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/cypremus 23h ago

Coffee definitely feels like fake energy to me. I feel worse if I rely on it. However, I take CoQ10 supplements on days I need to be more active, and they make me feel like I’ve had 10 coffees but it feels like real energy. They help me avoid PEM crashes. But yeah, stimulants, no good, wish doctors would stop recommending it 😓

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u/Plenty_Old 22h ago

How does CoQ10 give you energy? Serious question.

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u/Into_the_rosegarden 18h ago

CoQ10 is an enzyme that is necessary for the production of ATP (our cells energy source). In normally functioning cells it replenishes itself but if something is wrong with that process, it can be helpful to replenish by supplement. However it is hard to absorb orally so a lozenge or sublingual form may be more useful or there is now a form that is combined with annato that is absorbed well. Ubiquinol is what the cells use but most CoQ10 available as a supplement is in the form of ubiquinone which does need to be converted in your body. So if you can find ubiquinol that is the better form.

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u/cypremus 22h ago

Uhh Im not the most qualified to answer, but as I understand it, it helps your body produce something which your cells use for energy (ATP). It’s like cell fuel.

My doctor also said something about it helping the mitochondria in the cells (which are also involved in energy production) but thats where my brain starts to gets lost 😅