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important DecodeME update #9 …

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,

DecodeMe …

 fragmented.ME xXx

Blog article to follow is Copyright © DecodeME (2021).
Updated June 2022. From 

DecodeME’s online testing phase

An audio recording of this blog post can be found below:

DecodeME the ME/CFS study · DecodeME’s online testing phase

We want to let you know the good news that DecodeME is beginning the online testing phase.

Quick summary:
    • Our new DecodeME questionnaire has received ethical approval.
    • We start online testing on June 15th 2022 with 500 participants selected at random from those who previously registered.
    • 200 participants will be invited in the first week, 300 the next.
    • This is the final testing phase. When we are happy that the process and our systems are working as they should, we will open full recruitment to up to 25,000 study participants.

If you have registered, we will send you your invitation once the study opens full recruitment.

More detail if you have the energy:

You may remember that Phase 1 of our study launch consists of testing our process with around 550 participants before we fully open recruitment for all 25,000 participants. We’ve already completed our own rigorous checks but want to be sure that the online system works well with real participants.

We launched Phase 1 in January 2022 and we started by testing the study’s initial questionnaire. 50 test participants were contacted and tested the paper version. These were people who registered their interest in participating but could not do so online. This was an important thing to have done because it showed us that we needed to do more work on the questions to make them clearer for all people with ME/CFS. So, we’ve rewritten it entirely, creating the new DecodeME questionnaire which should be much more accessible for people with all severities of ME/CFS. Importantly, it still assesses participants using the criteria chosen for the study.

We will be hosting a webinar in August where you can hear more about the DecodeME questionnaire and will have a chance to ask any questions.

We needed to apply for ethical approval for the new DecodeME questionnaire after making the necessary changes. We are pleased to say that we have received ethical approval from the Research Ethics Committee and the online system is now ready for the first 500 test participants to sign up.

We also created a new online system for the online questionnaire. Our technical team at the University of Edinburgh worked hard to achieve this in a short period of time. By working closely with PPI members, and listening to their feedback, the technical team created an online system that people with ME/CFS can easily access to participate in DecodeME.

As the next part of Phase 1 we are inviting 500 participants to complete the questionnaire and test the new online system. We’ve randomly selected the 500 from among those who registered on our website. 200 participants will be invited in the first week and 300 participants in the second. Each randomly-selected participant will be emailed directly using the email address with which they first registered. This email invites them to participate and contains a unique passcode to the online questionnaire.

Although this is part of our testing phase, their participation is real as we have already successfully completed our own rigorous data security checks. Rest assured: all these participants’ data and DNA will be part of the final cohort for the study. Once we are happy that the online process is working well, and we have resolved any issues that arise at this stage, DecodeME will fully launch to recruit the remainder of the 25,000 participants.

If you are registered, we will send you your invitation via email once the study opens full recruitment

In the meantime, you can find out more about DecodeME and keep updated by visiting our website and signing up for updates.

Thank you so much for your patience. We can’t wait to share the study with you soon.

… Sign Up Here …

 © decodeME

My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰