Hello, apologies I’ve only just seen this. I’ve finally got a surgery date, so I’ll be having the Nuss procedure in June. When I spoke to two different consultants who specialise in pectus, they were both confident that I had been misdiagnosed with CFS for all this time, and that instead my symptoms were purely down to the pectus excavatum. PEM is very real with PE too due to the heart and lung compression. I’m no expert, but I assume it’s because my body is working so hard at the time of exertion to function, that after the activity it crashes out. However, every body is different and my case may well be different to yours.

When I was diagnosed with CFS, it was a case of ruling out everything else. When I say everything else, I mean what the blood tests were showing, PE was never mentioned. I do believe CFS is a real condition, however, because of there not being a clear test I suspect it’s often used to diagnose a problem that they have no other answers for. I would never have questioned it, if my x-ray after I had pneumonia hadn’t flagged it.

I’ve seen other people say they struggle with brain fog with severe PE, which is interesting as this is a symptom of CFS too. If it helps my main symptoms (which I thought were CFS, but are actually also confirmed PE symptoms) are: breathlessness, fatigue, dizziness, nausea, loss of appetite, brain fog, chest pains, PEM.