When I first became ill almost 3 years ago, I had Kaiser Permanente insurance here in SoCal through my job. I saw a couple infectious disease doctors who didn't provide me with any guidance as far as treatment or symptom management. I remember having a follow-up with the second of these two doctors over the phone. She called me in the morning as I was driving into work, feeling terrible as usual and dreading the walk from my car into the office to try and get some work done for the day. It's hard to admit as a 20-something year old guy who used to be a collegiate athlete, but when all she told me was to see a psychiatrist and work on my "sleep hygiene", I cried in my car because I knew that this wasn't going to fix any of my problems. I just felt hopeless. Switching to my employer's better insurance plan allowed me to see many of the top doctors in LA, some of whom were also terrible, but I found a rheumatologist who has been utterly amazing. Under his care I have improved a bit and actually have things to look forward to about life. Hopefully these changes to Kaiser Permanente will allow people like me to have more options when terrible things like this happen to people like us. I think right now, the ideal scenario is to have well-trained clinicians in many specialties who are connected to a network of GP and infectious disease doctors who can refer new PWME out to each specialty to get full workups and trial some medications to control symptoms. Not necessarily big, risky treatments either - LDN, beta blockers, Florinef, Plaquenil, and other safe, cheap drugs have helped a significant number of us with symptoms quite a bit. This would be more than an incremental improvement to healthcare for PWME and it wouldn't require any research breakthroughs at all.
