Forum home› The potting shed
This Forum will close on Wednesday 27 March, 2024. Please refer to the announcement on the Discussions page for further detail.

DeCode ME/CFS

FireFire Posts: 19,096
edited October 2022 in The potting shed
The world's biggest study on ME/CFS has just begun, with major funding from many quarters. If you know of any UK residents over 16 that have diagnosed ME, have had it in the past, or have had an officially diagnosed form of Long Covid, participation in the study may be of interest. The project is being led by the University of Edinburgh and is specifically designed to find the role of genetics in the disease. 15 000 people have already signed up and more are needed to get data at scale.

It's the first major study designed to shine light on the devasting condition.









«1

Posts

  • ErgatesErgates Posts: 2,953
    Thanks Fire. I’ve forwarded this on to a friend who is a sufferer.
  • FireFire Posts: 19,096
    This DNA study has had a new tranche of funding and is still looking for participants. If you have a ME/CFS or Long Covid diagnosis or know someone who has please do investigate.

    It's the first big study ever done - proper funding, global interest. Long term.
  • FireFire Posts: 19,096
    edited October 2023
    The DeCode ME (UK) is closing in the next few weeks and they need more people with ME diagnosis to join in with the project so that the data set will be as robust as possible. If you know of people suffering with ME/CFS/Long Covid, please let them know that they are very invited to participate. Over 20 000 people in the Uk have got involved so far with this study (since 2020) and a final cohort is needed.






  • muckyhandsmikemuckyhandsmike Posts: 239
    my daughter has suffered with me since being a teenager. I think she has already participated but I will check, thank you fire.
  • FireFire Posts: 19,096
    I'm sorry to hear that Mike.  It can be devasting.


  • ChelonieChelonie Posts: 4
    I participated in this! I've never been so excited to drool before.   :D
  • FireFire Posts: 19,096
    edited October 2023
    Lol. 

    As a participant we get regular webinar updates from the DNA study team - comms are a big part of the set up. They take this and follow up seriously and they are good at it (participant relations, they call it). Uni of Edinburgh and leading.  The project is closing soon but hopefully many more studies will spring from it - not least how to address the issues they find in the cohort they identify. Of course, the results will throw up more questions than they answer - but that is kind of the point.
  • FireFire Posts: 19,096
    Decode ME project has closed now for new participants but is still waiting for a lot of kits to be returned. It has gathered the world's largest scientific cohort of people diagnosed with ME and Long Covid - over 20 000 UK residents. There is a recent update here on where the project has got to. Project led by University of Edinbugh.
  • JennyJJennyJ Posts: 10,576
    A friend who has ME was telling me about this yesterday - she is participating.
    Doncaster, South Yorkshire. Soil type: sandy, well-drained
  • FireFire Posts: 19,096
    edited December 2023
    The video is interesting in terms of how a DNA study can run. It drills down into quite a bit of detail after around min 17.

     It is clear that there is a genetic component to the disease. 2/3rds of patients report they had a viral infection before ME onset. 84% of people in the study are women.
Sign In or Register to comment.