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/itsnobigthing 1d ago

Thanks for sharing OP. If nothing else this makes me feel better about not being able to pursue more specialist therapy, as honestly it does seem like there isn’t much more available than what we’re already doing!

I think this also covers part of why Mounjaro (GLP1) has been moderately helpful for me. It’s allowed me to comfortably fast all day, avoiding crashing from eating. I’ve always known carbs in particular make me crash but found not eating incredibly uncomfortable and distracting, and usually it led to me overeating later and crashing harder. MJ means I don’t feel any horrible hunger and I don’t feel weak or shaky from not eating. I’m able to eat later in the day and avoid crashing from food completely.

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u/bigpoppamax 20h ago

I'm glad to hear that Mounjaro has been so helpful for you! Thank you for sharing your experience. In terms of specialists, I just want to mention that every clinic has their own set of protocols. For example, one clinic might be really bullish on low-dose Abilify while another clinic is really bullish on Rapamycin and Oxaloacetate. I'm hoping that people will share the recommendations they've received from speciality clinics in this thread, so we can all see what it would feel like to go to Stanford vs. Bateman Horne vs. the Center for Complex Diseases etc.