I know just how you feel. Perhaps we have to form our own group somehow. Perhaps we have to reach out to other ME/CFS patients. I'm not sure how since I'm not that handy with the internet. A ground roots group seems more and more like the only way to make any headway, to get someone,
somewhere to listen. The major researchers seem to be interested in research not living, breathing people whose lives have been damaged. We are not numbers. We are individuals who have been robbed of normal lives. Our personal relationships and our relationships to the communities we live in have been cut short so we really don't count anymore. Damaged goods. Disappeared people. It's time for us to speak up and get help somehow. We are not the same as the Post-Covid individuals that the top researchers want to lump us with. ME/CFS may be a post-viral syndrome but it didn't arise
just when post-Covid or long covid did. We deserve to be in our own category. We deserve own care and concern. We need to unite. We need to find someone with internet savvy. Most important of all, we need to find someone who really cares about us as human beings whose worthwhile lives have become nearly worthless in the eyes of society. On this very Mayo Clinic site, there is no ME/CFS Connect site. This would be wonderful way to start the ball rolling. So I ask the Mayo to think about how they help. I ask them to listen to us, too take another look. I appreciate your response and hope others will also respond.