Long COVID and ME/CFS: Retraining the Brain's Blood Vessels
Rachel caught COVID, and her life went off the rails. Heavy brain fog, dizziness, and malaise so deep she spent her days in bed in a dark room, unable to work.
What Rachel was told: ME/CFS after long COVID
Rachel walks away with a label, ME/CFS from long COVID. It describes how she feels. It can't tell anyone what's broken, or what would help.
What we found
COVID left the blood vessels in her brain unable to regulate themselves. Upright, she loses about half her brain's blood flow. Her balance system still works, and that gives us a way in.
Her brain's blood vessels lost their reflexes
The infection reached the lining of Rachel's blood vessels, called endotheliitis, and damaged the reflexes that let them tighten and relax on cue. Her brain's blood flow now just follows her blood pressure, so when she's upright, about half of it drains away. Her treatment couldn't target one spot in the brain. It had to retrain those vessel reflexes, gently, until they worked on their own again.
How we got Rachel better (In the clinic, step by step)
Rachel's balance system worked well, so her plan used it to wake up the reflexes in her blood vessels, and then trained those vessels gently.
- GyroStim (Flat spins only). First, the GyroStim. This chair can move a person in every direction. For Rachel, it only spun her flat, which works the horizontal canals of her inner ear.
- Neuro20 suit (While she pedals). Second, the Neuro20 suit. Electrode pads across her big muscles amplify the signals from her body to her brain while she exercises.
- Pedaling, watched by end-tidal CO2 (Lying flat, a PEM monitor on every breath). Third, a simple bike, lying flat. With ME/CFS, the word exercise is scary, because doing too much means a crash the next day. That crash is called post-exertional malaise, or PEM. So the whole time she pedals, a capnograph reads the carbon dioxide at the end of every breath, her end-tidal CO2. We use it as a PEM monitor. It shows us what she can do without overexerting, before she goes past her metabolic capacity and crashes.
- Tilting up while she pedals (A few degrees at a time, CO2 still watched). As her tilt tests improved, we tilted her up a little at a time while she pedaled, with the capnograph still watching every breath.
Rachel, after her treatment
- Normal brain blood flow upright, after losing about half
- No crash the day after activity
- Sleeping better
She stopped crashing after activity, slept better, and felt a little better each day. She kept building until she went back to work and back to taking care of her kids.
Watch the case video
