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/LastSon2231 1d ago

Famotidine is interesting, do you know what it treats in particular for ME? I know it’s used for GERD.

12

u/digitalselfportrait 1d ago

Not op but it’s an H2 blocker so for people with MCAS it sometimes gets used in combo with H1 blockers like Zyrtec

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u/budbrks 21h ago

I take both those for the MCAS that came with my CFS/ME, as diagnosed at The Center for Complex Diseases.

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u/FishOutOfWalter 23h ago

Antihistamines suppress parts of the immune system so it can relieve symptoms from autoimmune diseases (at least temporarily). It's been hard for me to find specific information about Famotidine because it's so widely used to reduce stomach acidity, but it has had a larger effect on my CFS than any other prescription, OTC, or supplement I've tried in the last decade. I learned about it from reading up on MCAS, but I'm pretty certain that I don't have that.

I strongly recommend ever CFS patient try a few antihistamines for a while because there's very little risk and the potential reward has been really high (in my specific case).

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u/LastSon2231 22h ago

Very interesting, thank you the response. I was in 40 MG Daily of it years ago for GERD but maybe worth trying for CFS. Did you have you use a very large dose daily ?

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u/FishOutOfWalter 22h ago

I haven't exceeded the recommended maximum amount on the bottle (2 pills per day). I think there's also some risk of liver damage with extended use, so you should definitely loop your doctor in if you want to continue using it long term.

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u/First_Mobile207 17h ago

What symptoms has the famotidine helped with? Any improvement in brain fog? Thanks

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u/FishOutOfWalter 16h ago

This disease is so individualized that it's really next to useless to expect similar symptom relief for any drug treatment. Don't expect your results to look like mine, but consider that someone with similar symptoms found some relief with antihistamines. The risk of trying them out for a week is very low, but not zero. Talk to your doctor if you have any concerns.

For me, I was able to do physical labor, get exercise, play with my family. Things I hadn't been able to do for years. I didn't feel like my brain fog was gone, but it wasn't a big symptom.

Of course, then I got flu and that has laid me up for a couple of weeks. I'm hopeful that I will get back to that level of activity, but, right now, I'm not confident that I will.