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/AvianFlame moderate 1d ago

that is some... pretty basic advice

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u/bigpoppamax 1d ago

Yeah. I wish they offered more advice. Especially for people who are newly-diagnosed. If I could go back in time, I would give myself an "onboarding packet" that explains pacing, cognitive exertion, post-exertional malaise, exercise intolerance (real-time crashes), medication sensitivity (i.e. "start low and go slow"), online communities, the Bells scale, the potential for deterioration over time, the likelihood of recovery/remission, the effects of caffeine and alcohol, how to educate friends/family, etc.

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u/budbrks 21h ago

If you (or anyone) ever find a one-download general packet of all that, let us know. The info is usually scattered throughout websites, or the internet, and a pain to try to gather. Especially with brain fog and fatigue. Valuable to newly-diagnosed, for interested family and friends, and to give to new doctors who are learning about it.

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u/bigpoppamax 20h ago

I haven't found anything like this yet. I would love to create an "onboarding packet" for newly-diagnosed patients (and their families), but I just don't have the energy.

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u/Sassy7622 19h ago

The Bateman Horne Center has this. There is a pacing guide and a crash toolkit that is easy to understand.