I recently found out I have it after an appointment with a consultant haematologist. He’s recommended asking my Gp for genetic testing but given I’m not planing to have any more children, I’m not sure how useful that would be. My main concern is how blasé he seemed, there’s obviously no cure/medication but I’m surprised there aren’t any further tests to rule out complications arising from it. Equally I found being told that most people are asymptomatic, yet I’ve dealt with anaemia, dizziness and extreme exhaustion and PEM for much of my adult life whilst GP’s have largely fobbed me off about these symptoms. Yet on the other hand it seems I’ve been placed on some list as immune compromised because they keep asking me in for a flu/covid jab etc. I just wondered if anyone else here has experience of it and what if anything has worked for them?