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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. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Agree that it’s sensible to promote through the CFS clinics (provided care is taken to ensure that the sample is not heavily distorted to over represent people who attend CFS clinics who may not necessarily be representative of the wider ME/CFS population). However, I can’t think of an outcome of DecodeME which would prove BPS ideology right.
     
    Last edited: Jun 23, 2021
    alktipping, sebaaa, Michelle and 4 others like this.
  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    This was one of the arguments put forward to get patients to support PACE. It would "prove" once and for all.... :rolleyes:

    If they're genuinely interested in learning more about the condition and patients welfare then they shouldn't have a problem supporting this research.

    As for patients diagnosis....well, that's a bit of a mess generally, really. Even outside the clinics.
     
    sebaaa, alktipping, Michelle and 2 others like this.
  3. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    sebaaa, alktipping, Michelle and 2 others like this.
  4. CRG

    CRG Senior Member (Voting Rights)

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    It may be at the top end of reasoned estimates but 250k for a 67 million population does not rely on the extreme rates proposed pscy focussed studies e.g https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-3-19 One of the oddities of ME/CFS research is that wholly arbitrary age limits have been applied to patient population estimates, giving the appearance that somehow ME/CFS ameliorates and ultimately disappears with age. If true that would be remarkable and should be a focus of research - of course it is highly improbably that ME/CFS ameliorates with age and the most likely case is that older ME/CFS patients have simply been excluded from epidemiology of ME/CFS. There is some consideration of these issues here: https://anumbersproblem.home.blog/2020/01/22/age-of-the-me-cfs-patient-population/
     
    Last edited: Jun 25, 2021
  5. Kirsten

    Kirsten Established Member (Voting Rights)

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    Sorry if this has already been suggested, i'm super foggy at the moment. But even just asking GP's to tell their ME/CFS patients about it. I know there are some horrific medical profesionals out there, but there are also some good ones who just want to do something for their patients but don't know what else to do. This could give them a sense of actually helping their patients and having something positive to contribute.

    And i know the study is UK wide, but every city has a sense of pride in what it does/is/has... So why not use that especiallialy in Edinburgh playing on the fact that this is in our city, we have this world class study right on our doorstep, and we can be a part of it.
     
  6. Andy

    Andy Committee Member

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    Ariel, MSEsperanza, MEMarge and 6 others like this.
  7. Andy

    Andy Committee Member

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    "We are excited to announce we will be holding a live Q+A webinar on Zoom this Friday!

    We want to ensure you have as much information about the study and what we are trying to achieve. We are therefore delighted to invite you to our next community webinar this Friday 6 August at 3:00pm. We know that some people do not use Facebook so we will be running this webinar direct through Zoom.

    It is okay if you cannot attend, we will be uploading a recording and transcript to our website so you can review at your own pace.

    In this webinar we will provide an update on the work that has been done behind the scenes to ensure DecodeME is a success when we launch. There will also be a Q+A so make sure you send over any questions by replying to this e-mail or by sending them to info@decodeme.org.uk. "

    Register at https://us02web.zoom.us/webinar/register/WN_IoVr0u58TAqqnZ_pPv5NPA
     
    MSEsperanza, MEMarge, janice and 9 others like this.
  8. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    This latest email went to my junk folder - just for information!
     
    MEMarge and Simon M like this.
  9. Andy

    Andy Committee Member

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    Thanks, I can only recommend adding info@decodeme.org.uk to your address book, contact list and/or safe senders list, whichever might be appropriate for your computer system.
     
    MEMarge, Milo, Dolphin and 1 other person like this.
  10. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Thanks. I always check junk mail. I was just giving a general heads up with other recipients in mind. I'm not sure if there's anything you can do at the 'sender' end?
     
    Ariel, alktipping, Andy and 1 other person like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Good point about GPs @Kirsten i have an appointment actually in the surgery for my hypertension etc (not ME of course!!) annual review in a couple of weeks. I’m going to ask them if they are aware of DecodeME and if they will share it on their Facebook page ideally make all staff aware so if they have any dealings with patients they could mention the study to them.
     
    Joh, alktipping, Ariel and 6 others like this.
  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Good wishes for for everyone who will present, talk and otherwise participate on the webinar.

    Sorry to be not able to attend today but looking forward to the transcript.
     
    MeSci, Trish, Nellie and 3 others like this.
  13. Andy

    Andy Committee Member

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  14. Sasha

    Sasha Senior Member (Voting Rights)

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    @Andy - I wasn't able to attend - will the video be going up on YouTube or somewhere, for those who missed the live webinar?
     
  15. Andy

    Andy Committee Member

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    Watch back now via Facebook
    Code:
    https://www.facebook.com/decodeMEstudy/videos/1564926597180166/


    or the video will be uploaded to the DecodeME Youtube channel, https://www.youtube.com/channel/UCcZO9TwFK7dSJUruzYqJj9A
     
  16. Andy

    Andy Committee Member

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    sebaaa, EzzieD, AliceLily and 6 others like this.
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    A very disgruntled person in one of the facebook groups is annoyed that their question was not asked and has picked up that this research is focused on drug development not root causes. It is switching a lot of people off .

    Perhaps some clarification on social media would not go amiss.
     
    Invisible Woman likes this.
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    What’s wrong with drug development? How do people think effective treatments are going to come about? Management strategies? Eating healthy?
     
  19. Andy

    Andy Committee Member

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    I can pass this on but do you feel that they have a point? When it says on the front page of the website, "Our study aims to find root causes of why people become ill with ME/CFS", and repeats the point elsewhere, I would imagine that the DecodeME team are likely to feel that the messaging has been clear on this point already, but if that isn't the case then we can try to improve it.
     
  20. Simon M

    Simon M Senior Member (Voting Rights)

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    I can't understand where they got that idea from.

    The whole aim of DecodeME is to find root causes as the critical first step to getting drug treatments (v hard to develop a drug if you don't know the biological problem).

    From the website:
    "The study should help us understand the disease and ultimately find treatments."
     
    Last edited: Aug 10, 2021
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