The Balance Between Rest, PEM and Autonomic Conditioning | The Science and The Theory
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- Опубліковано 7 чер 2024
- If we’re recovering, or at least wanting to recover - how do we go about trying to ‘do more’ without triggering relapse, or worsening symptoms?
What exactly is PEM, and do all long haulers suffer from it?
And what role is there for autonomic conditioning in all of this?
In this video I try to answer all of these questions, using both published science and some theorising of my own.
CONTENTS:
0:00 Introduction
1:30 The Two Types of LC
5:54 What is PEM?
8:14 Autonomic Conditioning
11:29 My Experience
14:22 Summary
RESOURCES:
Canadian Criteria for ME/CFS:
me-pedia.org/wiki/Canadian_Co...
Nature Comms: Two Types of Long Hauler (paraphrasing!):
www.nature.com/articles/s4146...
Mt Sinai Recovery Plan for Long Covid (with Dr David Putrino):
• The Mt Sinai Recovery ...
Polyvagal Theory (With Dr Sally Riggs):
• Five Psychological Str...
Great presentation from Prof. Perikles Simon on exercise intolerance in LC (starts at 47 mins):
vimeo.com/771944349?ref=tw-v-...
The 'Right Kind of Dysautonomia' clarification:
If you have POTS you may benefit from a different kind of autonomic conditioning (eg reclining exercises) than if you have headaches and GI issues (which may benefit from breathwork/meditation). But this isn't a hard edged science!
Watch my second channel! It's called Flip the Script and it's great:
/ acheronfilmsuk - Наука та технологія
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!
Glad you have found a solution for walking your dog. What breed, size dog do you have. I want a dog but hesitate to add that to my life. Best to you.
Ah, I hope you continue to improve. Do you mind sharing which diet helped you previously?
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.
This is fantastic news :)
Congratulations on your recovery! Do you avoid caffeine?
@@justritasimi i did during recovery. I am now able to drink it again
@@Turningmylifegreen that's good to know ..I had to quit caffeine during recovery and still never drank it again out of fear that it will make me feel unwell ( I'm a former coffee lover)..quitting it was tough with the withdrawal headaches and fatigue . Good to know you were eventually able to add it back !
It's taken me almost three, buuuut I still can't do zumba, my nursing job, and nowhere near normal life but I'm learning that I may not be called to that. I needed blood filtering, and a WHOLE lot of other interventions, medications, mold remediation, etc...but good to hear and thank God! Acupuncture has been helpful too. I had a huge and heavy, high load from march 2020 and got it a few times before the march one which took me down and out.
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.
I’m early days (& hoping not to fulfil LC criteria!), but I really resonate to the first bit of what you’ve said. I’ve learnt that lesson too now :-( thanks for sharing !
Best of luck with your recovery!
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.
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.
That’s so kind of you - thank you Nancy!
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.
It’s a nightmare; but you’re not alone.
I agree.
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.
So true..😢
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 🥰
Great comment....you helped us much! I appreciate it ❤ March 2020 is my date also.
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.
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.
Thank you Ailsa!
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! 🤞
I'm in the same boat as you. Don't feel alone. 🖤
✨️Best Wishes! ✨️
@@PollyHistor I am sorry, it isn't easy but yes as you say there are so many people dealing with this. Fingers crossed for effective treatments xx
Gosh this sounds awful Francesca. Wishing you the absolute best in getting on top of it and seeing some incremental improvements!
Same I get both immediate and then if don't listen crash, flare, etc
@@RUNDMC1 Thanks Gez, for your continued fantastic work researching and informing our LC community 🙂💙
So accurate again Gez. Thank you for your generosity and all your work despite your condition.✨
I came to similar conclusion myself. Sadly increasing the threshold takes forever and is easily ruined by a reinfection or stress induced crashes.
Completely! I would probably near recovered if I didn't have to work and received a supplemental income. No doubt most people would.
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!
Thank you!
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.
Take it easy in ramping everything up!
Lots of sun light white and green Kratom helped me
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 glad you can surf a bit Ian! It’s like skiing for me - keeps me sane :)
@@RUNDMC1 Exactly, a healthy mind must surely be good for the body too. It was an old surfing buddy, he suffered CFS/ME for seven years, who told me that he found there were certain ‘good exertion’ and ‘bad exertion’ for him. Surfing was good, jogging bad.
I’m going to the climbing wall Tuesday next week for a little tester, was my biggest passion. I’m just recovering from a 7wk crash, symptom free some days again now. How lovely to do a little of what you loved. May it continue!
@@nickywellman594 All the best with your climb Nicky, I think being able to reclaim little bits of our old self to be highly beneficial to our wellbeing
We need to be studying those that have PEM disappear completely and see what the mechanism in people who improve is versus people who don't improve (who do the same things). Theres got to be a reason some of us get locked in with PEM always ready to punish, versus those that it magically lifts.
The problem s many people who do recover are sure its because of what they did. Like I saw a person who said they went vegan who attributes that to their recovery, another who drank lots of milk, another who just changed their thoughts, But other people have tried those exact same things and sadly it didn't help. So we know theres more to it than a treatment that coincidently someone started. I think many were healing naturally. So of course when they noticed PEM had disappeared they are now positive that last thing they did was the answer.
However all that said, I do think pacing has the best success rate of management treatments. As if we stop reminding the immune system to attack us for cellular exertion long enough, then maybe it forgets the mistake it was making?
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. 💖
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've been there. So unfair. I found it was much easier to 'gain back ground' the second time - taking weeks rather than years. I really hope it's the same for you! Good luck!
Go SO easy in your recovery now. Don’t push it!
@@RUNDMC1 Thanks Gez I appreciate all that you doing for us..
Thank you Gez - Timely as ever. LC since Jan 2021 here. After months of living within my energy levels and easing myself slowly but regularly into steady gains, today I needed to rest midday while listening to my 963 Hz Miracle Tones playlist once again to calm my nervous system. Your theory of spending more ATP than the body is capable of replacing rings so absolutely true to my experiences. A big YES to inflammation . I experience 'warning signals' the day after I have eaten poorly or have had alcohol. On "ischaemic oxygen reperfusion injury" - not quite sure I understand, but if related, I do sense my/our symptoms have been/now something to do with damaged/impaired blood vessels. Continuously striving to provide my body the best possible support to heal, including the all-important mitigating of stress (internal & external).
So very grateful for all your work. It's helped me tremendously over these past 2+ years. I have come back to a good life - not exactly the one I had, but a good one.
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.
Your videos are so important to me, thank you for helping so many of us understand what our systems are doing. I receive hope and a sense of community here. Sometimes I just need reminders and find it here, as well as new info.
Oh man Gez. The improved autonomic control without spoon count increase problem is my life right now, and you put words to it so well. Thank you! It’s been driving me mad.
gez!! can we get a video about Temelimab or BC 007? And if you do, can you explain what the best ways are to advocate for fast-track approval in our countries?
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😢🙏🏼🤞
You have an amazing way of explaining things in a clear way. Thanks again Gez.
Thanks Paddy!
I got a lot out of pacing with a HR monitor that measures HRV (makes it easy to know when you're resting and when you're in sympathetic nervous system). When I started I immediately saw how much I was overdoing it
How do you use hrv as a guide?
@@davidford8539 not allowed to link to anywhere in comments but accidentally linked! If it gets deleted let me know haha will reply again 😅
@@davidford8539 you better Google this or ask in me/cfs spaces (basically hrv is a useful indicator of fight flight/rest digest, has been very useful for me to pace)
Loved the intro. Gez TOTALLY gets it. He's been through the 'school of hard knocks.'
Haha, thanks Barbara!
I've had long covid ME/CFS and POTS for almost 3 years and I've been watching your videos for potentially that long? Not sure haha, but awhile. Thank you a thousand times for the research, interviews and your personal trials and tribulations. I have made progress over the years but it is very slow. Attempted pilates the same week my part time work schedule changed - bad idea. Back to focusing on breathing exercises and gentle yoga first. As a former marathon runner, I'm keen to just jump back in, but alas, we have to learn to listen to our bodies and then actually DO what they're telling us to! Thanks again for being such an informative voice of reason. (Also huge LOL to your blue gobstopper comment. Yes, let's all be 12 for a bit, it's fun!) Thanks!
Thank you very much for this analysis, Gez. I'm still not entirely sure into which group I fall, but I think it might be the second. We recently took a trip to Sardinia which included a transportation mishap in Rome (despite our best efforts at careful planning) where we had to literally sprint across town with heavy luggage in order to make it in time for our next flight. I thought I would be wasted beyond repair after that extraordinary effort, but despite struggling with hay fever which turned into a full blown cold, my LC symptoms were mostly better by a degree of two while we were in Sardinia (for family obligations - otherwise I wouldn't even have attempted the arduous journey from Cape Town). I'm back at home and back to my usual symptoms. My theory now is that something over here is keeping my body in a constant state of inflammation. I suspect EMFs, possible pesticide exposure, exhaust fumes - all of the things that were far less prevalent in Sardinia. Or perhaps it's just everyday stress. Who knows. I've had so many theories over the last three years!
Your patterns of behaviour and stress levels may also be very different at home!
I’ve been group 2 with the chest pain, heart rhythm and immediate exercise walls and SOB… but also the PEM with massive fatigue, headache, and sore throat. It’s not one or the other. But I have gotten better over the last few years with medications, although I’ve had setbacks for repeated infections and vaccines. I can do seated work for 6 hours in a row now… or walk for many walks on flat ground. Early on it was a struggle just to get to the toilet or get a glass of water. Big improvement, but no sports yet.
Also impressed you did altitude. I still can’t handle much altitude. Definitely some oxygen processing, cellular respiration difficulties going on for me, although it’s improved with time.
I’ve had autoimmune arthritis since a bout of flu in 2012 and only just catching up with the concept of PEM. I definitely get PEM and I think more frequently during “flares”. Over time I’ve found that taking NSAIDs (which I often take to help control arthritis pain) reduces the length and severity of the PEM symptoms. That would fit the hypothesis that inflammation plays a significant role in PEM.
Yup I am group one and back in bed this week after some major brain exhaustion! Comforting to see this today. Thanks as always Gez for your dedication and insights! ☺️
(Ps, loves a gobstopper 😂)
You nailed it, Gez! Your explanation increases my awareness of my "bouyancy line" in my compassionate attempt to stay fit and healthy. By the way, your Long Covid notebook is a "must have", well written guide.
Thank you!
Thank you so much. Hope one day all doctors know that and help people.
I was predominantly group 1 initially, and had a wild sympathetic response. This has calmed down. I rested very, very hard to nearly eliminate PEM.
It took a year and a lot of gentle gradual autonomic exposure, including cold showers (critically, you must keep concentrated but relaxed and allow the cold sensations), to allow me to climb 3 floors without wild tachy.
The most vertical I've done in a walk since I fell ill is now 150m (50 mins), with zero autonomic craziness or *group 1* PEM.
After what i think was reinfection in Oct my PEM is more immediate, and obviously vascular. I would say group 2. I think fundamentally it is ischemia-reperfusion injury.
I have POTS. Movement is so important, but too much causes chest pain and worsening of pain in periphery.
Unfortunately, my ability think for any length of time is very dependent on posture and even in the best case I can only give it the gas (math, software engineering, multiway convos, being witty) for a few minutes wothout a long cool down. This is also PEM, but group 2.
I very much think we need to expand our vocabulary around PEM. Interesting video Gez!
Absolutely spot on - I love being part of this community and feeling 'normal ' here . Most of my symptoms are cerebral and GI . I begin to fade instantly in stressful situations and I haven't done any training for years now - i think thoughs days are well and truly behind me. Thank you just never seems to convey my gratitude 🙏 but i am truly grateful for your podcasts and bringing us all together with our kaleidoscope of symptoms and experiences 🙏
I’m with you there on the stressful situations Dee!
@@RUNDMC1 It's so bizarre isn't it - I was in the police for just shy of 10yrs - I was dealing with stressful situations every day - Now I'm the total opposite - even a strongly worded letter or Email puts me into a tail spin. I'm sure the Dr's just think I'm a neurotic old woman by now 🙄 ( I'm 61 yrs young ) Like everyone else on here I think we're so very courageous- we keep going everyday not knowing what to expect or how it will affect us - we're all fighters 💪in our individual battles with LC . I think you're amazing Gez - The hours you put in, the research, the professionals you seek out - doing all this whilst coping with LC and you've managed to get a book out there too ( my LC Bible I have to say) - you're an inspiration to us all 👏👏👏👏👏 🙏Namaste
This is actually the first time I'm really grasping a difference between PEM and Post-Exertional Symptom Exacerbation.
Even Wikipedia doesn't know a difference between the two, yet.
So, just to summarize:
- Everybody's symptoms deteriorate with exercise/overdoing to return to a lower baseline for months - Starting point unclear but maybe similar to...
- PEM is an additional layer of severity that also occurs in a 24-72 hour window, but goes away within hours or days.
Is this correct? Because I'm sure 90% of people are not aware of this.
PS: Thank you so much for your videos. They show us that there are actual people behind the often so hard-to-grasp research. People who care and who are working on this.
Thank you. This is absolutely invaluable information!
Definitely in the first group. Almost 3 years out from covid and I’m finally trying to get back into cycling. I overdid it my second time out, and then could barely leave the couch for two days! Now my goal is to bicycle twice a week, and I pick days where I feel good. I also try not to push into higher gears or for more distance. I keep a keen eye on landmarks, the time, and my heart rate while I’m out. I also building in rest directly afterwards. It’s great, I can go out and do something I enjoy, I just have to be very mindful while I’m doing it.
And honestly, none of this would be possible if I were still working a full-time job. Long covid plus some other circumstances led me to quitting last year, and it’s been the best for my health.
Great to hear you’re back on the bike :)
Skiing sounds great Ges can’t think of anything more uplifting. I don’t really have any PEM. Pain & inflammation yes. Battled loss of function in legs (vascular/nerve issues), severe depression, insomnia, some dysautonomia, eyesight issues, tinnitus, terrible circulation. I suspect it’s tissue damage & autoimmune.
That was fascinating… Thanks Gez! I caught about 40%… I’ll have to watch a few more times when I’m not so foggy😵💫😂
This is truly some of you best work Gez thank you
Thank you!
Did you see Avi Nath’s talk today on LC? It’s on NIH videocast. With my jab injury I had to rest, rest, rest and when slightly better I started walking. Short strolls at first. Now I’m up to 30 minutes of slow walk. I still rest a lot. IVIg, statins, low dose naltrexone, sometimes salt tablets, diaphragmatic breathing, plenty of sleep and a low fiber diet have helped. I still have executive function issues however.
Brilliantly explained. I learn from you in the field of my Hashimoto symptoms which worsened after Covid. Thank you :)
Thanks Gez this is excellent looking forward to the next part!
I listened again and again- your story is so relatable and I’m so thankful for you!!!!!!!!!!!! Bless you Gez!
Thank you!
So thankful for all of your research!
I went a year without a re-lapse until a couple of days ago. Brain fog came back some fatigue and neuropathy. I don’t think I was physical work but a lot of stress. I guess I haven’t recovered like I thought I did
Take it easy!
Hi Gez, I have been following you for sometime now. I am so thankful you have the energy to help the rest of us dealing with this condition. It truly is trial and error for me. I did a group session at Michigan Medicine (UofM) and it was really helpful. I had my worst crash recently that I’m just pulling out of. I knew I had pushed it. I had Covid in Nov 2020 and got to the point of 70-80% then the 4th vaccine did me in Oct 2022 and I have yet to get as far this time. Thanks again for all you do 😊❤️.
Thank you Jackie!
I second what you have explained here, and I would like to add an observation of my own as an additional cause of PEM. I have noticed that if I'm sedentary for a while (as in weeks) due to illness or overdoing it, when I get moving again (short light walk, or stretches/light yoga) or get osteopathy or massage treatment I'm hit with PEM either later that day or the next up to two days. I have to sleep it off and take headache pills. If I rest through it and when it passes after a few days I try again with light movement I get less PEM, and after about 3 sessions of movement it's gone and if I keep out of being very sedentary this type of PEM doesn't return. Of course, that's easier said than done, as illness is a chronic problem, and it's too easy to over exert oneself and get other forms of PEM. What I notice is that the types of activities that trigger this type of PEM all involve getting the lymph system moving! It's like I moved too much waste to the processing plant in one hit and the system freaks out!
Thank you!
So very very helpful, Gez. Thanks again.
Thanks Anna!
Thank you so much for this amazing resource!
A pleasure
SPOT ON, Gez! I was part of group 1 in the beginning. Then pretty much ended up being group 2 after about 12 months or so. I'm DEFINITELY better than I was...but still nowhere near my pre covid levels. I'm still hopeful that I'll continue to slowly improve and in the meantime, maybe a new drug or something can be figured out for a lot of us. As always, thank you for your videos. They are very very very ( did I mention very? ) important to us. Take care of yourself. Thank you, again, pal!
Very kind of you - thank you! Very glad to hear you’re doing better 👍
This is brilliant and describes my journey exactly. I was probably in group 1 for the first 18 months but migrated into group 2 around two years in using probably a combination of natural recovery and your “re-programming” techniques. Now moving towards 3 years in but in last quarter was advised by GP to start taking blood pressure tablets and statins as at 56 I’d had slightly high blood pressure and cholesterol for some time, even before covid. On taking these I’ve also see a significant improvement in restoration of heart rate and reduced vascular inflammation which was one of my main systems linked to PEM. Could argue that the issue was not LC related but covid definitely added to it along with autonomic issues. Hoping the journey will continue to improve and now feel about 90% of original self. Thank you Gez for keeping me going and having some understanding and method to my recovery over the last 3 years ❤
Great to hear you’re doing better Steve!
Finally someone who speaks my language. The spoons analogy is perfect. I've had Chronic Fatigue since the mid 1980s following a very bad undiagnosed virus. Slowly, I got so I could work daily, and go out to events on weekends and also did aerobic dance. I've wondered how, in the midst of chronic CFS, I was once able to be a Zumbaholic? I could exercise like crazy twice per week, and not suffer any consequences. After my local gym shut down and pandemic started, I quit that kind, or any other exercise, until I tried a Zumba class a couple of weeks ago. I paid for it by three or four days of being hammered by CFS symptoms. How could I do strenuous exercise like that? My answer is that it made me happy. The happiness must have caused some recovery for that time.
Great video! Group 1. I’ve increased my farting around longer too (small wins for us yah!) but second get dizzy or short of breathe that’s my cue to stop and sit or lie down. I always know PEM is coming back when “coat hanger lactic acid” muscle pain feeling starts. It was constant the first yr. It’s my number one clue that overdid it and PEM is on its way. Your skiing has inspired me to try some easy green runs next season with plenty of rest and HR monitor. Nothing like a bluebird day ⛷️❄️
Best of luck to you Tina! And that balance between over-vigilance and correct vigilance over PEM symptoms is so hard isn’t it?
@@RUNDMC1 thx Gez! Best of luck to you too! And yes it sure is a delicate balancing act. Been 20 months now so I’m better at preventing the push/crash and these informative videos sure help!
Thank you Gez. I appreciate you!!!
once again Gez, you reiterate my LC. Wish I could swing some skiing, but walking works for me. Grateful to be back at work, managing stress with using a Sensate device, Red Light and Stasis breathwork. Tried to push with a brief light jog and got rewarded with headaches and a day of PEM. Better than 2 years ago, but still not 100%.
Take it easy Lisa!
I'm new to these theorys, and am grateful to feel validation for whats been happening to me for the last 2 years, this helps me feel less insane. Mental health and cognitive function have been difficult. I'm struggling to learn from these videos, understanding is difficult. I'm wondering if anyone in the USA has found any help with caregivers/providers who can help you figure all this out? I'm in south east Michigan, near the Ohio border?
I hope you continue to improve, and will be praying that you do.
I used to be able to go on a 25km walk/jog, fast walking up a mountain for 2 hours, jogging for 2 hours on a flat trail, and a 1 hour jog down hill. My health crashed in March 2023, and the next summer when I tried doing a run, it took 20 minutes longer to get up to the top, and I was too dizzy to jog or fast walk on the flat section, I just had to slow walk. It's cruel having this illness, because I am used to running things off, but that just doesn't work. Other than cognitive impairment, I have not had any physical symptoms in a while, but last month I had a crash after trying the keto diet, and it's been on/off for the last month. Can't have more than two coffees in a day. The end of the day a headache, with an internal feeling of fever and muscle cramps. 12 hours after a long walk and I turn white.
I find it useful to not try to go to bed until I actually feel sleepy, attempting to go to bed early when I am only weakened just gives me a worse sleep. In the morning I stretch arching my back upwards, which raises my heart rate uncomfortably immediately after, but then it cools back down. I guess this is autonomic conditioning.
There’s a very good explanation on mitochondrial energy use (and depletion/can’t renew fast enough) in the book Decode Your Fatigue, by Alex Howard.
Think I am in both groups sadly. Did you ever go to a long covid clinic and if so did it help? So appreciate all the help you are are giving us despite being a fellow sufferer. Thanks Gez
No, I’ve not been to an LC clinic
Great video, thank you!
Any time!
Interesting, I’m a long hauler from July 2020, I usually experience PEM instantly, chest pains, shortness of breath, tachycardia, then this sets off anxiety and panicky feelings, I always thought this was ME/CFS seeing how I can only manage about 3000 steps daily, which I’ve improved from previously 1500 last year average.
Those are the symptoms of POTS (Postural Tachycardia Syndrome). I thought I had that because a lot of long haulers do. But now I'm not sure.
Holy crap as soon as you described the headache behind the eyes/sinus I was sure this is what I've got
Amazing ❤ spot on.. I’m in the same category as you 🤦🏻♀️ and totally agree with same amount of spoons but can do more in longer periods 👍🏻 so hard isn’t it 🤷🏻♀️
How are you feeling now @Gez? I find tracking my HR doesn't make the blindest bit of difference, I'm in group 1 btw (actually, on thinking about it and re-familiarising myself with the Canadian criteria I fall into both, sorta. No chest pain and such but immediate fatigue and muscle weakness and fatigue, yes. Then I get hit by the next several days until I can recover). I can be below 90 and have PEM for several days.
@gez . You are the best. Thank you for this content. Please do a video on Liw Dose Neltrexone. It has been a game changer for me and has drastically reduced symptoms while improving quality of life. 2.5 years of this and LDN has nearly recovered me!
What dosage do you take? I started but not sure about it yet. I can’t take at night l
I lay awake. Afternoon works best.
Great to hear you’ve done so well on LDN!
1mg to start and worked up to 4.5mg. Took about 2-3 months to really see results but started feeling better in a few weeks.
@@bradsorgen3151 thanks. I’m still trying out the .5 for a month now. So guess stay on it since it takes a while.
I just started squats. First day 25 and couldnt walk for two days.
Now doing em daily just hit 40
Hi Gez, such great information. I want to share about what helped me the most, was gettting a "frequency balance" for mold. It's an "out there" treatment, kind of "woowoo" I guess, but after 3 years of unrelenting long covid symptoms, regardless of trying everything and spending so much time and money and misery, I got so much energy back (after one treatment). The improvement has sustained - 5 months so far. I was also given energy patches to stick on acupuncture points on my feet. Very helpful. Also a probiotic (Flora Syntropy by Physica EnergeticsI have no financial interest, just sharing) that finally worked to correct a terrible bowel condition, due to LC, of 1 1/2 year duration, in 3 days. (Note- what helped as well, to some degree, was to eliminate mast cell activators, like histamine- containing or -releasing foods and products.) Frequency balancing is a mystery to me, I have no idea why it works but I dont care. I have much of my life back, I just don't care. The practitioner provided laser acupuncture as well as frequency balancing. Her specialty is getting rid of allergies, so removing mold sensitivity makes sense. Additionally, I can even walk past the perfume section in pharmacies without feeling ill.
So glad to hear you’re doing better Lucy!
Excellent, thank you. I have ME/CFS, not long covid, but it is SO similar. I liked the way you described fatigue, my worst symptom. I was wondering how you coped with the plane journey to the Alps? I find standing in a queue for just a few minutes exhausting and airports are busy noisy tiring places.
There are degrees to this condition. I personally have flown about a dozen times over the past year. Traveling comes with movement and hence symptom exacerbation, but it has helped me pick up the medicines I needed, among others. Your comment reminds me that I should be grateful for how relatively well I’m doing.
I coped with the plane journey by driving out there instead. Took two days to do it instead of the normal one, and then needed two rest days once I got out there.
Please consider requesting an airport wheelchair which preserves your energy. They quickly guide you through the lines, take you to the Gate, etc. It makes a huge difference in preserving your energy and stress levels.
I have recently found a new product that I use to manage noisy environments: Loop earplugs. I have the Quiet for when I want strong noise reduction and the Engage for milder noise reduction but the ability to hear your companion at lunch! They are comfortable to wear, look discreet, reusable and pack away into a small clamshell case that easily fits into a pocket.
Just started a 10 day water fast, will report back on findings
When I was at school of nursing, I nursed a young person who had Sickle Cell Disease. He was brought into hospital when he was going through a sickle cell crisis, and I call what I experience after I go over my limit of physical activity long covid crisis. It is horrible.
I am a world away from my long covid symptoms of 2 years ago (so many) but can’t break the walking issue. I can manage a 1 mile walk or more but then legs feel like there’s nothing left. If I’m stretching and small weights 6-8kg exercising for 1-2 hours at home I seem fine.
How does one get improvement in mitochondrial function ?
Long covid clinic and gradual pacing does not reflect real life work patterns and found it disappointing. This is the first video I’ve seen where a lot of issues have made sense. Thank you.
ive had me/cfs for 20 years and listening to you is amazing as you seem to have a grasp on whats happening. But i seem to have both of these except the chest pain, nervous system crashes i get as well and physical. is this possible ?
I seem to fall into group 1 and 2. I get immediate and delayed PEM plus pulsatile tinnitus, etc.
I am the same. I get immediate PEM from cognitive effort and delayed PEM from physical effort
In addition to your dedication and hard work (that we greatly appreciate), I bet you have a wicked sense of humour. Am I right?
Well I tone it down for this channel as it’s not always appropriate!
THANK YOU!! Very helpful.
About the resting you did after your day on the mountain: what does this look like? Are you laying in bed doing nothing all rest of the day, still doing some things like reading (for enjoyment not work) or watching TV or something? Or something else?
Curious, as I find it really hard to find the 'pem avoiding' balance.
I could tolerate PlayStation and TV but not reading!
Thank you Gez. How are you doing now? Last time I heard from you, you had decided to take a break to try and focus on your recovery.
I talk about it explicitly in this film!
Group 1 OG like you my friend :) Great video as always! Have you tried Benfotiamine 300mg for Dysautonomia symptoms? It helped me so much that I no longer needed to wear compression socks.
Haven’t tried that yet!
As usual your right on the money. My symptoms and experiences (cause and effect) mirror yours exactly. Have you found anything that that helps extend your "spoons" ?
Counter intuitively - rest!
Thanks Gez for another great video! Is there a bio marker for inflammation? Couldn't we get a before n after exercise measurement and see if there is an increase in inflammation?
Yes there are bio markers for inflammation but not ones that your GP can test you for! Quite a lot of research looking at this at the moment
The Medinger 2 Group Theory of PCS/ME/CFS/PEM ...sounds very credible and eloquently explained and presented ( as usual ! ) Wow! So, being Group 1 you're not ready to come out and party, yet ?!😄
One day…!!
@@RUNDMC1 🤣
I feel I am both in group 1 and 2, with less PEM lately and more POTS , with GI symptoms. Wonder if this is a thing for other people ?
The blue gobstopper! LOL
Great explanation and differentiation.
Curious…did you happen to have a brain MRI showing white matter lesions? After the headaches hit me hard in 2020 and 2021 I finally had an MRI and they found the lesions. They ended up ruling out MS and just saying the headaches caused the lesions or the lesions caused the headaches. Wondering if the lesions are common for those with ME/CFS and ME/CFS-like LC.
I also had an MRI in April 2020 before it was accepted that long covid was happening and that people were experiencing brain fog as a symptom. We were concerned that I had a brain tumor.
My MRI results showed I also had white lesions that the Neurologist at University of Washington explained away as resulting from 2 migraines I had back in the 1990’s.
I’ve not had a brain MRI yet
PEM can also be caused by emotional and social exertions, too.
Absolutely. They cost energy!
@@RUNDMC1 For my husband who has PASC and ME/CFS, it's easier for him to walk ten thousand steps than to socialize for an hour. It's hard for loved ones to understand.
Yeah, I had my mother die 😢 and noticed the emotional exertion, possibly lots of cortisol and adrenaline stress hormones being released and of course repetitive thinking (trying to understand it) wiped me out and triggered prolonged PEM that lasted three months.
Then my partner cheated on me, however the good news is I did an experiment (after l read a study that if you are grieving and need to cry, just cry for one minute and stop). As that still releases the stress but doesn’t cause a buildup of too much mental and emotional exertion.
Crying for prolonged periods doesn’t actually heal a person any faster during grief, in fact it may actually prolong it in many people.
The study said if you reduce each cry to a maximum of 1 minute you still get the same benefit as to 5 to 15 minutes
So with the cheating and it been a major grief issue, I decided to try the ‘one minute cry’ each time I had to blubb, and it worked, I felt emotionally better faster, plus I didn’t get PEM.
So you can actually pace out your ‘cries’ while grieving and still come out the other side of grief quite well, mentally stronger knowing I can manage grief and avoid triggering PEM
💪😎👍
@@brobinson8614 wow B - you have had such a rough ride. I’m so sorry :(
@@RUNDMC1 Thanks Gez, To be honest I think I'm going to grieve more when either of my two little dogs pass away as they are ageing. They have lay beside me during this disease, slept massive hours. Luckily I have just enough energy to drive around the block to a nature park they love, and I let them run free... while I lie on the grass.
Oddly I spent so much time with them I realised their wee lives are as important to them as my life is important to me.
So I know that up coming grief will be strong. But at least I now know I can pace out grief.
It's not right though that grief and crying can trigger PEM. People are surprised to hear that. Its a tragedy in itself
Maybe you could do a video on "how to pace when dealing with grief"? Because it's eventually going to come to most of us while we are still sick, and people need to be prepared.
Some people are grieving the loss of their former life too.
I'll try find that study on shortening periods of crying
Thank you for another awesome video! I keep seeing people putting long haulers in a single bag, whereas I think we're mixing different things. This is a welcome and refreshing perspective. I'm in your group! Not sure whether it's reason to celebrate in this case though 😅 very delicate balance every day
I agree. There are a few ways in which the many types of long covid and me/cfs differ. One common distinction is whether it seems like an autoimmune condition (do steroids make you feel better?) or a problem of viral persistence (do steroid la make matters worse?). Another common distinction in ME/CFS circles is whether there was quick or gradual onset of the disease. Obviously the severity also varies greatly. And it seems the virus that caused it also has a role to play.
Agreed on all counts. It’s so complex!
"absolutely the worst idea ever" 😂
I hear that!
Gez, when you talk about resting the rest of the day (after your skiing for an hour in the Alps) are you in bed? Or reclining just sitting down so the heart rate stays at resting? Obviously we have to get up to eat, go to the bathroom. I’m in a crash right now but still have to get up to eat, go to the bathroom, brush my teeth. My bpm soars walking to the kitchen then goes to normal when I sit down. Is resting in bed or is sitting or reclining in a chair considered resting?
I'm not sure which category I'm in. I somehow drum up energy when I'm at work to do all kinds of things. I have to move slower and can't lift as much as I used to. I also try to rest whenever possible. Then on the weekends, I'm utterly useless! I have to sit on my computer chair napping off and on for a big chunk of the day. I initially have energy in the early morning but after I eat breakfast I'm spent. I'm taking a bunch of vitamins and minerals that were suggested by a doctor on UA-cam. I'm not even sure if it's helping. Maybe marginal improvements. I know last summer I overdid it by getting back into cycling. I'm worried I caused a setback. So this summer I'm taking it easy in the hopes that things improve. It's so frustrating because I used to be a Powerlifter.
How did you do the trip all the way to the alpes? I cant even drive for longer than 15 minutes.
After my first infection my PEM would come maybe the day later and last a few days and take me a week or so to get back to normal nowadays I can excert too much get symptoms straight away and they can last an hour or so then mostly go away I tend to have short term PEM now but I still can't excercise
This makes me wonder 1:48 i am both groups and it varies. Some times I recover from pem quickly and other times it takes days. It doesn't always seem to be related to the stimulus event either.
Interesting!
Would you say in what category I might be? If I can go for a run and be fine. But if I go for light gym (or bike) workaround to see if i can go back, i get PEM lasting for 3-4 days (exhaustion, hot eyes especially if focusing or on pc and sore throat). And I feel like if I sleep 5 hours, i get the same crash. What helps me during PEM is antihistamines.
I am confused, because I can do running and race my hearth rate high i would wager as i am not in good condition anymore. But once i try smt with muscles, i got pem.
Just eating wipes me out and has me exhausted! I’m trying exercising 3 mins x 3 day and do feel better moving but know I can’t do too much! Vertigo is a challenge as it gets worse or mild! I don’t drive or go out.. life is at a stand still.. I keep getting asked how I know it’s LC and not something else 🤬 my memory is totally shot!
I sympathise. I have ME/CFS, not long Covid, but I found eating and even just digesting food exhausting too. Hope you feel well soon.
With you on the memory being shot!
I was crashing after eating also. Now I basically just eat in the evening so if/when I crash, I can just go to bed. I also found that carbs caused me to crash a lot more than other things.
The long covid Superman, Gez. Thank you
Haha, thank you!
Another great video, Gez. I'm heavily in group 2, but my symptoms are so extreme. I can't even move my body without triggering PESE. Do you know of any UK specialists who know about autonomic reconditioning?
I’ll try and find out 👍
@@RUNDMC1 thank you!
Hi Gez. Covid for 10 weeks here. Seems like I have symptoms of long covid. I was in group 2 where I was gradually better if I increased activity around the house. I could feel myself start to deplete after an hour or so, with shortness of breath, palpitations, so I would go lay down which restored me somewhat, although still feeling very generally fatigued. Then I did too much and ended up in group one with massive exhaustion for days. I’m still in it. So if I get up to do laundry and my heartrate goes up 20 bpm from resting, I immediately lay down. My rate resting rate is restored quickly in minutes. How long do I have to stay resting before getting up to do another task in this situation? I’m still very fatigued to the point I’m in bed a lot of the day, except to eat, dress, shower etc.