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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. Andy

    Andy Committee Member

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    I can't remember if you did but we aren't I'm afraid.

    Oh good. Thanks for the feedback :)
     
  2. janice

    janice Senior Member (Voting Rights)

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    yes I too thought it was really clear and brilliant. To the extent that I’m thinking I might ask my daughters and sisters to listen so I might feel better understood.
    I’ve had ME following glandular fever in Jan 1999.:thumbup::hug:
     
  3. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

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    I also listened last night, well done to all, and would recommend it too, as Ravn has said above.
     
  4. Trish

    Trish Moderator Staff Member

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    I have just listened to this podcast. Thank you @Andy, Sonya and Chris. A truly excellent overview of all aspects of the situation for pwME - the need for patients to be listened to and believed, the urgent need for more and better research, the severity of ME, and the lack of belief, support and research for the last 40 years.
    Andy you spoke eloquently for us all.
     
  5. ahimsa

    ahimsa Senior Member (Voting Rights)

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  6. Andy

    Andy Committee Member

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    Ash, Invisible Woman, ahimsa and 5 others like this.
  7. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I just started listening to the webinar. I’m at the point where the discussion is about how to make sure only people with ME take part (ie not misdiagnosed people). Chris Ponting mentioned exclusion criteria. Could someone involved, expand on exactly what the criteria is to take part & what the exclusion criteria is? Thank you. I would really like to take part and have been really looking forward to it for a long time! but it suddenly occurred to me that I’m not sure if I should / would be allowed to.
     
  8. Andy

    Andy Committee Member

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    We will ask you for confirmation that you have had a diagnosis of ME, CFS, ME/CFS or CFS/ME from a clinician. After confirming that, you will then need to complete a questionnaire which will assess you against the Canadian Consensus and NAM (was IOM) criteria. We hope that the vast majority of patients will be able to complete the questionnaire online but there is the option of a paper questionnaire should that be easier for you. So long as you match one of those criteria then you will be sent a spit kit.

    Exclusion criteria is not having an official diagnosis, not having PEM and not matching either of the criteria. Hope that helps.
     
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  9. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    What if you used to meet the criteria but you don't anymore? (I met the criteria for several years but, whilst I am still very disabled by ME-like symptoms, no longer meet them.) (And I have a clinician diagnosis.)
     
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  10. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    I have a question. Will the DNA looked at in this study include mitochondrial DNA?
     
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  11. Andy

    Andy Committee Member

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    Then unfortunately you wouldn't be able to take part as you wouldn't meet our inclusion criteria.

    Good question. I don't think so but I would need to check to be certain.
     
  12. Andy

    Andy Committee Member

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    The answer from the team is "The GWAS will look at common mitochondrial DNA variants as part of the analysis but this isn't the same as a complete analysis of mitochondrial DNA.".
     
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  13. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    I don't really understand what that means haha, but good to know they'll be looking at it!
     
  14. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I tried to do some reading to understand it, maybe this helps others too?

    Common genetic variants are those that are found more commonly in the general population, but which don’t usually (by themselves) cause disease.

    from https://medlineplus.gov/genetics/understanding/mutationsanddisorders/genemutation/: “Most variants do not lead to development of disease, and those that do are uncommon in the general population. Some variants occur often enough in the population to be considered common genetic variation. Several such variants are responsible for differences between people such as eye color, hair color, and blood type. Although many of these common variations in the DNA have no negative effects on a person’s health, some may influence the risk of developing certain disorders.”

    So if a GWAS only looks at common variants, it won’t be looking at rare variants (ie those that are found less commonly in the general population, at a “minor allele frequency” of less than 1%). I think most rare diseases which are directly attributed to a certain gene eg mitochondrial diseases that are currently known about, are caused by rare variants. So the GWAS wouldn’t be looking at the sort of variants that cause genetic mitochondrial diseases. It’s not like testing the whole genome (WGS).

    However, common genetic variants can lead to increased risk of disease, and so if we find that common genetic variants pop up in the GWAS, it can help give clues as to what is contributing to the illness.

    (Does this mean though, that it could potentially miss some clues to be found in rare variants?)

    (If I’m wrong, please correct me!)
     
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  15. Milo

    Milo Senior Member (Voting Rights)

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    From my understanding, GWAS is done from the DNA; extracted presumably from every cells, may it be blood, epithelial cell (skin) and mucosa. Mitochondrial DNA requires an extra step of getting into the mitochondria and extracting the DNA from there. I believe that you need to extract it from mito rich tissues, such as muscles, via muscle biopsy.

    I may be all wrong and confused, but i had that done and i needed a muscle biopsy.
     
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  16. Andy

    Andy Committee Member

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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Podcast Review: The Challenges Facing ME/CFS Patients and the Future of Personalised Treatments
    29 November 2021
    By Ara Schorscher-Petcu

    Appeared in BioNews 1123

    https://www.bionews.org.uk/page_160574
     
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  18. Andy

    Andy Committee Member

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  19. Andy

    Andy Committee Member

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    Last edited: Dec 20, 2021
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  20. Kirsten

    Kirsten Established Member (Voting Rights)

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    Hi, i'm not sure if this has been covered already, but i couldn't find anything in the FAQs, so thought i'd ask here in case anyone knows. If something serious, other than ME is found on someone's sample, will they be notified of this so they can get the relevant medical treatment / preventative care, or not because there's too many subjects?

    I'm not sure i'd want to know or not, on the one hand it would be good to know, but on the other hand i'm not sure i could cope with knowing anything else is wrong with my body... it's something that's always stopped me being too curious about the home genetics testing. But either way it would be good to know in advance of submitting a sample.

    Thanks in advance to anyone who can answer and also to all those working hard to make this study happen!
     
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