Wednesday, January 11, 2017

Canadian Genetic ME/CFS Study Looking for Identical Twins

A Canadian ME/CFS genetic study is looking for identical twins where at least one of the twins (or both) has ME/CFS. Here are the details - please contact the study coordinator listed at the bottom of the page directly, using the e-mail link highlighted. It's always a win-win when you can participate in research and help move the science forward for all of us!

MEFM Society of BC
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 Parlor
President, National ME/FM Action Network
mefminfo@mefmaction.com
National ME/FM Action Network
512, 33 Banner Road
Nepean, ON K2H 8V7 Canada

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