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DecodeME - UK ME/CFS DNA study underway

Discussion in 'ME/CFS research news' started by NelliePledge, Jun 23, 2020.

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  1. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Just checked the facebook link to the webinar:

    "Technical issues have defeated our efforts to live stream this evening. We're recording content as we speak that we'll share across our online platform as soon as we're able.

    "We're very sorry to all those who put aside time to attend the webinar this evening and to those who put precious energy towards viewing the webinar."
     
    MSEsperanza, Apr 15, 2021
    #521
    Barry, sebaaa, MEMarge and 7 others like this.
  2. Andy

    Andy Committee Member

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    Yeah, Zoom and Facebook didn't want to play ball. Here is the recording that we did,
    Code:
    https://youtu.be/ASDXDhgYHyY

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


     
    Andy, Apr 15, 2021
    #522
    Barry, sebaaa, cfsandmore and 11 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Some notes taken while watching the webinar:

    Prof Chris Ponting: 5 steps for a successful co-production:

    1. Questionnaire from home - online (or on paper if difficult to do online) - criteria, professional diagnosis, age over 16, all severity levels
    Launch Sept. 2021, hope to reach at least 20,000 people who pass the criteria

    2. Saliva collection from home - by post. Samples go to the Biocentre in Milton Keynes where DNA will be extracted.

    3. DNA - The DNA will go to a company ThermoFisher in California who read the DNA at almost a million positions across the genome. Half of the DNA will be kept at Milton Keynes, so when future funding allows, whole genome sequencing can be done.

    4. Data - sent to DecodeME researchers in Edinburgh

    5 DNA data analysis - The team in Edinburgh will do the data analysis comparing the data from the 20,000 pwME and 500,000 controls already recorded in the UK biobank. They will look for variations in genes that are more common in ME than in controls.

    Hoped for outcomes
    1. Biomedical evidence, catalysing evidence-based experiments
    2. Overlap (or not) with the genetics of other diseases
    3. Societal changes in perception of ME/CFS

    What they are doing now. Working on the questionniares in collaboration with partners at Solve ME, and all the other processes involved in the study, and going through the ethics procedures. Also putting in place procurement and contracts with partners, and tracking systems for all the materials.

    Sadie Whittaker from Solve ME:
    Explained the You + ME registry and how that infrastructure will be used in the DecodeME study.

    The registry which opened last year has a symptom, life events/activities and treatment tracker, and they collect biological samples. The individual can graph changes over time for self monitoring. The data is also available for researchers. Currently US only, but planning to go worldwide in June. Also now open to people with Long Covid, and they have some controls. Total so far over 3,000 participants.

    They are working with DecodeME to use some of their infrastructure, with data housed at University of Edinburgh with Chris Ponting's research group. Participants will also be invited to sign up with the Solve ME You + ME registry, and vice versa - people in the UK signed up for the Solve registry will be given an easy option to sign up for DecodeME.

    They are exploring how to enable those who give permission for individuals' data to be transferred across between the two to save entering the same information twice, and to benefit other research projects.

    Andy Devereux-Cooke described how people with lived experience of ME and their carers are involved in the project and are able to influence it. He looked at PPI - patient and public involvement - in research as a relatively new development historically. In DecodeME the PPI steering group meets once a month to review and express views on progress of the project, and patients or carers are also embedded into the delivery groups including cohort delivery, and making the communications with participants ME friendly, giving insights from lived experience. This necessitates taking care of the health of the PPI participants, meaning some delays in the process.

    27 minutes: Chris Ponting describes the added value of working alongside pwME, seeing impact of the disease on people's lives, adding to motivation to make a difference, and better understanding of how to communicate about the project with pwME.

    Sonya Chowdhury talked about the importance of continuing to encourage people to sign up to express interest in taking part (UK only), and to receive updates (worldwide).

    Questions - they had 457 questions in advance!

    Since there were so many questions, and this had to be a recorded session rather than a live webinar, they plan to do another webinar next week.
     
    Last edited: Apr 16, 2021
    Trish, Apr 16, 2021
    #523
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  4. Andy

    Andy Committee Member

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    DecodeME April webinar transcript

    "We are sorry again for all those who could not join our April webinar because of the technical issues we were experiencing. We recorded the webinar in which DecodeME’s Chris Ponting, Andy Devereux-Cooke, and Sonya Chowdhury were joined by SolveME’s Sadie Whittaker to talk about participating in the study and a full transcript of the webinar has been made available."

    https://www.decodeme.org.uk/decodeme-april-webinar-transcript/

     
    Andy, Apr 22, 2021
    #524
    Barry, Amw66, Starlight and 13 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Thanks to you and the team @Andy, obviously tech issues happen :banghead: i appreciate the thought gone in to making the information as accessible as possible.
     
    NelliePledge, Apr 22, 2021
    #525
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  6. Andy

    Andy Committee Member

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    Thanks NP. We are lucky to have a fantastic team working away very hard on this to make the study as accessible and successful as possible.
     
    Andy, Apr 22, 2021
    #526
    Amw66, Starlight, sebaaa and 9 others like this.
  7. Andy

    Andy Committee Member

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    Andy, May 3, 2021
    #527
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  8. Sasha

    Sasha Senior Member (Voting Rights)

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    @Trish, Thanks for those notes, very helpful!

    Quick question: is that 'age over 16' or should it be '16 and over'?
     
    Sasha, May 3, 2021
    #528
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  9. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I understand that the team have an excellent candidate starting the new Comms role next week. One with lived experience of ME.
     
    MEMarge, May 3, 2021
    #529
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  10. Andy

    Andy Committee Member

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    Andy, May 4, 2021
    #530
    Amw66, EzzieD, Michelle and 5 others like this.
  11. Simon M

    Simon M Senior Member (Voting Rights)

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    From DNA to drug development

    How studies like DecodeME lead to progress in diseases – five success stories

    How do you find treatments for a disease like ME/CFS, where nothing is known for sure about its causes?

    One way scientists can now look for answers is with very large DNA studies, like DecodeME. This fairly new approach is already giving insights and pointing to treatments for a range of illnesses, including rheumatoid arthritis, type II diabetes and even severe Covid.

    The clue lies in our DNA

    Plain DNA for success blog.png

    ...

    Summary: 5 big DNA study successes
    Big DNA studies are still relatively new and the science that drives them is developing all the time. But these five examples show the power of the approach.

      • In rheumatoid arthritis, it led to ongoing development of new drugs that aim to tackle the root of the problem.
      • It led to the discovery that several autoimmune diseases could be treated with drugs already developed for other diseases.
      • In Type II diabetes, a surprising discovery led to development work on a new drug.
      • In Alzheimer’s disease, DNA research indicated that researchers should look for answers in the brain’s “support cast” of cells.
      • And in Covid-19, the most devastating illness to strike the world in over 100 years, a DNA study has already provided powerful clues to scientists looking for life-saving drugs.
    Looking for answers across human biology
    One of the main advantages of big DNA studies is that they look across all 3 billion letters that make up the DNA book of life. This means that they are effectively scanning the whole of human biology.

    This is particularly important for a disease like ME/CFS where we know so little - you don’t even need to know what you’re looking for.
    ...
     
    Last edited: May 4, 2021
    Simon M, May 4, 2021
    #531
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  12. Trish

    Trish Moderator Staff Member

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    A good article written in accessible language for non-scientists.
     
    Trish, May 4, 2021
    #532
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  13. Andy

    Andy Committee Member

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    Andy, May 6, 2021
    #533
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  14. Andy

    Andy Committee Member

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    Andy, May 6, 2021
    #534
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  15. Andy

    Andy Committee Member

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    Andy, May 11, 2021
    #535
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  16. Andy

    Andy Committee Member

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    Andy, May 11, 2021
    #536
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  17. Sasha

    Sasha Senior Member (Voting Rights)

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    When is ME Awareness Day, @Andy? Does this push deserve its own thread and a place on the banner?
     
    Sasha, May 11, 2021
    #537
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  18. Andy

    Andy Committee Member

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    Andy, May 11, 2021
    #538
    Amw66, Trish, MEMarge and 2 others like this.
  19. Andy

    Andy Committee Member

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    Tomorrow. Honestly, I'm not sure a new thread and banner here would make enough of a difference to make it a priority, particularly within the limited time.
     
    Andy, May 11, 2021
    #539
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  20. Andy

    Andy Committee Member

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    Andy, May 12, 2021
    #540
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