What is important to realize is that people who have this disease cannot and should not be expected to do things like create support groups, lobby, and organize to improve conditions, because they are ill. He is fortunate to be able to do this, as it is demanding. And it doesn't mean he is not ill. Being met with skepticism is demeaning. We should not have to educate everyone we meet. People need to know about this, just as they know about cancer. But most of all, health professionals need to be far better informed and trained, which they generally are not. The medical profession is far behind the research and the true-life experiences of people. Long Covid is finally giving them a clue, but they still don't recognize the connection. The academic core of Medicine, and how students are trained, is where change has to happen. Specialists need to be produced so people can get appropriate treatment. It has been over 40 years since this illness was recognized. And yet it still gets so little recognition or support. No telethons, no major fundraising organizations, no groups of celebrities, save for a few individuals. Medicine must admit it exists, is real, and that they need to do much better. Let Minnesota lead the way, if need be. But think nationally, not locally.
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