The PEM Guide 

Created by: Adriana Patino, Lead of Long Covid Canada Collaborative group 

**DISCLAIMER**

This document is NOT intended as medical advice. It consists of notes I am sharing from my own personal experience, based on advice and courses I have received from my Long Covid and ME/CFS specialists, science-based information, who have helped me better manage my Long Covid condition. It is intended to help others who struggle with fatigue and post-exertional malaise (PEM) to better understand why it occurs and how to avoid it. It is HARD WORK, and takes discipline, but necessary and worth it!

Fatigue and worsening of symptoms from Post-exertional Malaise (PEM) and how to manage them.

For many of us suffering from Long Covid, fatigue is the most debilitating symptom. We may also have our ‘constant’ symptoms - the ones that are always there no matter what, and they may get worse with PEM.  On the rare occasion that we feel a little bit better, we try to do our regular activities–which could be as intense as going for a run/workout, doing a few hours of work, or housework, or could be as seemingly small as taking a shower or talking to a friend on the phone. Suddenly, we find ourselves bed bound again, lasting for days, if not weeks. Sometimes the reaction takes longer than that (exertion is in fact cumulative), so we are able to do any of these activities but then the week after, we either find ourselves with our symptoms worse and bad fatigue, or completely bedbound. This delayed reaction in our bodies is called Post-Exertional Malaise (PEM) and worsening of symptoms and happens between 24 and up to 72 hrs after. This can be provoked by exertion either physical, cognitive, emotional or environmental (your surroundings).

Feel free to refer to this video which quickly explains what happens at a cellular level: https://www.youtube.com/watch?v=fqCM4LkKGEE&list=TLGG_ufAhT_ohbQwMTA0MjAyNQ 

Why does this happen!?

This delayed reaction happens because we keep pushing into getting back to our normal activities, when our body and brain are not able to do it. We keep functioning outside of our Energy Envelope (EE), fatigue is cumulative and thus we are setting ourselves on a downward spiral where we are forced to do less and less until we literally can’t do anything anymore.

Think about it in terms of your body battery. Our cells have been affected at the mitochondrial level - the energy powerhouse. Meaning that our bodies can no longer produce energy as fast or efficiently as before. Now think about your body and brain function - everything takes energy to work, things that we previously didn’t even considered before but now we have to. The energy it takes to think, to take simple steps, the energy it takes for your heart to pump - We never had to considered that before because our bodies had sufficient energy, constantly generating it, pumping it, it would fuel our cells, our bodies, our brains, our lives. Only when we REALLY stretched our limits would we feel the fatigue.

But now,our batteries run out a lot faster, and do not replenish as quick so what ends up happening is we end up functioning in the red without realizing. And RED can mean not only the manifestation of fatigue, it can mean your symptoms getting worse, even new symptoms arising. Living outside our limits is not only frustrating, but it’s damaging to our baseline as it creates setbacks, and has the potential to create permanent organ damage. When you say “I went shopping, I paid for it the next day, but I was able to do it!” That is not improvement, that is your body telling you you overdid it because you still had a push back and still went into red. Improvement is when you can do something, and have ZERO symptoms/ reactions for up to 72 hrs after said activity. So what do we do!?

Take the first step into self-awareness

First and foremost, we must acknowledge we are not the same as we were before getting sick. Therefore we are not able to do all the activities we were able to before. This part alone can be the hardest to do. Accepting this reality is very difficult and it comes with grief of our old selves, our old lives, our old energy levels. You NEED to allow yourself to grieve and slowly begin to accept what reality is right now. Accept that you have limitations, it’s not your fault, and you need to help your body/mind heal. Something crucial to ALWAYS keep in mind:

“Acceptance of my new reality DOESN’T mean I’ve given up! It only means I’ve taken the stress and anxiety away to try to be who I was, and will keep working on my improvement while respecting my limitations.”

Repeat this to yourself as often as needed. Eventually you will see that letting go of trying to go back to who you used to be will take away a HUGE amount of stress and negative emotional energy (which is draining) and you will now be able to completely focus on your road forward. Our energy is quite limited, we literally can only afford to spend it on positive and constructive things that will push us forward, and we can’t afford to have any useless leaks.

Once you’ve come to terms with our reality, the second step is to develop self-awareness. For many people it can be hard as they are not used to listening to their body. HONEST self-awareness is crucial because this is the ONLY way you will know when your brain/body is pushing back, and for you to start recognizing when to stop BEFORE they reach their limit. If you don’t develop this consciousness, you will miss your body/brain’s signals and keep pushing until your body screams at you to stop (this can mean worsening of your usual symptoms, sometimes NEW symptoms, extreme fatigue, and a crash) and by then, it’ll be too late. You absolutely need to learn your body’s early signals and ideally learn to stop before you even get there. But that takes A LOT of practice, and being humble and honest with yourself.  

But…is this what Pacing means?

The goal of pacing is not only to do less, it is to do smart! Cutting down the INTENSITY of an activity is a huge energy saver, and that’s what we are trying to do. Ideally, once we master it,  we can be functional for LONGER or at the very least start to live within our EE (ie. stay in the BLACK and avoid the red) in a SUSTAINABLE way, and get out of the crash/recover cycle that affects us SO negatively.

Pacing applies to not only physical exertion, but cognitive, emotional AND environmental. These are the four areas of exertion that affect us, we must always  be mindful of them, and how they each affect our EE. I’ll review them below:

Physical: This one is the easiest and most common form of exertion. The best example is the one we used for vacuuming above. Having awareness of your physical exertion may also involve that your worsening of symptoms may not be ONLY physical, it could manifest as cognitive symptoms such as light headedness, dizziness, increase in brain fog, etc.

Cognitive: The sneakiest type, because most of the time we don’t realize we are over-exerting cognitively. It could be something as obvious as doing computer work while laying down in bed, or more sneaky like maybe watching a brand new movie with a complex storyline. It’s not only crucial to know your cognitive limitations, but tracking the intensity in this field, and having awareness of the symptoms (it may also provoke physical symptoms, like sweating, trembling, physical fatigue, etc).

Emotional: Emotional energy exertion applies to both positive AND negative emotions. Although negative emotions tend to use up quite a bit more energy than positive emotions, it’s very important to keep all our emotions in check. For example, we may get very excited over some good news we’ve received or may have had a difficult conversation with a loved one who still doesn’t understand our condition, making us feel frustrated. Both emotional reactions can potentially send us over the edge and cause PEM.  

Environmental: This is the forgotten one. Environmental exertion is basically any stimulation by our surroundings. For example, the amount of environmental exertion would be significantly less if we have coffee with a friend at home than if we have coffee with a friend inside a coffee shop where there are people constantly walking by, background noise everywhere from other conversations, different smells, etc.

Social: Although this one is not an “official” field of PEM, I really believe it’s worth mentioning. Social exertion could fall into a combination of two or more fields, and it affects us greatly too. It could be as big as being at a social gathering with lots of people, or as small as talking with a friend on the phone for a long time.

Logging is a powerful tool

Now that we know about the importance of developing self-awareness, and the four areas of exertion that affect us, let’s dive into logging our activities. Logging is the second most important tool at our disposal (next to self-awareness) because it allows us to put into paper our activities, helps us identify our EE and stay within it, thus helping us avoid PEM/crashes.

Logging can be as simple or as complex as you want to make it. The more detail you add, the better you will be able to use your log to identify patterns, discover triggers, your intensity limits, etc. But before you start searching for these clues, first you need to get used to logging your regular activities and THEN you start to modify them.

I suggest you have a dedicated notebook for this. I’ll share here my personal technique, and some pictures of how I log my days to make sure I stay in my energy envelope.

The colours I use were recommended by Dr. Ric Arseneau, internist at The University of British Columbia and Long Covid specialist, to give us a visual of how we’re doing. I modified the log to include the four main types of exertion that affect us (physical, cognitive, emotional and environmental).

The colours to use are:

Yellow = we feel at our usual baseline (even with symptoms, as long as those symptoms are at a constant)

Green = better than our baseline

Red = worse than our baseline

Black = PEM/crash.

There’s a very fine line between red and black and that’s when self-awareness comes into play. Are your symptoms just worse than usual, or are you having a crash? If it’s been longer than 24 hours, it’s usually a crash.

I’ve included numbers that I personally use like my morning score from the Visible app, and  the Body battery (BB) that I wake up to from my Garmin VenuSQ smartwatch. This helps me have a ROUGH idea of how I’m feeling and how much energy I have for the day.

I also use a colour to express how I’m feeling overall. Then, I assign a colour to each of the four areas according to how I’m feeling first thing in the morning.

During the day, I only enter whatever activity I do OUTSIDE of my norm in each category (for example: my norm being feeding my little pets; I don’t add that because it’s routine) but for those of you just starting to log, I suggest you quickly write all your activity, including duration and intensity (if you have a heart-rate tracker, this is very useful to gauge intensity).

At the end of the day, I finally enter the colour of how I’m feeling in each area (I may be yellow physically but red cognitively if it was a demanding cognitive day, for example).

The goal with this tracking is to find your energy envelope (baseline) and learn how to stay within it BEFORE you consider increasing it. So, ideally you want to see at least 2-3 weeks of ONLY yellow and green before you start to increase it.

If you notice that you have a lot of red and black, it means you have to cut back your activities, their intensity AND add more mini-breaks during the day. Remember that is not only the amount of time of an activity that affects us, it’s the INTENSITY as well.

For me, logging this way literally takes me no more than 10 minutes. 2 minutes in the morning, 2-3 during the day, and 1 at night. That’s it! And it gives you a pretty full picture of your energy and activity tolerance. You can put as much detail as you want (like adding HR during an activity) or keep it simple. Whatever works for you. But getting into this habit of logging, learning your warning signs and your tolerance, and learning how to pace to stay within your EE is a crucial way to prevent and manage your fatigue, and prevent PEM crashes.

Remember that we can’t stay in the cycle of crash/recover because it doesn’t only set us back significantly, it lowers our baseline even more, and can create permanent damage. Learning to live SUSTAINABLY within our baseline for a few weeks, will allow us to start SLOWLY to increase it, and start our recovery trend upwards instead of down.

I’ve got logging down–now what?

If you’ve been logging, it’s a good practice to count the number of red and black days you had in a month and try to reduce them. Go back to your log and determine what caused those red/black days. Was it poor pacing, over pushing yourself, stress, things that happened that were out of your control? Having a good idea of what’s negatively impacting you can only help you work on those areas and prevent them.

Let’s assume you’ve been REALLY good and the past 2-3 weeks have been all green or yellow. FANTASTIC!  NOW you can see if your body/brain is ready for a SMALL increase in activity. When I say small, I mean small. Some recommend a 10% increase, but personally, I’ve found that aggressive sometimes and usually sets me back. But it depends on the activity, so measure your tolerance, if you need to adjust to 5% but do not go over 10%.

Choose ONE activity, and try to increase it by 5%; it can be either going for a walk, increased computer time, cleaning, brain training…anything. But just ONE thing. Be conscious of ANY pushback during the increase. If day 1 you didn’t have any pushback that’s great, but see how you feel 2-3 days (WITHOUT doing that activity at all) after and see if you get any PEM or any worsening of symptoms. If you don’t get any PEM, try doing the increased activity 2-3 x a week (try leaving a rest day in between) and see what happens. If you get ANY pushback symptoms, STOP immediately, rest and then go back to the old way 2 more weeks then try again.

Remember that this is not the same as when you first start to work out and you start to build your strength and tolerance. As a former competitive swimmer, I know.

In that instance, progress is quite linear, you can get away with larger increases, and you start to see your results quite soon. Our condition is quite unpredictable, and we MUST be patient with our bodies/brains and go as slow or as fast as they’ll allow us to. Sometimes we may be able to increase more than others, which is why I prefer more modest increases that are more likely to be tolerated.

Remember that these guidelines are based on what’s been recommended for me by specialists and what has and hasn’t been working for me. When it comes to increasing activities, find your own balance and do what’s working for you, but always keep in mind NOT TO PUSH THROUGH.

Remember: If you push through, your body/brain will push back TWICE as hard and you go backwards.  So patience is KEY.

Last words of wisdom:

• It’s recommended that after you get your logging, pacing and a SUSTAINABLE EE should you try medications, supplements to help with energy, etc.many experts agree on this, hence why pacing is the first thing to practice…otherwise, nothing will work and nothing will help you if you keep living outside your limits. Get in your energy envelope,THEN try things one at a time. Your log will be a fantastic tool to measure how the new med/supplement is working, side effects etc.

• When you start to feel better, it’s likely because you are doing LESS and with less intensity. EMBRACE IT! and that’s it, don’t use nor abuse. You will have more good days like these, I PROMISE.But don’t go crazy wanting to do it all or you will go back to square one and you will wonder what happened. You abused your energy and went back into the red is what happened.  

• When doing activities, consider using energy conservation techniques. If you need to go somewhere, maybe ask for someone to drive you, while you lay down, eyes closed (no physical, cognitive or environmental stimulation). If you go to a park, maybe use a wheelchair or a cane to help you walk and take seating breaks often. Use the elevator instead of the stairs. Consider getting a Handicap permit so you can park closer, etc. Every little thing helps!

• Remember that improvement is not linear, but embrace the little victories in your day/week. Every millimetre advanced adds up to full meters! As tiny as victories may seem sometimes, they ALL count! They also keep your motivation up on the bad day and a sense of positivity. =)

• Many things are out of your control. Don’t let those things steal energy from you. Always wonder: “Is worrying about this useful? Can I do anything about this?” If the answer is no, let it go. A LOT of our cognitive energy is spent worrying and stressing about things that either we can’t change, or can’t do anything about AT THAT TIME, so not worth spending energy on them that could be used for more positive or useful things.

• FIND JOY!!! Not to indicate this condition is psychosomatic at all, however, with all this we have going on it is incredibly easy to get depressed, frustrated, and desperate. And down we go. Finding things that make us happy is not only better for our mental health, but our motivation and energy overall. Personally, I find joy in all my pets, and take a million pictures of them. On good cognitive days, I’ll listen to some music I like for a few minutes. Anything you can do that brings you joy and happiness makes it a priority.

• Don’t be afraid to ask for extra help if you need it! On rare occasions friends would ask me how they can help, it’s incredibly hard for me to ask for help, but I need to. I’d ask them to either check on me more often, include me in events (even if they know I can’t go) if they like to cook, they’d bring me food that I can freeze and reheat for a few days, etc. For many of us, it’s hard thinking about putting ourselves first, and for me personally it’s been a HARD lesson that I’m still trying to master. But we MUST put ourselves first, our health and our energy. Be extra gentle with yourself and your body. You are worthy and deserve it.

Like I said at the beginning of the guide, this takes A LOT of hard work, and A LOT of self-awareness, being humble and honest with ourselves. But in my experience, there is no magic pill, there is no magic anything. We MUST put in the work if we want to dig ourselves out of this hole, and these steps have done MAGIC for me in my improvement. And because I’ve been doing this myself and seeing how much it’s helped me, I only hope that it helps you too and you can start to see a glimpse of light in this terrible darkness.