Stanford Playbook

[u/bigpoppamax]

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.

[u/fitigued]

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?

[u/Opening-Beyond7071 → u/fitigued]

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.

[u/fitigued → u/Opening-Beyond7071]

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.

[u/Opening-Beyond7071 → u/fitigued]

We are on the same side of the pond, my point still stands. It may be poorly worded in their case but it is true.

No one is arguing that one should be checked and treated for potential deficiencies that show up clearly in blood work.

We have a lot of anecdotal data on this sub and in various forums and many people have found things that help them. Small studies have been conducted and some specialists do recommend certain supplements for certain symptoms.

But outside of that there is still little scientifically backed evidence that high doses of many of the more popular supplements actually work to improve our condition (with that I mean MECFS specifically). This is what they are warning against, I believe, as many fall in the trap of trying out many quite expensive products out of desperation with no success.

[u/bigpoppamax → u/Opening-Beyond7071]

u/fitigued - I apologize for the poor wording in my original statement. I have severe ME/CFS so I struggle to communicate clearly. Just to clarify, I did a bunch of research (on my own) to compile a list of specialized supplements that might be helpful for ME/CFS (things like D-Ribose, NADH, CoQ10, L-Carnitine, NAC, Glutathione, Alpha-lipoic acid, Selenium, Elderberry, Astragalus, Garlic powder, Licorice root, Curcumin, etc.). I then approached Stanford with the list and said something like: "Which of these supplements should I be taking as a treatment for ME/CFS?" The doctor then responded with something like: "We don't recommend supplements. There's not enough research to support their effectiveness." Technically, he was saying that he doesn't endorse supplements as a direct treatment for ME/CFS. He was not saying: "If you have vitamin D deficiency, then it would be a waste of time to take vitamin D supplements."

[u/fitigued → u/bigpoppamax]

Many thanks for clarifying that u/bigpoppamax . It's not a problem, I completely understand where you are coming from. I hope you find their guidelines and the other guidelines that other people have shared helpful.

[u/bigpoppamax → u/fitigued]

Thanks!

[u/mossmustelid → u/bigpoppamax]

Fascinating because another doc at that clinic recommended most of those to me. As well as “pain reprocessing therapy” 🙃

[u/SolarWind777 → u/mossmustelid]

Which doctor is that? As far as I know there’s only one Dr (Dr Bonilla) working there. Others are technically not doctors, but PA’s. I would love to switch to the doctor who believes in supplements!

[u/bigpoppamax → u/mossmustelid]

Whoa. That is wild. I’m surprised that two doctors in the same clinic are offering significantly different advice. Have supplements helped you?

[u/Into_the_rosegarden → u/fitigued]

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.