I developed sudden onset Myalgic Encephalomyelitis in Oct 1999. I was previously very fit, healthy, I lost my career, social life and ability to care for myself. My symptoms consist of extreme nausea, dizziness, bouts of shivering then sweating, noise and light intolerance, transient paralysis and a brain that no longer functions properly. I was completely bed-bound for the next 7years. A gradual improvement over the next 5 years allowed me to form a patient charity in 2011. 18 year on, I remain 80% bed/housebound with severely restricted energy levels but with the help of today's technology, I will continue to 'fight' for the truth and the answers for myself, and for all patients
Joan has done great work in Northern Ireland helping to organise regular meetings, conferences including with international speakers, media coverage, awareness-raising activities, fund-raising (for initiatives in NI and also research), etc. She has done all this despite being quite ill herself.
I’m a Patient Leader