Hello all, I used to post on this sub under the username u/PatriarchalSnowflake but decided to take a break from Reddit and subsequently lost access to that account. I’m glad to be back. A lot has happened in the months since I’ve been on Reddit so I figured I’d post an update.

First, I had my ICPET done. I’ll try to post something more detailed when I have the energy on how it all went, but in short, I’m so glad I did it. Dr. Systrom found that I have a type of dysautonomia called ‘preload failure’ and also found evidence of mitochondrial dysfunction. It was incredibly validating to finally have abnormal test results come back! Feel free to comment or message me if you have any questions about Dr. Systrom or the ICPET.

Secondly, I started taking Mestinon. It’s not a miracle cure, but I’m so glad to be on it. I no longer get tunnel vision/lightheadedness when I stand up. I also seem able to exert myself a little bit more without getting PEM. I still feel exhausted all the time, so that hasn’t changed, but my quality of life has improved a bit. Quick tip: ask for the extended-release version of Mestinon, otherwise you have to remember to take it 3x/day.

Lastly, after two years of waiting, I was finally approved for SSI. Dr. Systrom’s office provided a wonderful letter detailing my symptoms, the results of my ICPET and the limitations of their ability to treat me. I don’t think I would have been approved without that evidence. I also had a very helpful and sympathetic lawyer, although he wasn’t very knowledgeable about ME/CFS.

I’m glad to be back and I love you guys. I wouldn’t be in such a good place if it wasn’t for all the support and knowledge I’ve gotten from this sub.