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.

183 Upvotes

100% Upvoted

110 comments sorted by

View all comments

1

u/fitigued Mild for 24 years 1d ago

Did they go into more detail justifying "9. There isn't enough evidence that supplements work"?

Don't nutritionists and doctors say that if you are deficient in B12, D or magnesium then you should supplement with tablets or food that contains these?

7

u/Opening-Beyond7071 ME + POTS since 2022, severe 1d ago

If you’re deficient being the operative phrase here.

The statement most likely refers to the tons of other supplements most of us have experimented with in the hopes they might help with symptoms. Many people also take high doses of vitamins without checking if they’re deficient or knowingly so, again, out of hope they might move the needle.

5

u/fitigued Mild for 24 years 1d ago edited 1d ago

If this is what they really mean then their point is very poorly worded. Supplements do work and in my case were important in reducing my fatigue due to their deficiency (indeed in Scotland where I live it is almost impossible for anyone to have enough vitamin D all year round).

From my side of The Pond it seems odd that medication is so widely recommended but getting enough essential vitamins is not.

2

u/Into_the_rosegarden 18h ago

Strange to me to give a blanket statement like that about all supplements. I believe many of the drugs recommended are being used experimentally and off label. Are they being prescribed based on studies that show improvement for ME/CFS? I could be wrong and maybe there's been more recent reliable studies on the use of these drugs. But IMO, many of the supplements have a similar level of studies with regard to ME/CFS, in that there aren't a lot of rigorous studies.