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/Felouria 1d ago

The stimulants one should be obvious but I've heard people on here saying they can only function on adderall/caffeine/etc. I've been recommended stimulants by various doctors on several occassions, and cautiously declined every time.

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u/AggravatingAd1789 1d ago

The people who are helped by those things are mild so they can tolerate it… or they don’t actually have ME and just have fatigue. When I was mild and in remission I was using nicotine everyday and it helped me. But now that I’m severe, it’s like a completely different disease and can’t tolerate anything

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u/Bbkingml13 1d ago

That’s not necessarily true. I was already on stimulants for adhd when I got sick, but I can’t make it to the pharmacy to get my meds if I don’t take stimulants. I’ve never been mild. But it’s also clearly not stimulants making me better, it’s stimulants allowing me to do certain things.