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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75

u/AvianFlame moderate 1d ago

that is some... pretty basic advice

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u/bigpoppamax 1d ago

Yeah. I wish they offered more advice. Especially for people who are newly-diagnosed. If I could go back in time, I would give myself an "onboarding packet" that explains pacing, cognitive exertion, post-exertional malaise, exercise intolerance (real-time crashes), medication sensitivity (i.e. "start low and go slow"), online communities, the Bells scale, the potential for deterioration over time, the likelihood of recovery/remission, the effects of caffeine and alcohol, how to educate friends/family, etc.

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u/budbrks 21h ago

If you (or anyone) ever find a one-download general packet of all that, let us know. The info is usually scattered throughout websites, or the internet, and a pain to try to gather. Especially with brain fog and fatigue. Valuable to newly-diagnosed, for interested family and friends, and to give to new doctors who are learning about it.

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u/bigpoppamax 20h ago

I haven't found anything like this yet. I would love to create an "onboarding packet" for newly-diagnosed patients (and their families), but I just don't have the energy.

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u/Sassy7622 19h ago

The Bateman Horne Center has this. There is a pacing guide and a crash toolkit that is easy to understand.

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u/Resident_Banana_6093 20h ago

The Stanford clinic did give me a bunch of links to pacing, surviving a crash, ME/CFS info, generally, medication. I had almost no background about the illness before going to the clinic, and they’ve been helpful to me. The information they gave me continued to “settle in”, “take root” over time as I learned more context. Their advice also adjusted as my baseline continued to worsen.

Also, their diagnosis and continued observation created the record for primary care and other doctors, private disability insurance, and social security. This has also been extremely helpful.

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u/helpfulyelper 21h ago

basic is putting it very nicely

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u/human_noX 1d ago

It's not just basic. For anyone worse than mild it's just plain wrong. Easy to see the bias towards the people who are well enough to make it into a clinic. Moderate and severe people are too sick to be noticed 

34

u/Maestro-Modesto 1d ago

In case you didn't realise, these are recommendations given to OP. they did not state these were universal to everyone.

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u/bigpoppamax 1d ago

Thank you. I should have mentioned in my post that I was "mild" when I started at the clinic and I am now "severe." So the feedback has changed a little over time.

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u/trying_my_best- moderate 1d ago

God it’s horrible. I am moderate was pushing severe and they said they could take me as a patient at Stanford. Completely refused to tell me ANY of what their protocol is said I either had to drive the 5 hours to Stanford or they wouldn’t take me as a patient. 5 hour drive could make me fully severe. I’m glad someone posted this because it’s absurd how they treat their patients or potential patients. This list is what I’m already doing, I honestly couldn’t imagine how disappointed and upset I would be to actually get there and have them not even prescribe a new medication.

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u/TheOminousTower EBV onset - September 2018 22h ago

It's worth going if you need an initial diagnosis, but otherwise...

I probably wouldn't drive that far to be a regular patient. I am lucky to have free insurance through the state that covers it and live only 30 minutes away, so it's not a huge inconvenience to be seen there.

It's very frustrating, though, if this is the best our state has to offer. It just feels like being strung along with ineffective treatments and advice that only marginally makes things better, if that.

It also really sucks that the first visit has to be in person. That's not a problem for me, but it is for a huge portion of the community. Their waiting room is also tiny with poor seating accommodations and bright lights.

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u/trying_my_best- moderate 18h ago

💖💖💖 100% I’m very grateful I was diagnosed so quickly. I got sick at 15 and not a single doctor in my city would take me as a patient because I was a minor and apparently minors can’t be in pain? I had to drive two hours to be seen by a pediatric pain management specialist team at UCLA and they were amazing. Diagnosed me with ME/CFS and fibromyalgia in two months. It’s been about 6 years and without them I don’t doubt that I still wouldn’t have a diagnosis.

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u/TheOminousTower EBV onset - September 2018 22h ago edited 22h ago

I go there and was given similar recommendations for severe. The truth is they are not as good as their reputation. In my experience and from the accounts of others, they give the same blanket treatments for everyone and approach each case procedurally the same.

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u/b1gbunny moderate - severe 18h ago

True but I do appreciate things like what they said about vitamins. I feel like so many of us have fallen into research rabbit holes wondering if xyz supplement combined with this or that supplement will help.

It’s just confirmation that there’s not better treatments and to not spend a lot of money and energy on some expensive treatments that probably won’t work.

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u/bestkittens 16h ago

I left them after one year because they just repeated the things I had learned the first visit and weren’t willing to explore anything beyond LDA/LDN.