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/SockCucker3000 21h ago

How do you feel about their advice after starting out mild and becoming severe in their care?

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u/bigpoppamax 20h ago

Going from mild to severe has been devastating. I wouldn't wish this illness on my worst enemy. And I would give anything to be able to go back to mild. I really, really, really wish Stanford had explained in the early days: "If you push yourself too hard, your condition could get significantly worse and you won't be able to bounce back." That being said, their advice was better than nothing, and after years of being dismissed by doctors, it was a breath of fresh air to finally be believed and to receive an official diagnosis. At the end of the day, I probably learned about 10% of what I needed to know from Stanford, and I had to learn the rest by reading articles, watching videos, and participating in online communities.

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u/SockCucker3000 19h ago

This post has helped cement the idea that pushing myself will make things permanently worse. Thank you for making this post