National ME/FM Action Network announcement:
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 Margaret Parlor 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
