By CYNTHIA BULIK
Published: March 27, 2014
At the beginning of the Anorexia Nervosa Genetics Initiative (ANGI), we were initially only able to invite women and girls who had suffered from anorexia at any point in their lives to be part of this research study. We, the researchers, weren’t happy with this, nor were some members of the community. I received many comments from men who had had anorexia and from mothers of boys with anorexia who very much wanted to participate. Some were even a little humorous, like “When are you going to do MANGI?” But all were very well conceived and in line with what we as researchers hoped to do—namely include males. I found myself telling far to many people to bear with us, that we had to start somewhere, and I promised that we would get to the point of collecting samples and clinical information from men and boys too.
So we prepared our case as to why including men and boys in this research study is important and we had a strong argument. First, men and boys are underrepresented in research on anorexia nervosa and we didn’t want to contribute to that trend. Second, some data suggest that family psychiatric history is even stronger in males with anorexia, which could possibly suggest that a greater genetic loading might be necessary for expression of the disorder in males. If that were the case, then involving males might make detection of genetic variants that contribute to the disorder easier, provided the genetic influences on the disorder are the same in males and females, and there is no reason to believe that they are not. Third, males are actively asking if they can participate, meaning that just like their female counterparts, they are keen to contribute to our research to decode this illness.
Apparently our argument was convincing! I am overjoyed to announce that we are now cleared to open our invitation to participate in ANGI to men and boys who have suffered from anorexia nervosa at any time in their life!
Participation in this research study is straightforward and includes completing a questionnaire and providing a blood sample. Each country has step-by-step instructions to make your experience as streamlined as possible. I am so pleased to be able to invite all of you, males and females to help us unlock the biology of anorexia nervosa with the ultimate aim of reducing suffering and hopefully, someday, eradicating this devastating illness.
If you are in the UK, we encourage you to visit Charlotte’s Helix or call 0207 8485381 or Freephone 0800 9951999