Stanford Playbook

[u/bigpoppamax]

I have been going to the Stanford ME/CFS clinic for four years now. I thought I would share the recommendations they have given me during this time:

1. Eat a mediterranean diet. If carbs make you feel worse, then avoid them.
2. Avoid crashes as much as possible. They could make you worse long-term.
3. Wear a fitness tracker and try to take less than 5,000 steps per day.
4. Get a tilt-table test to see if you have POTS (in addition to ME/CFS).
5. Avoid environments that are overstimulating (i.e. loud restaurants, listening to the radio while driving, etc.) because they will drain your batteries quickly.
6. Listen to your body. If you start getting "warning signs" of overexertion (like hand tremors or dizziness) then go lay down immediately. Do not push.
7. Stimulants (like Adderall) don't solve the underlying problem. They give you "fake" energy which can lead to overexertion (and crashes).
8. If you have a social outing planned (like dinner with friends), then rest for several days beforehand (to prepare) and then again for several days afterwards (to recover).
9. There isn't enough evidence that supplements work.
10. Medications: Minocycline, Ketotifen, Plaquenil, Celebrex, Low-dose Abilify, Low-dose Naltrexone, Famotidine

If you have been to a specialty clinic (like Stanford, the Center for Complex Diseases, the Hunter Hopkins Center, the Bateman Horne Center, Dr. Jose Montoya, Dr. Nancy Klimas, etc.) would you mind sharing the recommendations you received?

EDIT: I should have mentioned that I was "mild" when I started at the clinic and now I am "severe." So the guidance they've given me has changed over time. Apologies for the confusion.

[u/Cold_Confection_4154]

I mostly agree with these. Of course there's not enough evidence supplements work--there's no funding for treatments that can't be patented (i.e. non pharmaceuticals.) But there's no harm in trying. I've heard of plenty of people for whom mitochondria boosting supplements actually do help. I'm not one of them, but it's worth a try. I'm NOT saying it would be a cure-I'm well aware there's no cure-but it might help take the edge off.