@TheRealMcCoy aka Meghan

FOR ALL MILD AND MODERATE #MECFS PATIENTS you guys take up 75% of the patient population. When you talk about what me/cfs is like, for the love of god don’t describe it at your level. Cancer and other illnesses are defined by the WORST of it. It’s not defined by fast diagnosis, fast treatment, no symptoms and easy recovery. HIV is defined by aids. Cancer is defined by death despite MOST people recovering. ALS is defined by a short life span, rapid, scary breakdown of the body followed by death. I don’t want to hear a single mild, moderate or even severe patient describing this condition as chronic fatigue. This condition at its worst, as said by doctors themselves, is like the last few weeks before death in cancer and aids. The worst of it, is fully bedbound in a dark room unable to speak, eat, or sit up where a simple movement can make you sicker. This is like the last moments of death in fatal illnesses. It is extreme, torturous suffering without relief. Being so sick no one can even hold your hand. It is a chronic state of dying without death because some mechanism in our body still keeps us alive. It is the worst nightmare you can ever imagine. Describe it like that. Then you can say you’re ‘fortunate’ to be at severity 1 or 2 and not 3 or 4. None of us in severity level 4 or 3 who are bedbound want to hear other patients say “chronic fatigue with immune issues”. Be bold. Be accurate. Put some respect on this disease by describing it accurately. If people don’t get absolutely horrified by your description you’re not being accurate enough. Let’s change our language and define the disease by the worst of it, like all other illnesses. #mecfs #longcovid