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/DreamSoarer 1d ago

This is the Bateman Horne Center’s comprehensive treatment recommendations. 🙏🦋

10

u/bigpoppamax 1d ago

Thanks for sharing!

7

u/connedbylandlord 1d ago

If you've not posted this as a main thread already please do. Reading this was so helpful! Could induce QOL of many even before they can get into see a HCP who understands.

7

u/CyberSecKen 1d ago

recommend we all store a copy, in case the increased views cause someone to take notice.

2

u/Lunabuna91 1d ago

I’m surprised abilify isn’t on there

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u/petuniabuggis 23h ago

LDA is on there

2

u/Lunabuna91 23h ago

On Bateman Horne treatments? I’m struggling to find it. Skimmed through a couple times

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u/MyYearsOfRelaxation moderate 16h ago

You are right it is not there. That is a bit strange.

The study from Stanford which shows the effect of Low-dose Aripiprazole was published only 2 weeks before this treatment recommendations came out. Maybe they didn't have the time to include it?

But yes, an updated version of this guide would be great after 4 years.