The Balance Between Rest, PEM and Autonomic Conditioning | The Science and The Theory

I did my own version of this conditioning. Gradually increasing activity over many many months. I also limited stress and unnecessary exertion. It took a year in total but I’m now back to running and normal life. I still do prioritize sleep and pace myself. I sprinkle NSDR sessions throughout the day to keep my nervous system balanced.

My big light bulb moment when managing spoons was that mental and social activity was as fatiguing as physical activity. I manage my mix of activities much better now. I already had fibro and ME/CFS for thirty years before long Covid from early 2020. I got myself quite functional in my prior journey using diet, supplements, mindfulness and somatic yoga and that gives me hope that some kind of recovery is possible. Progress is glacial but I’ve found clinical Pilates with a physio who gets PEM a really good addition and I can now walk my dog around the lake by sitting down regularly at each park bench which coincides with when my pain spikes. It’s always fascinating to me that I can feel reasonably okay while doing something and then completely crashed out the next day. I think your theories make sense. Your videos have been a great source of information and hope. Thank you!

Thank you, Gez, for being the voice of reason and reality! Your "theory" is more grounded in the truth of my daily battle to exist than most of the "expert" recovery advice I have seen lately. FThe victory of farting around the house for 15 minutes is SO relatable!😁👍Thanks for sharing your personal stories as well as your impeccable research. I don't have words to express how much I appreciate hearing my experience validated. It gives me courage to keep trying to gently work with what I've got and maybe add a spoon or two. Thank you, thank you, thank you.

I'm group 1. I went far too quick in the beginning, had no clue about the journey I had before me and by pushing too hard I ended up house bound. Accepting this is not linier and tuning into my body has helped me the most. Now I am currently averaging 7000 steps a day and have had a solid baseline for a month. During my baseline, rather than increase I just remain with what's working, allowing my body to feel good for as long as possible. Then make macro adjustments when it feels right. (I write this on a flair up day so there's still plenty of work to be done.) Thanks for the fab video, Gez.

Gez, you should recieve an award for your educational work! 👑 Group I with ME/CFS diagnosis here. My constant trigger is paperwork which I have to do because of my condition to get medical and financial support, appointments and figure out my future (because I'm unable to work). It stresses my out and leads to crashes. Hoping to get help in my household soon, because I have way to less spoons to manage my daily basics.

Oh man, thank you so much!!!! This is a nightmare, but knowing I am not alone in this thing, is the only thing that keeps me from not completely losing it.

This is precisely where I'm stuck. The winter involves mild activity, then arrives spring and working outside and pacing goes out the window if I want to complete a task. Energy envelope blown. My PEM signifier is severe chest pain, so hard to ignore! You describe the confusion so well. People don't get how some days I can't walk across the room without getting the chest pain, dizziness. Thank you for all the examples of activities that can calm the nervous system, even the ones that don't amount to exercise.

I've had LC since my initial infection in March 2020 - periods of not being able to get out of bed, using walking sticks thanks to inflamed painful joints, debilitating brain fog etc etc - and I've been able to increase my activity extremally slowly over the years using the method described here of trying to do the tiniest amount more, waiting a few days to see if it triggered any symptoms, and then trying a bit more again a week or so later. This April I was able to jog/walk the London Marathon and, while it triggered somewhat of a relapse (reactive arthritis), I didn't get the debilitating PEM I used to. I know everyone's recovery is different but I think there is reason to hope that you might be able to get back to your old activity levels again, as long as you are patient and listen to your body at every step. I used to be an ultramarathon runner so I'm hoping to one day do those kind of events again. Lot of love to everyone who's surviving with this shitty, unfair illness - you're all doing amazingly 🥰

Clear theory and brilliantly explained. I am in awe you can keep crafting these ideas and explanations through the brain fog. Original wave, group 1, super cool club member too. You have addressed so many of the questions I had on PEM. Thank you for putting all this together to help us, you have saved us thousands of spoons collectively. Wish we could gift you spoons.

LC since April 2020, in a wheelchair since. I fall into both groups depending on the nature of the effort causing the PEM (or PESE). I get immediate PEM in the form of awful headaches, photophobia and tingling from cognitive effort and delayed PEM from physical effort. What I found most troubling is that I tried twice to undertake a very soft conditioning process doing exercises in the pool with the supervision of a physio; first time in 2021 and then in 2022. Over a few months I improved and I was able to do a bit more without crashing badly. Pots was also under control, or so I thought, but the neuropathic pains weren't. A few months later I had a big crash which made me bedbound again for months and gave me new or worsening symptoms. Also only then did I realise that while I was conditioning my body, my brain had given up on me and the brain fog was out of control. Soon after I was forced to stop the hydrotherapy the brain fog lifted. I've since learned that I need to focus on passive movement, in the form of massage, and on breathing - fingers crossed that after a few years of this I see some progress! 🤞

Excellent descriptions of the different types of post exertional symptoms. It's so hard to fight the desire to get out there. To think, maybe it's all in your head. And then you crash and remember that you need to schedule rest.

I came to similar conclusion myself. Sadly increasing the threshold takes forever and is easily ruined by a reinfection or stress induced crashes.

No graded exercise, no schedule, no regime, no stress. After a bit of a recovery two years in and on the NHS schedule, I relapsed so bad. Took another year to work out that a bit of a swim on a good day I didn’t go PEM after, also box breathing was useful, Qigong most useful when I could. I finally got to place where can play an hours tennis this afternoon and I reckon I’ll be still good to swim out into a few gentle Atlantic rollers this coming weekend. Tomorrow is a rest day and the next day I’ll expect that I can do my Qigong with meditation- the short version. Whatever… I can cold bath and sit in the hot tub followed by a nanna nap if not. Probably never gonna do five hour county tennis matches, or spend half a day surfing double overhead beach breaks like my old self, but I am able to do little bits of these things that I love with great reward. Look forward to your further examination of this personalised pacing progress Gez

So accurate again Gez. Thank you for your generosity and all your work despite your condition.✨

Great timing. In early May I thought I had really turned a corner with this. My energy was good, I was able to up my steps per to over 10,000 plus. Really thought I had found the cure as I had started taking Nattokinase and doing lymphatic drainage therapy. But of course it all came crashing down after two weeks. Too much, too quick. I’m definitely in category one. Great video Getz. Look forward to the next.

Just as frustration was gaining points you have provided clarity and I know my version of conditioning it making sense - thank you for not going away and giving so much of your own energy in sharing your experience. Bloody brilliant Gez!

Hi Gez.. literally got to a point of back to normality , Running, weight lifting and full excercise routing , just to get a mild flu and literally 3 weeks ago Heart palpitations , tiredness, Fatigue etc etc back to where I was 2 years ago .. really is a nasty and crazy experience this Long Covid. 😢

I hate having long covid so much. I'm sorry. I'm only 31 and I have worked so hard for my studies. Just for graduating covid damaged my balance organ and I almost missed out on graduating. I have been at home for one year, trying to overcome my PEM and dizzyness. I became more active the last months and BOOm I have been in bed for a whole week already. Not able to do more. It's just very depressing. Thank you for the video, I try to become more positive. But sometimes I feel like fighting an invisible monster and people in my environment seem to lose patience with me. Also I cant pay my bills by myself. 😪 Before this I allready had chronic illnesses making my life difficult. So I guess I was vulnerable before. I also live in a small student flat and it's constant noise arround me. It's just too much. I'm going to watch your videos and try to educate myself. 💖

I now consider myself in group 2, I can do the majority of day to day tasks again without drama. Even managed a few 10 mile plus cycle rides this year on my ebike. I'm still pacing though, too frightened of a PEM crash. One thing I developed was tinnitus about 18months ago. Another thing to overcome :( As always Gez, thanks for posting these vids up.

I’ve had “group 1” long Covid since Dec 2020. As a personal trainer and self proclaimed gym rat it’s been quite the roller coaster. While I was listening, controlling your HR as it rises, would work well with weightlifting. You can always shorten rep ranges and rest between sets as long as you need. That’s what I find has been working for me, although much shorter over all lol. I also haven’t gotten my sense of smell and taste back😢🙏🏼🤞