I too was going to mention EBV I never knew I had it until the COVID vaccine caused a flare. I felt so horrible for so long and tried 5 drs. within 3 years. Finally asked for the test. Dr said I have chronic EBV which explained many things over my life span. Unfortunately our system doesn't focus nor treat EBV itself but as you describe push you from pillar to post. The UK has more literature on the subject but also falls short. I unfortunately like you once believed it was about helping and had a spinal fusion. Huge mistake(for me) Our medical do good things however many are waking up to how the system works. Not sure when it took this turn but it's so very sad. Saying you are not alone isn't enough and oh how you are not alone there are many of us...I'm with and hear you but real change needs to happen especially for our children and generations to come.