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important DecodeME update #4 …

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 January 2022. From 

Great news! DecodeME opens for first participants this month.

Quick summary: Great news! DecodeME opens for first participants this month.

Recruitment will happen in two phases. Phase 1 opens on January 31 for around 550 people. Once we’re sure everything is running smoothly, we’ll open the study for everyone with ME/CFS in the UK (Phase 2).

We’re holding a webinar on Thursday 27th January at 10-11am to explain the recruitment process and answer your questions.

You can sign up to attend live on Zoom or wait for us to email you the recording and transcript later.

Have a question for the webinar? Email us at

More information if you have time and energy:

Great news! DecodeME will launch this month. We’re excited to invite the first participants on January 31.

Recruitment will happen in two phases. First, over 50 people with severe ME/CFS will be invited to take part. They will complete the questionnaire on paper or via telephone (with support from the 25% ME Group).

Then we’ll invite up to 500 of online participants, chosen randomly, to take part in the study online.

This testing of our paper, telephone and online processes means we can make any improvements based on patients’ feedback. With over 30,000 people waiting to take part, we need to make sure the process is as smooth and inclusive as possible and the right support is in place.

Once we’ve completed this process, we will let you all know we’re ready for the full launch.

You do not need to do anything for now, we’ll be in touch when it’s time for you to take part and we’ll keep you updated on the process.

Want to know more? We’re holding a webinar on Thursday 27th January at 10-11am. You can sign up to attend live on Zoom or we’ll post the recording and transcript when they’re ready to this website.

On this month’s webinar, Sonya Chowdhury and Chris Ponting will explain the recruitment process.

Claire Tripp, a carer and part of the study’s Patient and Public Involvement steering group, will explain the important role ME/CFS patients and carers play in making the study as inclusive as possible.

Patients Life of Pippa’s Pippa Stacey and Blue Sunday: the Tea Party For ME creator Anna Redshaw will appear in video messages, explaining their roles talking to the online ME/CFS community about the study and encouraging people to register. Register for the webinar.

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. 🥰