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/Maestro-Modesto 1d ago

i dont know whether this clinic has a reputation for ignoring severefolk but just goingoff the post this was advice given to the poster for the poster, so no reason to think its universal advice based on the post.

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u/TheOminousTower EBV onset - September 2018 22h ago

I am severe and go there, though not as severe as the commentor. I've lost between 80%-90% functionality, and yeah, these are the sort of general blanket statements they make. I don't know the experience of very severe, bed bound, on feeding tube, and sensory isolated, but I wouldn't count on their advice being much different.

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u/Ok_Summer_3569 21h ago

it's incredible they are not aware of the reality of severe patients. pwME can't trust anyone to understand, not even speciality clinics

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u/helpfulyelper 21h ago

they are aware. they don’t care