DecodeME - UK ME/CFS DNA study underway

"The DecodeME DNA study is the largest genetic study of ME/CFS in the world. Prof Chris Ponting talks about the science behind the study. Volunteers talk about their roles in helping to design the study to make it accessible to people with ME and to highlight the patient voice."

Code:

https://youtu.be/WlKvx2ensc0

https://www.youtube.com/watch?v=WlKvx2ensc0

 

It's a relatively minor thing but there is now a dark mode available on www.decodeme.org.uk

Once on the website, you should find a Light/Dark 'toggle' bottom right corner to set as you prefer.

 

A minor thing that makes a big difference and allows a whole lot of people to become involved who otherwise couldn't.

This is what patient inclusion looks like and will hopefully set a good example for future projects.

Well done.

 

Good idea. There are browser extensions that do the same also. I use one called Dark Reader and it works really well, but a good thing to do on the site directly.

 

Andy is doing a great job promoting this, and I hope also showing to researchers that collaboration with patients is possible. A model for future work in the UK and elsewhere too I hope.

 

Thank you for the kind words, it's not just me working with the researchers though, a list of some of those involved on the PPI side of things can be seen here, https://www.decodeme.org.uk/about-us/, and of those Claire and Sian are part of every decision that the Cohort Delivery Team make.

 

And talking of promotion and PPI

 

Brief video introducing the study

Code:

https://youtu.be/y_eWYKv_4GU

https://www.youtube.com/watch?v=y_eWYKv_4GU

 

Blog: People with ME/CFS need big change. Research & collaboration can fuel this.

https://www.decodeme.org.uk/people-with-me-cfs-need-big-change-research-collaboration-can-fuel-this/

 

Latest DecodeME email has gone out to those on our contact list.

As well as links to our new short video and the new blog from Sonya, both linked above, it features

"Can you become a social media ambassador?

With your help, we can reach even more people with ME/CFS online. Being an ambassador can be as simple as sharing our posts, or we'll support you to create your own.

Sign-up link, https://www.surveymonkey.co.uk/r/PK66X7B"

and

"Are you involved in a ME/CFS support group?

Could your local or regional support group help us find the 20,000 participants we need? We'll provide webinars, blogs and online talks to help you recruit others in your group to the study.

https://www.surveymonkey.co.uk/r/PD8CP9M"

 

Not sure if I'm the target group and maybe don't feel up to be an ambassador but filled in the following:

A bit odd, I'm afraid: I mainly use e-mail to ask people to spread content both via e-mail and social media -- mostly facebook, but also Twitter.

 

The study got a mention in this Nature article on Long Covid:

Some researchers are already planning to collaborate. For instance, a major study called DecodeME aims to recruit 20,000 people to find genetic factors that contribute to ME/CFS — and Evans says PHOSP-COVID will be sharing data with it.​

Is this hopeful speculation or did LC researchers reach out to collaborate? The sharing sounds like great news.

 

I don't know who reached out to who in this case but I do know Chris P has been looking out for potential opportunities for collaboration and/or exchange of information or ideas.

 

https://twitter.com/user/status/1402930790263046144

 

https://twitter.com/user/status/1404460740287807490


From the link in Chris' tweet.

"We are looking for an efficient and personable Administrator who will help co-ordinate and administer the launch of new recruitment of 20,000 research participants who have been diagnosed with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The Opportunity:

Your tasks would be to respond to questions from potential participants of the project, liaise with project members, help the team preparing paper questionnaires, enter data and check databases and support the communications activities. You would report and provide administrative support to the Project Manager. Help to make the DecodeME project (www.decodeme.org.uk) a success."
https://elxw.fa.em3.oraclecloud.com/hcmUI/CandidateExperience/en/sites/CX_1001/job/1308

 

Look forward to listening to this!

 

Now I'm nervous...

 

https://twitter.com/user/status/1404381851611893766

 

I don't understand what we should do if we want to watch/hear that.

 

Why me? Searching for genetic susceptibility to chronic fatigue syndrome and pain

"Hello, and welcome to Genetics Unzipped - the Genetics Society podcast with me, Dr Kat Arney. In this episode, supported by the Institute of Genetics and Cancer at the University of Edinburgh, we discover how researchers are using genetics to understand more about what’s going on in long-term debilitating conditions including ME/CFS and chronic pain, working hand in hand with patients to help to figure out who might be at risk and pointing towards new ideas for treatment."

https://geneticsunzipped.com/blog/2...tibility-to-chronic-fatigue-syndrome-and-pain

[ You can listen to the podcast at the link above, or via portals such as Spotify, iTunes and others - see all options at https://geneticsunzipped.com/how-to-listen ]

ETA: Chris and I appear in the first 16 mins.