Whether it's your first time in a post-exertional malaise crash or if you're the newest recipient of the fell for it again award, here you are, laying prostrate with no shot at getting up anytime soon.
This is a scary and dangerous position to be in: I know, I've been there myself - and I never had an easy, straightforward, practical guide so I could prepare myself. So during my latest crash I spent days and nights lying still with an eye mask on, writing and rewriting this in my head, and now that I'm better, this is my chance to give back.
P.S. For the purposes of this article, a severe PEM crash means bedbound. While lighter PEM crashes are fairly straightforward, being bedbound requires a whole different game plan.
You may already know the basics of PEM, but if you've never been in a severe crash before, it helps to visualize what's actually happening at the cellular level.
I've found the most helpful framework to be Robert Naviaux's Cell Danger Response (CDR) hypothesis: your cells have an ancient threat-detection system. When they sense danger (infection, toxins, physical damage) they shift into a defensive metabolic state where they stop normal energy production, seal their membranes, release inflammatory signals, and essentially go into bunker mode.
In ME, the CDR gets stuck in the "on" position. Your cells are perpetually acting like they're under siege. Mitochondria shift from energy production to defense signaling. ATP gets pushed outside cells rather than being used for energy. Purinergic signaling goes haywire. The result is chronic hypometabolism: your cells are running on a war economy... but there's no longer a war.
PEM, in this framework, is what happens when you demand energy from a system that's in defensive lockdown. You push the accelerator, but the engine is in limp mode. The cells interpret the energy demand as another threat, doubling down on the CDR.
Getting out of PEM is simply the reverse: when left alone, eventually this danger response returns to homeostasis - but it takes time! What you're aiming for is to avoid crashing again while you let the set of self-reinforcing loops gradually decay within your body and let things flip back to normal.
When you're in a crash, you have exactly one job: minimize metabolic demand and reduce danger signaling until your cells can exit the CDR state.
Crashing while in a crash not only lowers your crash baseline even further and loses you the amount of time you spend crashing and recovering, you lose the counterfactual time you would have spent recovering... so a 3-day crash within a crash extends your total crash by six days!
If you've been moderate and functional until now, your first severe crash is going to be psychologically brutal. You've probably pushed through mild PEM before and been fine, or seized every moment of feeling better as a chance to test a new limit. That doesn't work anymore. Whatever threshold you thought you had is now lower, and the penalty for exceeding it is higher.
I find it helpful to think of myself as a player in a video game. I have an energy bar for the day that recharges very slowly. My necessary actions: eating, drinking, and going to the bathroom, need to fit within that bar. Everything else, be it texting a friend, cleaning something off the floor, or opening my curtains, are all secondary bonuses I can only take advantage of if I have energy remaining on my bar.
You know when you're on a long plane flight without internet and you stretch everything out to kill time? Eat a peanut. Wait three minutes. Take a sip of your V8, wait three minutes. Go to the lavatory area to stretch. Treat it just like that, except now you're on a flight to the moon. Whatever you need to do during the day, space it out and delay it. Just refilled your water bladder and now you're hungry? You can wait five minutes and rest before you eat. Need to make a trip to the bathroom and feeling fatigued? See if you can wait until the evening when you're feeling better. You should never be urgently moving to do anything - you have all the time in the world.
Nothing within a crash is even or linear:
You might notice that you'll feel better or worse throughout the day (for many, mornings are the worst and nights are the least worst)
You might also notice that as you recover, certain parts of the day yield you better functioning than others.
Once you start to get a sense of your waves, you can plan around them. Perhaps you feel better at night, so you can delay a lot of your phone usage until then. Or if you know you feel bad in the morning, you can plan some eyes-shut time from 9-10:30 AM.
If you're feeling less bad, and all of a sudden you feel a "bad" wave coming, don't resist it and try to do more. Stop whatever you're doing, shut your eyes, and rest. You are much more likely to crash while fighting a wave than testing your limits during a good period.
P.S. you have more leeway to exert before bedtime, because additional exertion can simply be slept off immediately after.
Micropacing is just a cool-sounding name for taking short breaks between bouts of exertion. Though it sounds intuitive, it is one of the most valuable strategies for surviving a PEM crash, and no matter how much you think you're doing it... you probably aren't doing it enough.
Example: you need to brush your teeth. You scoot over to the side of the bed, then wait. You extend your hand, grab the toothbrush, then wait. You move your other hand over to the toothpaste, apply it to the brush, then wait. You move the toothbrush to your mouth and start brushing.
Dr. Perikles Simon, a German physical therapist, encourages 30s work, 30s rest, but do whatever feels right for you.
Admiral James Stockdale, one of the most famous American prisoners of war survivors in Vietnam, was asked about his mentality while under captivity: "You must never confuse faith that you will prevail in the end - which you can never afford to lose - with the discipline to confront the most brutal facts of your current reality, whatever they might be."
Every single person in a severe PEM crash has had the following thoughts: is this my new baseline? What if I don't recover? What if I recover, but then get stuck at some point? What if I keep crashing, will I just keep getting worse until I'm immobile and lose the ability to speak?
Banish these from your head immediately. First of all, you're probably going to recover: generally, people who enter a severe baseline do so from repeated crashes over time, or one very high-exertion event that was way outside of their energy envelope.
Instead of ruminating, focus on the next goal. Maybe it's sitting up for 60 seconds a day. Maybe it's using your laptop for three minutes. Maybe it's having a two minute phone call with a friend. All of your mental dwelling should be set aside for how exactly you are going to rest and strategize to accomplish this goal, not by stressing about a future you can't control.
This one comes from Whitney Defoe, and he explains it better than me, so I'll let him:
By the way, if you're executing your pre-visualized plan and encounter an unexpected obstacle or demand - someone calls, something falls, you realize you need something from another room - you stop, abort, and turn around. I have crashed multiple times when a plan went awry and my ego told me I just needed to get it done anyway.
This is actually mathematically and philosophically provable: in a condition where getting into a worse state construes exponentially more suffering, the downside risk of worsening to that state far outweighs the agonizing boredom of having to do nothing all day.
The point where you need to shut everything down and do nothing is individual - only you can define it, and it's probably a lot higher than you think it is.
If you are nearing that point, put your eye mask on and lay as still as possible for every moment you are awake, outside of eating, drinking, and bathroom. Yes, this is excruciating. But if you do so, the next day you'll be able to add in five minutes of distraction or entertainment. Then 30 minutes. Then hours. And if you don't, you don't want to see where that leads.
These are interventions that some patients find either 1. reduce crash severity or duration or 2. prevent PEM when taken before or just after exertion.
Oxaloacetate is a Krebs cycle intermediate that some ME/CFS patients swear by for crash mitigation. It supports mitochondrial function, may help with NAD+ regeneration, and has some evidence for neuroprotection. Most people will not be responders, so buy the least expensive brand: Benagene, and if it doesn't work for you, you can write to the company and get a refund.
Dosing during crashes: 100-200mg, some people go higher. Take with food. Some patients take it preventatively before known exertion. If you've tried it before while not in a crash and it didn't work, it's unlikely to work while in a crash.
Benzodiazepines (lorazepam, clonazepam) can abort or reduce crashes for some patients, likely through GABAergic calming of the overactivated threat response and/or reduction of neuroinflammation. Low-dose lorazepam (0.25-0.5mg) right after you did something you think will lead to PEM often averts it entirely.
They can also get you through a tough day, like a doctor's appointment, as a "PEM shield".
The tradeoffs are dependence, tolerance, and withdrawal. Unless you're part of a rare subset of people that don't develop tolerance to benzos, this is not a daily-use intervention, but rather a rescue med for severe crashes. Everyone is different, but if you're using benzos more than a few times a month, you may be heading toward dependence.
Protip: lorazepam can be taken sublingually for faster onset. Hold it under your tongue and even if it dissolves into a fluid, hold the fluid in your mouth for 2-5 minutes before swallowing.
Most people know pregabalin for its effects on nerve pain, fewer know that just like benzos, it can work as a PEM shield, taken either right before you feel you're going to crash, or when you just need to have a good day.
Many take them in the evening, as they also have anxiolytic and sleep-promoting effects that are useful during crashes. In this version of dosing, expect a good few hours in the evening and a good few when you wake up. Typically, effects last 12-15 hours.
Dosing: start at 75mg as a test. If you get majorly sedated, that's probably not a good sign for titrating up and pregabalin might not be for you. Good effects seem to start at 150mg.
Like benzos, pregabalin can lead to brutal tolerance and withdrawal when taken frequently. But also like benzos, there are some people that manage to take it every day with no issues.
Made famous by the Bateman Horne Center, dextromethorphan (DXM) is the active ingredient in most over-the-counter cough suppressants: Robitussin, DayQuil, et cetera. It is often taken both before anticipated exertion and during an active crash.
The mechanism isn't fully pinned down, but the leading candidates are NMDA receptor blockade, which may blunt the CNS overactivation that drives post-exertional flares, and microglial modulation - dialing down the brain's immune cells, thought to be chronically overactivated in ME.
Unlike pregabalin and benzos, it's available without a prescription and is cheap. Use pure DXM products like Delsym or generic dextromethorphan HBr capsules - avoid combination cough syrups with guaifenesin, antihistamines, or acetaminophen you don't need.
Dosing typically starts at 15mg twice daily.
Note that DXM does not work for everyone, and makes some people feel worse (people describe feeling "woozy" or "out of it").
Do not combine with SSRIs, MAOIs, tramadol, or tricyclics - serotonin syndrome risk is real.
Random, but avoid drinking grapefruit juice when you take it, as it inhibits DXM metabolism.
If orthostatic intolerance is a major symptom, 1-2L of normal saline during a crash can be dramatically helpful. The effect is partly volume and partly the sodium itself. Some people add B vitamins or magnesium to the bag.
The trouble is getting it: you'd have to order a home healthcare nurse or home IV service, which can be costly.
If you don't have IV access, aggressive oral hydration with electrolytes is the poor (wo)man's version.
Note that all three of these can make you feel worse (temporarily) just as soon as they can make you better, depending on your current mitochondrial bottlenecks.
If you're really looking to get into the weeds, check out the PEM Busters thread on Phoenix Rising. Keep in mind that most of these are anecdotal n=1 reports, so very speculative.
This guide references American products and services, because I am American. There are for sure equivalents in your country, as well!
Access to a water source is primordial. Don't waste time going over to the tap to fill up: order 1.5L bottles in bulk on Amazon. (Bonus: if you're a guy, these double as urine bottles - BODYARMOR 1.5L wide-mouth water bottles are preferred for this purpose).
To save time lifting heavy bottles every time you want to drink (as well as prevent spills), get a hydration bladder, basically an off-brand CamelBak. They're like $12, and if you have a caretaker, you can have them hang it above your head with a nail and just let the hose dangle down so it's always accessible.
Shelf-stable protein shakes. I recommend the OWYN 20g version (not the 32g version which tastes horrible) because they actually have a vegetable mix in them.
I also recommend V8, because you won't be getting many vegetables in. No, it's not just for octogenarians, and in fact it's actually pretty tasty.
If you have orthostatic intolerance, you'll also want to make sure you have electrolyte packets.
Ensure, Huel, Soylent are also worth testing out, as an all liquid diet can be advantageous for digestion (and help you spend less energy on bowel movements). However, these are notably difficult on stomachs, so when trying for the first time, just drink a 1/4 of one as a test for tolerance.
Source food following these guidelines:
Examples of what I've had in the bedside pantry at various times:
In addition to physical food, I also recommend supplementing with a multivitamin (as you won't be eating a varied diet) and fish oil (as your omega-3 consumption will fall).
Note that generally during a PEM crash your appetite will fall. I find that I eat about 1000 calories a day as a 165lb person.
Consider a mini-fridge next to your bed if possible. It will expand your range of foods to simple easy proteins, like sliced cheese, smoked salmon, pre-made hard-boiled eggs, and make your diet much more interesting and protein-rich without a lot more effort.
You may notice that you get very fatigued and sometimes even pass out after the first meal of the day, when you're breaking a fast. Digestion takes energy, and you're in a very low state.
This can be obviated by taking in protein first to buffer any carbohydrates to cause an insulin spike.
Psyllium husk and probiotics may also help. Generally, though, this will go away on its own as you come out of the crash.
Your body doesn't like digesting while laying flat, especially with a messed up autonomic nervous system.
If you start getting this, avoid fat at all costs, as it's the hardest for your stomach to digest.
After you eat, lay on your right side to aid digestion. Elevation helps too, you can get a wedge pillow to help you sit up (though they're massive and unwieldy), or even use bed risers to raise the head of your bed permanently, which might also have the bonus of reducing nocturnal urination.
Amazon is incredible. So are services like Instacart, Doordash, etc. for more immediate needs. You can get pretty much anything you need for a PEM crash delivered right to your door in 45 minutes to three days.
If you buy from Amazon, and they frequently leave packages in a place that is not your door, write in your delivery instructions that you are immobile and they should deliver directly to your door. I live on the fifth floor of an apartment building, and after I added these instructions, packages went from being delivered 90% to my downstairs common area to 90% in front of my apartment door.
This goes without saying, but your lay-up spot should be as close to a bathroom as possible, and on the same level of your dwelling (you should not have to navigate stairs).
Do not walk to the bathroom. Save energy by using a rolling stool, like the kind seen at tattoo parlors. If your bed is the ship, consider this your rowboat.
How to urinate:
Men: use your spare water bottles, and store them underneath your bed to empty at the same time as your bowel movement outings.
Women: use a Tupperware container with a wide mouth that is deep enough not to splash or buy a female urinal (you can put an absorbent mat underneath until you get the hang of it.)
With these methods, combined with a diet that contains a lot of liquid calories (protein and meal replacement shakes, V8, etc.), you should only need to make a bathroom trip once every 2-3 days, which should save you a lot of energy.
Showers are surprisingly energy-intensive. Rid yourself of the habit of taking one. Instead, clean yourself with hospital-grade wipes (there are many brands, but this one is cheap and fine). Save your shower (with shower chair, obviously!) for a benzo or pregabalin day every 1-2 weeks.
Buy some antibacterial wipes and keep them around. Frequently wipe down your bedside table and floor.
Have a caretaker change your sheets when you're in the shower.
If you are a person with a period, period underwear (both disposable and non-disposable versions) is a lifesaver to avoid the hassle of changing out pads and tampons. You might also consider a menstrual disc. Or just put a folded up old towel underneath you if you don't have the energy to deal with it at all!
The lowest-energy way to exist is to lay on your back, body straight, arms at your sides, relaxed.
It is not a huge deal to deviate from this position somewhat to switch it up, but just keep in mind if you get into a more severe state that you will burn slightly more energy.
In general, back > sides > prone, as far as saving energy goes.
There are a couple postural tips you might want to take into account to avoid muscular pain from being in a new position:
Laptops are much harder to navigate, cognitively, than phones. Expect to be doing most of your device usage on a phone. A tablet is a happy medium.
If you're well enough to use a laptop, I recommend this laptop stand. I wish it went down just a little lower, but the angle feature is key.
If you have any screen tolerance at all, I recommend buying an e-ink phone. I have this one, a Bigme Hibreak. It's... not great, but it's a full Android phone running on e-ink. The Hisense A9 is another option.
If you can tolerate screens enough to use your real phone, the following adjustments are recommended:
If you can't tolerate screens, talking to AI through your phone is immensely helpful! Androids have Gemini built in, triggered by saying "OK, Google", and iPhones have Siri, which can integrate with ChatGPT.
Voice-to-text using a keyboard like Swiftkey is lower effort than tap-texting, especially with an e-ink phone with a low refresh rate.
This is a pacing enforcement mechanism that works better than willpower alone. Each morning you text someone your exertion plan for the day. "Other than basic needs, I will sit upright for lunch for 15 min, that's it." "I will only have 3 hours of screen time today".
If you want to do anything outside the plan, you have to text your buddy and get approval before doing it. It's all about friction: If you're texting "can I also take a shower" you have to actually justify it, which makes you think twice.
Many people with PEM notice that they start to feel better late in the evening, or after midnight. If you need to do something fatiguing, schedule it for these times.
Contrarily, many people find that they are groggy and fatigued in the morning. Use this time to rest.
Women have a hard time on their periods, typically. Plan around this. You can also try taking extra antihistamines at certain parts of their cycle to reduce histamine-primed crashing, and or the progesterone-only pill or even bioidentical progesterone. @PneumaNeura on twitter has a great writeup on this.
The more severe you are, the more you'll want total darkness: blackout curtains, tape over any LEDs, and an eye mask.
For noise: earplugs or noise-canceling headphones, and/or a white noise machine.
Your phone should be on do-not-disturb with exceptions only for true emergencies. Every notification is a cognitive interrupt.
Stage your environment for minimal reaching. Everything you might need should be at mattress level within arm's length. Use a bedside table, or just pile stuff on the bed next to you in a pinch. If it requires sitting up, reaching down, or twisting to access, relocate it before you need it.
When you start feeling better, especially if it's the first time within a crash, celebrate by doing absolutely nothing different for another 24-48 hours. The false recovery is where crashes get extended, especially early in a crash when you don't know your limits:
Your first activities after feeling better should feel small: sitting upright for 15 minutes. A 2-minute phone call. If you don't crash from that after 24 hours, add a little more.
It's also important to consider your waves throughout the day as you test new improvements. Don't test them when you're feeling bad. If you feel better after 10 PM, maybe try something out then before trying it out during the day.
Finally, don't just add random capabilities, make a progression list based on your intuition of which activities add the most happiness for you without adding too much exertion. Only if you've completed the first item on the list without crashing can you move onto the next.
A progression list might look like: sit up in bed for two minutes -> 5 minute phone call -> use laptop for 5 minutes -> look at e-ink phone screen for 15 minutes straight.
You should be doing this anyway as part of your condition, but it is even more helpful in a PEM crash when days start to run together.
Write down everything you did, timestamped, with amounts of medications taken, etc.
If you're too severe to type, open an LLM and narrate it into a chat which you can then re-use every day. Have the LLM expand and write for you. This also makes it easy to go back and say "What did I do [x] day?" or "When did I crash?"
Research shows humans in captivity do better with a routine. Wake up at the same time every day, go to sleep at the same time, check certain websites at the same time, give yourself a few square meals a day, maybe call a friend each evening if you can. It gives you something to look forward to throughout the day.
There's no easy answer to this, as, especially in our overstimulated world, laying with one's eyes closed all day is about the hardest thing to ask someone to do.
I solicited some ideas on twitter, and here's what came back:
Caretakers are most helpful for:
Some people overthink this, feeling like the caretaker needs to be a full time role. Unless you are extremely severe, it's probably only an hour and a half of work, once a week. Having someone there more often could be overkill and could even make you worse.
If you live alone, have a friend come once a week and do these tasks.
I find it helpful to take a benzodiazepine during a caretaker visit. It allows me to leave the bed and take a shower, which allows sheets to be changed, and allows for more conversation with the caretaker, which fulfills my social needs.
If you are not able to fully communicate, send a descriptive list of what you want done to your caretaker before they arrive.
If you're in a severe state, it's a good idea to set boundaries with your caretaker over text beforehand. For example, telling them that they should not touch you or speak to you unless spoken to.
Note: if you are an independent person, you will need to kill your ego around having a caretaker. I crashed multiple times doing things I should have a caretaker do because I didn't want to put more work on them. They are here to take care of you - give them the honor of doing that!
I'm Liam Rosen, and I've been fighting Long COVID / ME on and off since May 2022. I know a lot, but I'm no expert. I just believe the patient community deserves more information, so I wrote this to step up and fill a gap.
In my past life, I wrote short, practical guides like these for other subjects.
For more advice like this, follow me on Twitter.