DecodeME - UK ME/CFS DNA study underway

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Science behind DecodeME uncovers potential Covid-19 treatments
DecodeME's Dr Veronique Vitart, Dr Shona Kerr and Professor Chris Ponting are among a group of researchers who have just published a study in the top science journal Nature on the role that genetics plays in severe Covid-19.

Using the same technique that will power DecodeME, they found that people with particular DNA differences were more likely to end up in intensive care with Covid-19. The affected genes relate to inflammation in the lungs and fighting off viruses – and these findings point the way to possible ways to treat severe Covid-19 and save lives.
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https://www.decodeme.org.uk/science-behind-decodeme-uncovers-potential-covid-19-treatments/
 
Email update.

We are excited to announce that we will be working with Solve ME to sign up participants to the study when we launch recruitment in May.

We will be licensing the You and ME registry digital platform which can be accessed via a computer or smartphone.

You can read more about this in the 'latest updates' section of the FAQs page of our website or join us this afternoon for our live Q&A webinar, which will be streamed live on our Facebook page.

Best wishes,
The DecodeME team
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Solve M.E. has announced their involvement in the DecodeME study
We are excited to announce we’re partnering with our UK colleagues Action for ME and Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh on the world’s biggest biomedical study of the causes of ME/CFS!

The DecodeME genome-wide association study will enroll 20,000 individuals with ME/CFS living in the UK using the You + ME platform. The goal is to analyze DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments.

This partnership is a significant step towards our vision of creating the largest global dataset of individuals with ME/CFS, and we couldn’t be more thrilled to be working together.
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https://solvecfs.org/you-me-has-joined-the-worlds-biggest-study-of-me-cfs/
 
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Lots of good could come out of this. I often see people requesting about tracking apps and usually the complaints are that it's nice and everything but people don't want to track stuff just to track stuff, they want it to be used for research, or at the very least to count things, to make it meaningful.

I've never really done this journal thing. It's obvious that nobody cares about it, you can be super rigorous about it, tracking for months with annotations and at best a GP will give it 10 seconds of eyeball time, most of it rolling up.

The point isn't to be busy. The point is for relevant data to become relevant information, then turned into useful knowledge. This app is the right thing for the moment, it sure would be great if some big powerful research institutions found such things interesting. Or we can just do it ourselves I guess that's another way of doing things when the people whose job it is to solve those problems badly do not want to even try.
 
John Mac said:
Solve M.E. has announced their involvement in the DecodeME study

https://solvecfs.org/you-me-has-joined-the-worlds-biggest-study-of-me-cfs/
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From the FAQs, https://www.decodeme.org.uk/faqs/#latest-updates
Why are you working with Solve?

We want to make participating as easy as possible. Solve has a strong reputation and are experts in doing exactly what we need, which is to provide a simple and robust process for people with ME/CFS to be part of DecodeME. Solve ME has been collecting participant and diagnostic data from people in the US and Australia (and launching globally in early 2021) through a desktop portal and an app which can be easily accessed on your phone or via a computer/iPad. It has been tried and tested, and meets our needs for collecting the data we need for the DecodeME study.

We are also excited by the wider research opportunities that Solve bring to the ME/CFS community and so, by working with Solve, we can offer more for participants beyond DecodeME. Once you have completed our questionnaire, you will be able to see if you are eligible to participate in DecodeME, and will be provided with an option to be a part of the You + ME Registry where you will have the option to use a symptom tracking app. By consenting to join the Registry, your data can contribute to a large, global data set that can be used anonymously by researchers around the world.
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Administration Manager
Job Description
Grade 5: 23,067 - 26,715

College/School/Department: MRC Human Genetics Unit, Molecular, Genetic and Population Health Sciences

Full-time – 35 hours

Fixed Term until August 2024



We are seeking a skilled and dedicated Administration Manager for a major new genetics research study, “DecodeME”. The new role will help lead in administering the recruitment of 20,000 research participants to the “DecodeME” cohort.



The Opportunity:

The DecodeME research partnership is a collaboration between researchers and people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), carers and the public. The Administration Manager will be responsible for managing the process of addressing, linking by barcode scanning and sending saliva sample collection packs to 20,000 participants. The post-holder will also organise and maintain existing and future administrative data files, and prepare amendments to key project processes.


Your skills and attributes for success:

· Recognition of and solving problems using existing policies and procedures, and able to identify areas for improvement and assist in implementing changes in a responsive and timely fashion

· Experience in delivering tasks with a high level of flexibility and confidence to make decisions

· Experience in planning and executing work within a larger programme

· Able to arrange meetings, ensure smooth management of documents, draft agendas and take minutes.

· Experience in using and updating databases and spreadsheets adhering to high ethical and legal standards.


Click here for a copy of the full job description



As a valued member of our team you can expect:

An exciting, positive, creative, challenging and rewarding place to work. The DecodeME project is a major national initiative working with and on behalf of the >200,000 people in the UK who live with ME. We give you support, nurture your talent and reward success. You will benefit from a competitive reward package and a wide range of staff benefits, which includes a generous holiday entitlement, a defined benefits pension scheme, staff discounts, family friendly initiatives, flexible working and much more. Access our staff benefits page for further information and use our reward calculator to find out the total value of pay and benefits provided.
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https://elxw.fa.em3.oraclecloud.com...en/sites/CX_1001/job/168/?utm_medium=jobshare
 
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