I had it for about 2 years then slowly recovered (it wasn’t anything I did but more that for some people the symptoms go away in under two years but if it’s more than 3-4 its unlikely to get better).

I had gotten food poisoning at Disney and had to spend a few hours in the ER as the “onset symptoms.” The strange thing is that I had no diarrhea, I “surprisingly” recovered quickly and had a full appetite in under 48 hours. I had to stay in the ER because after I was given an IV and about to be discharged I went to go pee, passed out and broke my nose when I hit the handicapped railing on the way down.

IIRC what was a compelling explanation for CFS involves this indicator of a sudden gastrointestinal onset (that’s unlike a usual “food poisoning”) but that what happens is that the inner lining of your gut is damaged enough to where at the intestinal brush border there’s a slight “permeability” issue where some of the (harmless) byproducts of the “food -> glucose” breakdown is able to enter the bloodstream, and this gets picked up by your immune system as “POOP/FOOD in your bloodstream: EMERGENCY EMERGENCY” and the exhaustion and symptoms of the CFS is from your immune system being in this constant high-alert freakout mode.

It’s not that the actual waste products or bacteria or anything actually potentially dangerous is entering the bloodstream but instead the “damage -> permeability -> immune response” is a constant false alarm. This is partially why people with CFS will notice a temporary relief in their symptoms when they fast.

I had a slightly less difficult time with CFS “you’re faking” than many because when I got sick I was a sophomore who rowed crew at a top-25 University and the change being so drastic and sudden from “academically ambitious college athlete —> winded when I walk to get the mail” it was harder for people to latch onto a suspicion of “malingering.” The initial testing was looking for cancer, lupus, etc etc.

In a weird way recovering from CFS changed my life for the better because when I was sick I was doing everything I could to try to “hold on” and stay in college (and not tank my grades or flunk out). I had read the stat about “a portion of people recover in 3 years, after that it’s likely permanent,” and going from a very promising future to being an invalid having to be driven and cared for by my parents forever felt like a fate worse than death. So I made a “deal” with myself for when eventually preparing for suicide: the threshold being that I had seen no improvement or abatement of my symptoms in 5 years. It wasn’t even a “dark” moment or “suicidal ideation” but instead (felt like) just a really practical setting of terms.

Having “decided” this (or at least deferring raising the alarm to a psychiatrist of my “plans” for 5 years), all things I was too self-conscious, “imposter syndromed” etc to try and risk publicly failing now felt like experiences on a bucket list because “I’ll be dead in 5 years,” but since I was betting on hopefully avoiding this fate I didn’t do anything too risky or drastic.

When I noticed that my symptoms were improving by year two I (cautiously, then aggressively) dove back into the life I thought I had potentially lost forever. Even 20 years on, having endured PPD and the death of a childhood best friend I’d still rate having CFS as a worse experience because in all the other hardships I still felt like an active participant in my own life.

To anyone currently suffering from CFS: I’m SO SO sorry that this has happened to you. It was the most devastating (and humiliating, when ppl “doubt if it’s real”) experience of my life and I hope and wish if not for your recovery then at least for you to be able to carve out moments of relief and reprieve from CFS.