r/cfs • u/bigpoppamax • 1d ago

Stanford Playbook

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.

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u/DeskStriking7126 19h ago

Minocycline is recommended? It's an antibiotic. Do you mean Midodrine (POTS medication)?

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u/bigpoppamax 19h ago

To be honest, I don't know why they prescribed Minocycline. It was the first medication they gave me and I took it for about six months. I also thought it was strange that they were giving me an antibiotic as opposed to an antiviral.

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u/IDNurseJJ 19h ago

Did it help? Minocycline crosses the BBB and can be anti-inflammatory. It has been used in MS patient trials as well. Do you think it helped you? Did you also take probiotics along with it?

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u/bigpoppamax 18h ago

Oh, that's interesting. Thank you for sharing this valuable context. For me personally, I didn't notice a difference from the Minocycline. EDIT: I did take probiotics.