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Any twins with ME? Research Opportunity

Discussion in 'Latest ME/CFS Research' started by Old Bones, Jan 9, 2017.

  1. Old Bones

    Old Bones Senior Member

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    From Margaret Parlor, National ME/FM Action Network:

    Note: You do not need to be a Canadian to participate in this research.


    "A senior Canadian researcher has been looking for genetic factors in people with ME/CFS for several years. His studies have already yielded promising results. The next stage of his study involves looking at identical twins where both twins have ME/CFS (“concordant”) or one of the twins has ME/CFS and the other does not (“discordant”). He has already found three sets of identical twins for his study but hopes to find more.

    If you are identical twins with discordant or concordant ME/CFS, please contact me at mefminfo@mefmaction.com to learn more about the study and what it would involve from you.

    I am interested in hearing from identical twins affected by ME/CFS anywhere in the world. There are two reasons.

    · Firstly, while this researcher hopes to find enough cases in countries where he has collaborators (Canada, the US and New Zealand), he might need additional cases and might be able to work out suitable arrangements for twins in other locations to participate as well.

    · Secondly, I suspect that other researchers will want to do twin studies. This will give us an indication of how easy or difficult it is to find volunteers and a list of possible volunteers. Please note that if a researcher asks me for names of twins, I will notify you about the study and ask you for permission to share your names; I will not give your names to researchers without notifying you and receiving your permission.

    **

    Please share this request widely. And if you know identical twins in this situation, please encourage them to contact me. Thank you!

    Margaret

    Margaret Parlor

    President, National ME/FM Action Network

    mefminfo@mefmaction.com "
     
    RYO, Snow Leopard, nandixon and 5 others like this.
  2. Cheesus

    Cheesus Senior Member

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    I have a friend with ME who is an identical twin. Her twin does not have ME. I will forward this onto her.
     
    Izola, junkcrap50 and Joh like this.
  3. Cheesus

    Cheesus Senior Member

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    You may want to change the format of that email address to something like

    mefminfo at mefmaction dot com

    Otherwise it will be swamped by internet spam.
     
  4. *GG*

    *GG* Senior Member

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    Concord, NH
    Is there a link so I can post this on Facebook?

    GG
     
  5. Old Bones

    Old Bones Senior Member

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  6. Valentijn

    Valentijn Senior Member

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    Does the mysterious senior researcher have a name? I wouldn't advertise or get involved with any ME research unless I could take a look at their past work.
     
  7. shannah

    shannah Senior Member

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    Good point @Valentijn

    Who is the researcher? Why so secretive?
     
  8. Cheesus

    Cheesus Senior Member

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    The researcher in question is Dr Alain Moreau.
     
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  9. Cheesus

    Cheesus Senior Member

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    And here is a lay description of the research:

     
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  10. gdbennett

    gdbennett

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    If they decide to study siblings that have ME, my sister and I both have it.
     
  11. Dechi

    Dechi Senior Member

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    Dr Moreau is new to ME. He started doing research just recently. He is not a specialist. But we are still appreciative of the fact that he is trying to help us. He is in Montreal, Quebec.
     
    Old Bones likes this.
  12. shannah

    shannah Senior Member

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    Haven't similar twin studies already been done?
     
  13. RYO

    RYO Senior Member

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    @Rose49
    I am curious whether Dr Davis has explored investigating genetic profile of ME/CFS patients. I would guess ME/CFS phenotype may be affected by multiple genes. Many of us have undergone WES. Are any researchers maintaining genetic database of patients suffering from ME/CFS?
     
  14. Silence

    Silence

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    I am an Identical twin, and both my twin and I have CFS/ME, but also ehlers danlos syndrome. I wonder how many twins are on this forum? Any other twins out there?
     

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