Journal of IiMER walk that far anymore. But that was not his fault. I do not qualify for a disabled parking permit because my physical condition is too good. And my family cannot do what they want to do because they have to be quiet or need to do something they do not want to. Intimacy is also a problem in ME. Sometimes I joke about this and say: “I’m getting tired just thinking about it.” What people do not know is that there is truth in what I say, which causes marriages to fail and patients to get isolated. Overall, my ME is an invisible disease, people cannot see I am sick and I am usually not showing it. Even on bad days I keep hearing: “You look fine”. As an ME patient I have learned pretty quick to shut up and say I was fine no matter how I felt. On days when I stay at home, I am completely invisible. Like severe ME patients who are bedridden and housebound. Conclusion From my story you can gather that there are little positive aspects to having ME. However being a volunteer for the Belgian ME Association and the European ME Alliance has brought meaning to my life. Something that had disappeared since my retirement in 2007. I have watched my life go by because of ME. Not being able to participate in my own life and if I did/do, I pay the price. So I am here to raise awareness and advocate for a disease called ME that hinders people, who are disabled in various degrees included long-term physical, cognitive or sensory impairments, to participate fully and effectively in society on an equal basis with others. patients. We use diagnosis to get a shared reality. It is a common language between patients, medical professionals and the healthcare system. Patients with more unexplained symptoms, patients with many symptoms do not always have this luxury of a shared reality and a common language. They may not get a diagnosis, they may get many different diagnoses or they may get misdiagnosed. So patients with many unexplained symptoms, ME patients, they are to some degree very often invisible. They do not pop-up in our studies, when we do witness studies and they do not belong to a dedicated medical specialty. When you get a heart attack you go to a cardiologist, when you have ME or symptoms like ME you do not belong to a medical specialty which is a huge problem. ME has its own WHO ICD-10 diagnose-code G93.3 which puts it in the group of Neurological Disorders. It is a syndrome diagnosis, which means its diagnosis is built on the presence of symptoms and the typical ME symptoms that ME patients will tell you that they have. The symptoms also included in the different diagnostic criteria are, first and foremost, profound fatigue and fatigability, Post Exertional Malaise (PEM) and Post Exertional worsening of all their symptoms. All their symptoms get worse when they exert themselves too much. Dr. Louise Brinth – Challenges and care Dr. Louise Brinth is a medical doctor and said that medical professionals use diagnosis to sort/classify www.investinme.org We have many different names for this disorder and it is very difficult and almost impossible to ascertain to what degree these diagnostic entities overlap. The medical aetiology is very unclear. A lot Page 58 of 82

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