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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. Amw66

    Amw66 Senior Member (Voting Rights)

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    My thoughts exactly . I havnt watched all the video to try and see how that could have been their impression.
     
  2. Tia

    Tia Senior Member (Voting Rights)

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    I watched the video the other day, I think everyone's doing a great job of making the process clear and understandable. I really appreciate these webinars and the work that goes into making them. I was also really pleased to see how they are listening to pwme so closely in terms of study design. Good to hear about the 5,000 LC cohort. One thing I found interesting was that there won't be any way of checking that people really have had a diagnosis of ME/CFS if they say they have. I can see why this wouldn't be possible but I hope it doesn't result in any kind of dilution of results. Other than that, I feel really positive about this study and looking forward to hearing more.

    Oh, also, @Andy , someone mentioned not being able to get to the post box to post their sample. This has probably already been thought about but I use the Royal Mail pick up service and it costs 70p so maybe this could be signposted to people in a similar situation? (I imagine there will be quite a few people with this problem). https://send.royalmail.com/collect/youritems
     
    Jan, Invisible Woman, sebaaa and 6 others like this.
  3. Andy

    Andy Committee Member

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    We're certainly aware of it and the team investigated this, to find out if it could form part of how samples are returned to us; unfortunately we are unable to offer that as part of the system for returning samples for logistical reasons. I can't remember the exact reasons why it didn't work out, hopefully @Simon M can.
     
    Invisible Woman, MEMarge, Tia and 2 others like this.
  4. Simon M

    Simon M Senior Member (Voting Rights)

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    Parcel collection: I think one of the issues was Covid and post men women having to collect a package with a biological sample. I think individuals can choose to book a parcel collection themselves, but that the postie is free to refuse to take the parcel. And for that reason, it didn’t seem appropriate to highlight the collection service. Sorry, I don’t have the energy to look into this any further right now
     
  5. Sasha

    Sasha Senior Member (Voting Rights)

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    3,657
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    DecodeME may not be able to use it as part of their returns system, but I think they should let people know about it in case people want to use it and pay for it themselves. Many people would be happy and able to do that if it meant they could take part without having to leave the house.

    Unfortunately, the added cost will mean it won't be possible for some, but I think we should all be told about it - and also what the pack will weigh (because that determines how you get your postage label).
     
    Invisible Woman and Tia like this.
  6. Sasha

    Sasha Senior Member (Voting Rights)

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    Ah - sorry, just saw that.
     
    Invisible Woman, Tia, Simon M and 2 others like this.
  7. Andy

    Andy Committee Member

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    [Email sent out today.]

    Important update: DecodeME will launch a few weeks later than planned.


    Key details are in bold.

    We know how important this study is to you and everyone in the M.E./CFS community, so we need to make sure everything is 100% right before launching for the 27,000+ people already interested in taking part.

    Data protection is one of the things we must get right. Professionals are further testing the study’s web portal and its security, which will take a little more time than expected.

    Keeping your health information safe is essential, and we know it’s really important to you too from your messages and webinar questions.

    We do not yet have an exact date for the launch. We will, of course, update you when we’re ready. You won’t miss it as we’ll email you and post on social media.

    Doing the world’s biggest genetic study of M.E./CFS takes time. We appreciate your patience and enthusiasm for the study. We know even a few weeks' wait feels like such a long time when people with M.E./CFS have waited so long for a study like this.

    Right now, the team (including patients and their representatives) continues to work really hard. So much is happening behind the scenes – so we wanted to share a couple of things we are excited about.


    Content warning: saliva.

    EXCLUSIVE: Your first look at the 'spit kit'

    These are taken from a video we're preparing on how to use the kit.

    The team spent time carefully preparing this kit and its instructions, as it has to be as easy as possible for severely-affected people to use. We’re still fine tuning it, so it may change.

    [​IMG]

    [​IMG]


    BIG MILESTONE: We received ethics approval, with the Research Ethics Committee giving a ‘favourable opinion’ of our research. This means the team demonstrated our research will be done in a responsible and ethical way – something that’s so important for the M.E./CFS community.


    We will be in touch very soon with a more detailed update. Have questions? You can reply to this email, contact us via social media pages (links in email footer), or save them for our upcoming webinar (more details soon!)

    Here are 3 things you can do to help before the study launches:
    1) Watch our latest webinar.
    2) Read our blogs and FAQs for more information on the study.
    3) Spread the word: become a social media ambassador, or get information for your support group.

    We’ve added this update to our blog, so you can share it easily.

    Thanks so much for your patience. We can’t do this study without you.
    Sonya.

    Sonya Chowdhury.
    Chair of DecodeME's Management Group.
     
    Rosie, FMMM1, sebaaa and 12 others like this.
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks, @Andy. I'm eager to start spitting in the interests of science but this data protection stuff is vital and I know the DecodeME team have been working hard non-stop to go as fast as they can. I'm very grateful for all their efforts!
     
    Jan, FMMM1, sebaaa and 8 others like this.
  9. Andy

    Andy Committee Member

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    Thanks. I think it's fair to say that the DecodeME team really would have liked not to have to delay, especially considering what else is going on at the moment with the NICE guideline, but this needs to be done right.
     
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    the NHS don't appear to be aware of this research

    All Studies
    0 studies found for chronic fatigue syndrome

    HELP CHANGE LIVES WITH RESEARCH
    0 chronic fatigue syndrome studies in the UK are looking for people like you to take part.

    https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

    tried searching on myalgic encephalomyelitis, 0
     

    Attached Files:

    Kitty, sebaaa, Yessica and 7 others like this.
  11. Trish

    Trish Moderator Staff Member

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    42,221
    Location:
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    DecodeME Winter Webinar 2021
    Description
    This webinar will focus on how people with ME/CFS and their carers are at the heart of all aspects of this study.

    Register for the webinar and we will send you a recording link after the event to watch in your own time.

    Have a question for the panel? Email info@decodeme.org.uk

    We know you’re all keen to know when recruitment will start. We will have an update for you in the next week or two.
    Time
    Nov 11, 2021 04:00 PM

    https://us02web.zoom.us/webinar/reg...r Webinar - opted in list UK&utm_medium=email
     
  12. Andy

    Andy Committee Member

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    17,516
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    MSEsperanza, janice, Ravn and 12 others like this.
  13. Sasha

    Sasha Senior Member (Voting Rights)

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    Just bumping this, which is on at 4pm this afternoon.
     
    Yessica, sebaaa, janice and 3 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    MSEsperanza, Skycloud, Alis and 6 others like this.
  15. Andy

    Andy Committee Member

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    Email update sent out to all who have signed up so far.

    Update: DecodeME launches in January 2022.

    Thanks for registering your interest in taking part in the DecodeME study into genetic causes of ME/CFS. We have an important update on the start date.

    Quick summary: Recruitment will launch in early 2022 in two phases, starting in January. We will email your invite when you can take part and send reminders, so you don’t miss it.

    Join our next webinar live on Facebook at 4pm today or register for the recording.

    More detail if you have the energy:

    We’re pleased to announce recruitment will start in January, and this will happen in two phases.

    First, a test phase with randomly-chosen participants allowing us to check everything is working well and get feedback. We will then open full recruitment to everyone soon after.

    This is a few months later than we hoped. We know this wait feels like a long time when people with ME/CFS have waited so long for a study like this to happen. Thank you so much for bearing with us.

    We are committed to ensuring this study delivers to the highest standard possible, with maximum impact for people with ME/CFS. This means that some tasks have taken longer than expected, while other unexpected issues contributed to the delays.


    We know openness is important to the ME/CFS community, so we have detailed some of the key reasons for the delays below:

    • Impact of the pandemic: this impacted supply chains, making it difficult to find key items like cardboard boxes for the spit kits, and made contracting times take longer.
    • Avoiding launching over the busy Christmas period: this is to avoid spit kits being lost in the post and managing holidays/office closures over this period.
    • People with ME/CFS are at the heart of this study, involved in every aspect of the design and development. We have adapted what we’re doing and sometimes slowed things down to be as inclusive as possible.
    • Sickness and impact of loss of loved ones: we have had a number of people from our small team off at times during the project.
    • Needing to work through more data protection issues than we anticipated to ensure your health information is protected to the highest level possible.
    • Hiring more staff for the project, ensuring they are fully inducted while working from home.

    However, we remain confident of completing the study on time thanks to the fantastic level of support from the community. We’re excited about launching in the new year.

    The good news is we’re making excellent progress, like getting ethics approval and designing the survey and spit kit that are as easy to use as possible for people with ME/CFS. We are also working with the 25% Group to organise support for people with very severe symptoms.

    You will receive your invite by email as soon as you can take part. We will send reminders if you miss this.

    You may see some people posting about their spit kit online who are part of the first phase before the full launch. If you are not part of this randomly selected small group, you will receive your invite as soon as the full recruitment launches.
     
  16. Trish

    Trish Moderator Staff Member

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    Thanks Andy, and thanks to all the DecodeME team. I really appreciate the clarity of communications from the DecodeME team.
     
    MEMarge, MSEsperanza, ahimsa and 17 others like this.
  17. Andy

    Andy Committee Member

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    UPDATE: DecodeME will launch in January 2022.
    UK recruitment will launch in early 2022 in two phases, starting in January.
    We're really excited to launch in the new year. We will be in touch as soon as you can take part.
    Read the full update: https://www.decodeme.org.uk/update-decodeme-to-launch-in-january-2022/

    Code:
    https://twitter.com/DecodeMEstudy/status/1458800316032462849
    Code:
    https://www.facebook.com/decodeMEstudy/posts/296586312469469
     
    MEMarge, tmrw, MSEsperanza and 13 others like this.
  18. Ariel

    Ariel Senior Member (Voting Rights)

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    Same. I really appreciate the updates and information presented; very clear, unusually so. Thank-you.
     
    MEMarge, MSEsperanza, ahimsa and 10 others like this.
  19. Wits_End

    Wits_End Senior Member (Voting Rights)

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    Did I ever ask whether they were interested in getting "donations" from family members who *don't* have ME, as a comparison?
     
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  20. Ravn

    Ravn Senior Member (Voting Rights)

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    Excellent. That applies to all four participants: Andy, Sonya, Chris and whoever the presenter was (sorry, didn't catch his name). Well worth listening to and good for sharing with people not already deeply steeped in ME advocacy or research. :thumbup:
     
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