Not to get too morbid but, have you ever thought of requesting and prepaying for your own autopsy? About 10 days ago I posted about a person's legal right to have input into their own death certificate. Now I am asking what can be learned from having an autopsy? About 5 to 6 years into have ME/CFS, I developed a whole new set of symptoms. Severe muscle issues and breathing issues. I am now diagnosed with something called Antisynthetase Syndrome. It is very rare indeed. To my mind I had ME/CFS and it led to the Antisynthetase Syndrome. 1. They would still be saying I had chronic fatigue syndrome and all I needed to do was exercise and CBT except for the fact that I paid to have the 2-Day CPET test done at Workwell. This showed cardio/pulmonary issues in every category. Once I did that, they did indeed conclude that I had unexplained interstitial pneumonia. This is no way explained all my symptoms nor the level of drop from day one to day two that we are all aware of by now. 2. Once I got the NSIP (non specific interstitial pneumonia) diagnosis, they simply dropped the CFS and monitored me for three more years. They did not understand why I was saying I was as sick as I was. Finally as I was preparing to see the surgeon to have an open lung biopsy, I asked to have a myositis panel done which revealed that I had a the Jo-1 and Ro52 antibodies. I was simply told I no longer needed the biopsy. And they are about to start me on high does steroids and immunosuppresive therapy. If that doesn't work, the next suggestion is Rituximab. I am now very ill and I am preparing my final directives and I am thinking of setting aside $5,000 for an autopsy. But how would one do it? What would you ask for? I want my kids to have answers. At this point my death does not feel imminent, but too many factors are getting "baked into the cake" at this point. Also, is there a National Registry of some kind? Two articles to consider: https://www.propublica.org/article/without-autopsies-hospitals-bury-their-mistakes and http://online.wsj.com/public/resources/documents/hb4.htm It all leaves me with no confidence in any medical practitioner I deal with. I almost feel like I could go to a kiosk and get just as much help.