DecodeME - UK ME/CFS DNA study underway

It also makes sense if we get people wanting to cross-reference their own research to bits of findings from it if they 'had the choice' to use the same tool with the same format (and wording) for filtering/grouping or whatever it might offer ie research is 'on the same page/scale/cohort' going forward?

 

To follow up on this, the answer is yes. It is likely, but not yet decided, that it will be available under one of the Creative Commons licence.

The DecodeME questionnaire is designed to capture those pwME who meet the Canadian Consensus and the Institute of Medicine criteria, not to apply a criteria that we have created ourselves so use of the DecodeME questionnaire won't be needed for potential cross-referencing with results from other studies that use the same selection criteria.

 

Why DecodeME Matters To People With ME/CFS

"ME/CFS advocacy is a non-stop effort. Many advocates and online campaigners work tirelessly year-round to raise awareness of this significantly debilitating medical condition, and some have done so for decades. However, the annual ME Awareness Week in May is a time when the whole ME community and ME charities band together to advocate for change and make our voices heard.

We know that DecodeME is providing long-awaited hope for many people with the condition. So, in the run up to this year’s ME Awareness campaigns, we asked our DecodeME social media ambassadors to share why DecodeME matters, and what the study means to them… within the 280 character count of a single Tweet. Here’s what they had to say:"

https://www.decodeme.org.uk/why-decodeme-matters/

Social media posts

 

And an email update.

DecodeME updates and blog posts
...
New DecodeME questionnaire
...
ME Awareness Week
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Genetics and new treatments
....
Study timescales

"We want you to know that although we are still waiting to fully open recruitment for the study, we are still on track to completing the study within its original timeframe. We will publish some preliminary results in 2023 and the final results at the end of 2024.

The next stage of the project is to continue our phase 1 launch, which will be testing our process with online test participants using the new DecodeME questionnaire. We hope to soon update you when this starts."

Read online here

 

Excellent presentation by Chris & Shona Kerr - OK I'm a bit disappointed by the timescale 2.5 years before final data will be out - maybe the preliminary data (2023 - year ish?) will turn up some leads.

https://www.decodeme.org.uk/webinar-recording-and-transcript-the-science-behind-decodeme/

 

Email update:

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

An audio recording of the following message is available HERE if you would prefer to listen.

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 .

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 to take part and live in the UK, we will send you your invitation via email once the study opens for full recruitment. 

For more information please visit our website: www.decodeme.org.uk


Best wishes,
The DecodeME team

 

DecodeME – A ‘Treasure Map’

“What is ME?” and “How can it be treated effectively?” Everyone in DecodeME desperately wants answers to these questions. At DecodeME we have always thought that this study alone may not provide all the definitive answers we need. Instead, we see our project as mapping out what future research directions should be taken and what treatments could be considered. We think of it as drawing a treasure map for other researchers, marking out places to dig and pitfalls to avoid.

https://www.decodeme.org.uk/decodeme-a-treasure-map/

https://www.facebook.com/decodeMEst...xo8AREofSbZFBjK1CS3y62ZXVWMsyqKUJwR5xt1ViayPl

 

One of the online test participants

 

Text of the latest email sent out.


You’re invited to the next DecodeME webinar.

This webinar will be a chance to hear updates about the study and more about the DecodeME questionnaire. You can also have your questions answered.

It’s on Wednesday 3rd August, 3 - 4pm 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

The focus of Wednesday's webinar will be the DecodeME questionnaire.

Join Chris Ponting, Sonya Chowdhury and Sian Leary from the DecodeME team to find out when you can take part and what that will look like. You will also hear about the work that has been done to create the new DecodeME questionnaire after receiving feedback from our testing phase participants.

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.

To watch the recording of our last webinar on the Science Behind DecodeME click HERE.

 

"We're excited to announce that #DecodeME is ready to fully launch in SEPTEMBER! If you’ve signed up for emails, we’ll email you when we open recruitment. Register for updates here decodeme.org.uk/#get-involved-…"

 

Amazing Andy!
Huge congratulations to you and the whole team!

 

Fantastic news!

 

Can someone remind me please how long it is anticipated the study will take, and its initial findings published?

 

Well, that will depend on how long it takes us to recruit enough participants who match the selection criteria and for them to return their saliva sample to us so, as frustrating as it might be to hear, I can't give a realistic timeline.

If it helps, the data analysis will take a relatively short amount of time once we have it.

 

I think Sonia Chowdhury today said results would be in line with original schedule i.e. August 2024. Is this over optimistic @Andy. I don't think I misheard but it's possible because all our power went down for a few minutes.

 

I wasn't able to attend the webinar but I've just listened back to part of it where this is addressed, and Chris talks about "the first DNA results probably coming out in the first quarter of next year", in relation to feeding the results into the current government working groups that were started by Savid Javid, and he also suggests that if we have a good recruitment response then an initial analysis might be passed on in the same way. I've not checked the whole webinar so I may have missed another answer.

Is it over optimistic? Not if we get a good response, both in terms of people looking to take part and also in spreading the word about the study....

 

How many kits have been sent out so far? And what is the inclusion criteria for Decode?