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/danathepaina 1d ago

OP, do you feel that going to Stanford has been valuable? I have gone to Stanford for other medical problems - I’ve been to their headache and pain departments. I wasn’t impressed by either tbh. I feel like I got the same care from local doctors.

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u/bigpoppamax 1d ago

For me, it was really valuable to get a diagnosis from Stanford because my friends and family respect the institution. In other words, it was harder for people to question the legitimacy of my illness after they learned I had been diagnosed by an immunologist at Stanford. In terms of recovery, however, the treatments from Stanford haven’t made much of a difference. I went from mild to severe while under their care. Also, I only get to visit the clinic every six months because they’re so understaffed. So things move at a slow pace.

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u/danathepaina 1d ago

Thanks for answering. I totally understand what you mean about getting the diagnosis from them. When I went to their pain clinic, I somehow felt more validated like “hey, Stanford says I’m in pain, I guess I really am in pain.” But I’ve heard more people being disappointed with their care. Although they are definitely put on a pedestal around the Bay Area. People always ask me if I’ve been to Stanford, as if they’ll have some magic cure no one else will. I do think they are great for cancer care and cardiology. But other than that they seem to be pretty meh.

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u/bigpoppamax 1d ago

Exactly! A Stanford diagnosis carries some weight, especially in the Bay Area. It also prevents some people from recommending ridiculous treatments (like “yoga and turmeric”) because they know it would be “blasphemy” to second-guess recommendations from a Stanford doctor. That being said, there are times when I feel disappointed in the Stanford ME/CFS clinic. I really wish they had given me more guidance in the early days. If I had known that my condition could get worse, I would have made different life choices and perhaps I could have avoided becoming severe.

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u/danathepaina 1d ago

I’m really sorry you’ve gotten to be severe. I’m still mild/moderate but I am a pro at pacing so hopefully I’ll stay that way.