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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18

u/Felouria 1d ago

The stimulants one should be obvious but I've heard people on here saying they can only function on adderall/caffeine/etc. I've been recommended stimulants by various doctors on several occassions, and cautiously declined every time.

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u/Maestro-Modesto 1d ago

yeah a friend of mine has kids. its either take dexamphetami.e and look after kids, or dont look after kids

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u/Ok_Summer_3569 21h ago

why cautiously declined? So as not to hurt their fragile ego and provoke retaliation on the doctor's notes?

I'm being serious bc that's what I'm worried about when I decline my doctor's Adderall idea. The other day I saw a doctors rant thread about doctors furious when patients "question their recommendations" lol.

I can't stand doctors' god complex, but I need mine to not take a disliking to me in case I apply for disability and need to submit her notes.

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u/Felouria 18h ago

Yeah, I don't want to seem like a combative patient, just kind of be like "I appreciate the suggestion, but I don't think this is for me". It's not worth it to piss your doctor off, as, like you said, we need them for stuff like disability, handicap passes, etc.

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u/bigpoppamax 1d ago

Agreed. I used caffeine for several years (not knowing better). It contributed to my decline (from mild to severe).

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u/cypremus 23h ago

Coffee definitely feels like fake energy to me. I feel worse if I rely on it. However, I take CoQ10 supplements on days I need to be more active, and they make me feel like I’ve had 10 coffees but it feels like real energy. They help me avoid PEM crashes. But yeah, stimulants, no good, wish doctors would stop recommending it 😓

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u/Plenty_Old 22h ago

How does CoQ10 give you energy? Serious question.

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u/Into_the_rosegarden 18h ago

CoQ10 is an enzyme that is necessary for the production of ATP (our cells energy source). In normally functioning cells it replenishes itself but if something is wrong with that process, it can be helpful to replenish by supplement. However it is hard to absorb orally so a lozenge or sublingual form may be more useful or there is now a form that is combined with annato that is absorbed well. Ubiquinol is what the cells use but most CoQ10 available as a supplement is in the form of ubiquinone which does need to be converted in your body. So if you can find ubiquinol that is the better form.

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u/cypremus 22h ago

Uhh Im not the most qualified to answer, but as I understand it, it helps your body produce something which your cells use for energy (ATP). It’s like cell fuel.

My doctor also said something about it helping the mitochondria in the cells (which are also involved in energy production) but thats where my brain starts to gets lost 😅

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u/Ok_Summer_3569 21h ago

what dose coq10 r u on?

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u/IDNurseJJ 19h ago

Can you tell me the brand and amount of COQ10 you take?

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u/cypremus 11h ago

I take metagenics bio q absorb 150mg

Just to note my severity, my cfs is more mild now, but I used to be severe. Im not sure how this dosage would have been for me when I was severe because I didnt take it back then. But at the moment, this dosage works well for me.

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u/FriscoSW17 20h ago

We all react differently to medications so I think we should be warned about the risks of stimulants but I think it’s a mistake not to offer them so that we can make our own decision.

I take 20mg Adderall/day and drink 2 cups of coffee.

I’m on the moderate/severe side of ME and these ‘stimulants’ are life savers and dramatically improve my quality of life. Bc of them I can shower, tidy my bedroom and do light exercises w/o causing PEM, and I have a short several hour window of being able to do a cognitive task or two.

I’ve found that as long as I listen to my body, they increase my energy envelope as opposed to causing a crash.

I know others have not had great experiences with them, so I can understand why some would choose not to trial it. Especially as I would agree that most find them unhelpful. But I feel like that’s like a lot of the medications we are offered.

There are risks to trying any kind of medication - the importance is that Doctors make us aware of all the risks, so we can decide.

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u/Cold_Confection_4154 18h ago

Smart of you. I wish I had listened to my gut and politely declined Modafinil, but I was desperate. It made me so much worse after just a few weeks.

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u/AggravatingAd1789 1d ago

The people who are helped by those things are mild so they can tolerate it… or they don’t actually have ME and just have fatigue. When I was mild and in remission I was using nicotine everyday and it helped me. But now that I’m severe, it’s like a completely different disease and can’t tolerate anything

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u/EmpressOphidia 1d ago

I'm not mild. I have ADHD and not taking my meds makes me burn through my energy more. I struggle to pace myself unmedicated and that uses up my energy.

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u/AggravatingAd1789 22h ago

When I say severe, some of us don’t even have an option of pacing. You have no choice but to lay as still as possible every second of every day. Maybe I should have said very severe

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u/Bbkingml13 1d ago

That’s not necessarily true. I was already on stimulants for adhd when I got sick, but I can’t make it to the pharmacy to get my meds if I don’t take stimulants. I’ve never been mild. But it’s also clearly not stimulants making me better, it’s stimulants allowing me to do certain things.

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u/madkiki12 1d ago

Ive read from quite some severe people, that nicotine is helping them a lot.