Intra brainstem connectivity is impaired in chronic fatigue syndrome, Barnden et al., 2019

[rvallee]

I had a rather similar experience in the first few years of my illness. At the peaks I never quite got good enough to resume normal life, but after improving for several months and starting to dream about being recovered again, the crashes were emotionally hard to take. I eventually noticed the crashes were precipitated by catching a cold. After 6 or 8 years the cycles just seemed to stop, leaving me permanently nearer the troughs than the peaks.

And these things can have huge consequences. Bad medical advice is not inoffensive just because of a belief system that declares it so against all evidence.

In my last remission I was doing well enough that I had resumed full-time work and bought a condo with my then girlfriend. Soon after that I had a huge relapse that meant working was impossible for about the next year or so. Had it not been for a stroke of enormous luck that allowed us to be freed of the contract I would likely had ended up tens of thousands more in debt than I already was. I either would have had to declare bankruptcy or would still be spending most of my disability on it. I still faced nearly $10K in debt when I had to move in with parents and for 2 years spent most of my temporary, and reduced, disability on it until I finally got it permanent and with some of it backdated.

How many people have fallen on the wrong side of that stroke of good luck? How many people have faced a barely manageable level of hardship only to be pushed completely over the top by circumstances brought about purely from following misleading and objectively wrong advice?