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 November 2021. From https://decodeme.org.uk
Update: DecodeME launches in January 2022.
We have an important update on DecodeME’s start date.
DecodeME will launch in January 2022. Recruitment will happen in two phases. If you are in the UK and have registered your interest in taking part, we will email your invite when you can take part and send reminders, so you don’t miss it.
Thanks for registering your interest in taking part in the DecodeME study. We’re pleased to announce recruitment will start in January, and this will happen in two phases.
First, a test phase with randomly chosen participants allowing us to check everything is working well and get feedback. We will then open full recruitment to everyone soon after.
This is a few months later than we hoped. We know this wait feels like a long time when people with ME/CFS have waited so long for a study like this to happen. Thank you so much for bearing with us.
We are committed to ensuring this study delivers to the highest standard possible, with maximum impact for people with ME/CFS. This means that some tasks have taken longer than expected, while other unexpected issues contributed to the delays.
We know openness is important to the ME/CFS community, so we have detailed some of the key reasons for the delays below:
* Impact of the pandemic: this impacted supply chains, making it difficult to find key items like cardboard boxes for the spit kits, and made contracting times take longer.
* Avoiding launching over the busy Christmas period: this is to avoid spit kits being lost in the post and managing holidays/office closures over this period.
* People with ME/CFS are at the heart of this study, involved in every aspect of the design and development. We have adapted what we’re doing and sometimes slowed things down to be as inclusive as possible.
* Sickness and impact of loss of loved ones: we have had a number of people from our small team off at times during the project.
* Needing to work through more data protection issues than we anticipated to ensure your health information is protected to the highest level possible.
* Hiring more staff for the project, ensuring they are fully inducted while working from home.
The good news is we’re making excellent progress, like getting ethics approval, designing the survey and spit kit that are as easy to use as possible for people with ME/CFS. We are also working with the 25% ME Group to organise support for people with very severe symptoms. We’re excited about launching in the new year.
You will receive your invite by email as soon as you can take part. We will send reminders if you miss this.
You may see some people posting about their spit kit online who are part of the first phase before the full launch. If you are not part of this randomly selected small group, you will receive your invite as soon as full recruitment launches.
However, we remain confident of completing the study on time thanks to the fantastic level of support from the community. We’re excited about launching in the new year.
The good news is we’re making excellent progress, like getting ethics approval and designing the survey and spit kit that are as easy to use as possible for people with ME/CFS. We are also working with the 25% Group to organise support for people with very severe symptoms.
First, we need to find 20,000 people to take part. If you would like to be one of them, please sign up and you can be first in line when we start recruiting in the autumn.