CFS. However, this initial phase is crucial to ensure the system is functioning as it should be, before it’s rolled out to a wider pool of participants.
The people who have been recruited at this early stage will be providing feedback on their experience, ensuring the team can listen and learn, and if necessary, take further steps toward improvement. So far, this initial phase has focussed solely on the questionnaire part of the process which will determine individuals’ eligibility for this study, but these Phase One participants will soon be providing their DNA samples and giving their feedback on the spit kit process too.
We’re still in the early stages of the overall process, but this is a really exciting time – not only for the team, but for participants too. It’s been especially moving to speak to these first participants and hear their own excitement at being involved, knowing that they’re contributing to one of the biggest studies into ME/CFS in history in a way that’s safe and inclusive for their needs.
We are so grateful that people have been willing to use their invaluable time and energy contributing to the study and providing feedback… and the countdown is on until wider recruitment begins
Thank you so much for your patience. We can’t wait to share the study with you soon.