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Closed UK: DecodeME updates, was recruitment thread.

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Sep 12, 2022.

  1. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
    EDIT: Recruitment is now closed, thank you to all who participated.

    First publication, which is analysis of questionnaire answers from 17k participants, can be found here, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

    *************************

    For those of you who registered for updates at www.decodeme.org.uk, keep an eye on your email inbox later this morning.


    As of 11am, 12th Sept, an email was sent to everybody who registered for updates, giving them early access to the full registration and questionnaire process. If you have not seen it, please check your spam folder.

    Once recruitment opens at 12pm today, to take part, you will need:
    • to have been diagnosed with ME (or ME/CFS, CFS or CFS/ME) by a health professional
    • aged 16 and over
    • and be based in UK (excluding Isle of Man and Channel Isles)
    and then will need to complete our cohort selection questionnaire.

    We are keen for as many people as possible to take part, so anybody can now go to www.decodeme.org.uk and click on the appropriately titled "Take part" button to start your participation.

    We would also appreciate people sharing the study - for resources for sharing see https://www.decodeme.org.uk/ways-to-share/

    *** Please note: not everyone will be asked to provide a saliva sample. We realise that this will be disappointing to those not asked, after all everybody will have spent precious energy and time on completing the cohort selection questionnaire and we are very grateful for that. Your answers will still be very useful in regard to establishing a profile of the population of people with ME/CFS in the UK. ***


    ETA: I think I am now done for adding additional information to this post (fingers crossed).

    ETA 2: Changed "mainland UK" to "UK (excluding Isle of Man and Channel Isles)". Unfortunately, in brief, issues with postage to both of these areas prevents us from including them.

    Our discussion thread for the pre-recruitment stage of DecodeME can be found here, DecodeME - UK ME/CFS DNA study underway
     
    Last edited: Mar 21, 2024
    Samuel, Barry, sebaaa and 30 others like this.
  2. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
    People with ME invited to take part in major genetic study

    "DecodeME aims to reveal the tiny differences in a person’s DNA that can increase their risk of developing the condition.

    People who have been diagnosed with myalgic encephalomyelitis (ME) are being invited to take part in the world’s largest genetic study of the disease.

    The study, named DecodeME and led by researchers at Edinburgh University’s MRC Human Genetics Unit, aims to reveal the tiny differences in a person’s DNA that can increase their risk of developing ME, also known as chronic fatigue syndrome (CFS).


    It is estimated that more than 250,000 people in the UK are affected by the condition, with symptoms including pain, “brain fog” and extreme exhaustion that cannot be improved with rest.
    .....
    Individuals with ME or CFS who are aged 16 and over and based in the UK are invited to take part from home by signing up on the DecodeME website from 12pm on Monday."

    https://www.independent.co.uk/news/health/people-dna-covid-b2165026.html

     
  3. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
    Hunt begins for genes to unlock mystery of ME

    "A scientific mission to find the genetic signal to one of the world’s most puzzling medical conditions begins today.

    British researchers are inviting thousands of people with myalgic encephalomyelitis (ME) to provide DNA samples for analysis to identify the minute differences that make them susceptible to the debilitating illness.

    At least 250,000 people in the UK have ME, which affects about 2½ times as many women as men. The great majority of cases develop after a viral infection, rendering about a quarter of patients housebound or bedbound. It is fatal in extreme cases and there is no known treatment or diagnostic test."

    Paywall, https://www.thetimes.co.uk/article/01503e8a-31ed-11ed-a08f-af84e8072b22

    Open access, https://www.thetimes.co.uk/article/...2?shareToken=ed22f36d0918b587a559b642eb9022a1 (might be time-limited) from
     
    Last edited: Sep 12, 2022
    Binkie4, sebaaa, MEMarge and 24 others like this.
  4. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
    People with Myalgic Encephalomyelitis to take part in world's largest genetic study

    "People who have been diagnosed with myalgic encephalomyelitis (ME) are being invited to take part in the world's largest genetic study of the disease.

    The study, named DecodeME and led by researchers at Edinburgh University’s MRC Human Genetics Unit, aims to reveal the tiny differences in a person’s DNA that can increase their risk of developing ME, also known as chronic fatigue syndrome (CFS). It is estimated that more than 250,000 people in the UK are affected by the condition, with symptoms including pain, “brain fog” and extreme exhaustion that cannot be improved with rest."

    https://www.express.co.uk/life-styl...-syndrome-me-genetic-study-health-news-latest
     
    sebaaa, MEMarge, AliceLily and 13 others like this.
  5. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
  6. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
    Binkie4, Amw66, Barry and 14 others like this.
  7. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
  8. Trish

    Trish Moderator Staff Member

    Messages:
    51,884
    Location:
    UK
    Well done to the DecodeME team for getting this off the ground and for such a positive and effective publicity round.
     
    Binkie4, Barry, MEMarge and 21 others like this.
  9. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    Especially impressive given the scale of what's dominating UK news right now!

    Well done indeed to the team.
     
    Amw66, Barry, sebaaa and 19 others like this.
  10. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
    As of 11am, 12th Sept, an email was sent to everybody who registered for updates, giving them early access to the full registration and questionnaire process. If you have not seen it, please check your spam folder.
     
  11. Trish

    Trish Moderator Staff Member

    Messages:
    51,884
    Location:
    UK
    Well at least one has arrived safely. I do love how clear and straighforward the email is. No superfluous babble, just a welcoming invitation with simple instructions. I haven't done the next bit yet.
     
  12. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,637
    Just got my email too.
     
  13. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    1,244
    Location:
    Pennsylvania
    This is excellent news! I hope your website doesn't crash from the excitement! I'm amazed it's getting so much media coverage, and I hope it lets you achieve your recruitment goals quickly.
     
    MEMarge, AliceLily, Ariel and 9 others like this.
  14. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    475
    email safely arrived here - very happy to see it!
     
    AliceLily, chicaguapa, Wonko and 7 others like this.
  15. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

    Messages:
    1,052
    Location:
    London, UK
    Done. I suspect that ticking the box for diagnosed adrenal insufficiency will rule me out, though. As it should. No-one wants confounding comorbidities, even iatrogenic ones which postdate the ME/CFS diagnosis.
     
    AliceLily, Ariel, chicaguapa and 9 others like this.
  16. EzzieD

    EzzieD Senior Member (Voting Rights)

    Messages:
    533
    Location:
    UK
    Oooh, thank you, got my email now. Looking forward to seeing how the study pans out! A big THANK YOU to all involved.
     
    AliceLily, Ariel, chicaguapa and 7 others like this.
  17. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
    A note, that I have also added in the opening post of this thread.

    Please note: not everyone will be asked to provide a saliva sample. We realise that this will be disappointing to those not asked, after all everybody will have spent precious energy and time on completing the cohort selection questionnaire and we are very grateful for that. Your answers will still be very useful in regard to establishing a profile of the population of people with ME/CFS in the UK.
     
    MEMarge, AliceLily, Ariel and 10 others like this.
  18. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Messages:
    624
    Barry, AliceLily, Ariel and 9 others like this.
  19. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,441
    Location:
    Cornwall, UK
    I don't think I've received an email from DecodeME since 02/10/20, and haven't received today's. So maybe my participation isn't needed?
     
    AliceLily, Ariel, Wonko and 2 others like this.
  20. Andy

    Andy Committee Member

    Messages:
    21,812
    Location:
    Hampshire, UK
    Unfortunately with any mass emailing, a certain number simply don't get through, and sometimes we can't know why that is the case, so I'm sorry that you've not received anything since then.

    We are keen for as many people as possible to take part, so for anybody, such as yourself, who hasn't received an email invite, you can now go to www.decodeme.org.uk and click on the appropriately titled "Take part" button to start your participation.
     
    MeSci, MEMarge, ukxmrv and 10 others like this.

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