Q&A on the Balance Between Rest, PEM & Autonomic Conditioning | Part 2

In this video I follow on from the primary discussion of how autonomic conditioning fits into the classic 'rest and pace' model for Long Covid and ME/CFS, to answer a number of questions that were posed on the issue on Twitter.
I do my best to answer them, but if you have further thoughts - lets continue the discussion in the comments!
RESOURCES:
The Long Covid Handbook (Feb 2023) by Gez Medinger & Professor Danny Altmann (and published by Penguin Books) is now available in paperback, ebook and audiobook:
US: a.co/d/0gvkJCU
UK: amzn.eu/d/9KjurGb
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 ...
Great presentation from Prof. Perikles Simon on exercise intolerance in LC (starts at 47 mins):
vimeo.com/771944349?ref=tw-v-...
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Watch my second channel! It's called Flip the Script and it's great:
/ acheronfilmsuk

[@carolenmarch7445]

It's phenominal the amoint of dedication and resilience LC patients require to just to try to hang on in there and find and persue an individual strategy to get well. You neeed all the support and kindness you can get. Thank you Gez for your own dedicated crusade and kindness in helping others, and may you be blessed in healing yourself , too. 😊

[@lisethouin8589]

Thanks again, I feel less alone on my journey every time I am watching your videos.

[@luisevieten2035]

Do not loose Hope. Many Greatings from Cologne

[@allisonbayliss7160]

Thanks for this. That ‘sore throat’ comment hit HOME. I realize now that when I’ve done too much, I always wake up with a severe sore throat. Crazy.

[@AJansenNL]

One thing that can make identifying PEM tricky is the fact that adrenaline can mask it. This can happen if we push through. The result is often a feeling of tired but wired. This adrenaline can make us feel capable, which can lead to a downwards spiral. It took me personally years to figure this out, because life as a single mum forced me into this cycle. And even when I finally did, I couldn't stop, rest and pace. Now I'm house- and bedbound.

[@RUNDMC1]

Absolutely agree on the adrenaline masking effect, and I’m so, so sorry to hear this :(

[@AJansenNL]

@@RUNDMC1 Thank you, Gez.

[@cindyc1700]

You are amazing! You have gathered so much knowledge and present it in a way that is easy to understand and still allows me to maintain hope! Please know that your continued work is truly appreciated!

[@RUNDMC1]

Thank you Cindy!

[@skyerobinson4148]

Agree so much. SO informative, no fluff yet somehow still really encouraging

[@joannarichards6245]

I second that! X

[@elsvandeginste4056]

Thank you very much! I wish my LC-doctor would watch this. 2 weeks ago I went to see her and she literally said:”How do you want to get fit if you do nothing but rest? You have to start graded exercise as soon as possible!”. 😞 I am exhausted from going to the kitchen to make tea and she wants to put me on graded exercise!?! Thank you very much for all the work you put into your videos!

[@carlasampson6129]

I hear you.

[@RUNDMC1]

Oh god, I’m so sorry this is the standard of care you’re getting!

[@alexba1ley]

Wow, this doctor should not call herself an LC specialist. That's very dangerous, unscientific advice.

[@multiversomental6893]

Ughh a neurologyst told me the same thing. In fact because of her bad advice my pem got way worse.

[@VeganCheeseburger]

Wonderful resource; thank you

[@RUNDMC1]

You're most welcome!

[@jenp41]

I am so thankful for you. Your videos and information have been such a support for me over the last 14 months of LC.

[@MiniNymph]

"Fun" autism + long COVID effects: Emotional deregulation can lead to PEM. That full body cry, that energetic laughter, the muscle tension from fear - that's exertion. Sensory overload can lead to PEM. It also does the body tension. Stimming can lead to PEM. That excellent tool that helps regulate - yeah, that can PEM you. However, not stimming can lead to the emotional deregulation or a full melt down. A full meltdown will create not only PEM, but all the usual post meltdown misery. Hyper fixation can lead to PEM. Didn't notice how much you were doing? Well, it was too much and now, PEM. So, avoiding feeling things to strongly, things that are too loud, bright, touching. Try not to regulate too much, but don't hold in the regulation because that's just as bad. Try not to get scared that your meltdowns now have extra consequences, fully in the knowledge you can't change that. And don't get too interested in anything. Not like you have special interests, right? Hello, I'm Mindy Sinclair, this is the middle place.

[@RUNDMC1]

Gosh Mindy - this is a whole other perspective on something that was god-level difficulty already.

[@alexba1ley]

Oof, are you sure you're not in The Bad Place? /s I am autistic and a caregiver for someone with ME and LC. I have wondered if all that would be true for autistic people with ME and/or LC, and what you said makes total sense. I really hope you can find some low spoons ways to stim and regulate yourself, as I understand how essential that is for autistic well being. There are potentially infinite options and I have faith it's possible, though the trial and error of finding them could be very taxing You didn't ask for advice, but if you want it I would suggest trying very familiar stims esp music and visual media if you are able to tolerate them. Also maybe safe foods and drinks if you have any that are not too difficult to chew or swallow. Or light pressure chew toys if they work for you. Maybe return to some old favorites. Things with no surprises where you already have a sense of how you will feel while engaging with them. I feel for you and wish you all the best.

[@beknight9399]

Ha, I was diagnosed (40 years old) with Autism. 2 years in Post-Covid and ME/CFS at this point. With Post-Covid I couldn't not longer compensate my autism, because this costs energy, too. I have cognitive impairment because of Covid, so my cognitive compensation get's massive worse. And I can't do things anymore that are good for me (sports, being outside). You name it, hyperfocus can kill me. I never had shut- and meltdowns in my adult life. Since Covid all the autism signs get worse. It's very difficult.

[@sofikat22]

I second this (edit) cognitive problems in LC have made me wayyy "more autistic"

[@beknight9399]

​@@sofikat22I've gotten so worse in communication skills, my sensory issues are insane and I couldn't do my loved routines... Because of my disabilitys with Post-Covid I have to ask for help, less autonomy....That's difficult, too.

[@Anna-if8tc]

The 'middle ground' has been tricky to define but I agree that it is about seeing 'spoons' or energy points as a budget, not a target, that if overspent will lead to misery. I often think of the Charles Dickens character Wilkins Micawber who warned of debt's downside: “Annual income twenty pounds, annual expenditure nineteen nineteen and six, result happiness. Annual income twenty pounds, annual expenditure twenty pound ought and six, result misery." Those of us with long covid are learning the same budgeting principle with energy!

[@RUNDMC1]

Exactly!

[@JacquiQ]

Learnt more in this one video that 20 years of CFS from medical profession., THANK U !!! Heard of Dr Nancy G Klimas approach to movement/exercise ? V Interesting . She does the anaerobic thing ..so for example, movement for 3 mins only complete rest for 10 mins. Then build up using these 'blocks' .

[@multiversomental6893]

I want to add a tip I learned from a support group: you can also use the stress markers in your smartwatch to get an idea of when you need a break. Side note, I didn’t know PEM was damaging. I feel bad bc I just got into a pretty bad relapse from being fully recovered :/. I guess I really pushed myself hard.

[@DirtyBlonde303]

Another brilliant video, thank you. I feel quite lucky in that I stumbled across the yoga nidra/meditation/breathwork/pacing using my hrv/Feldenkrais formula that worked for me very early on having previously had post viral fatigue, and discovering they helped - more by accident and being unable to do anything else than any science. 3 years plus down the line and although I’ve never been able to go back to my old job in the nhs (cognitive and emotional stress trigger my PEM much more than a short walk) I now can manage a lot more than I could, I can do some fun activities (surf small waves and float, gentle walks) again as long as gentle (I monitor my hr) with little adrenaline and planned rest before and after. I still get PEM when I get the pacing wrong (or I think f*** it, I want to do this fun thing and I know what will happen, but I have a VERY quiet week the following week). I also recognise the early signs - for me these are heavy teeth, a sore throat and a loss of elasticity in my skin - and then catch it with more rest. My breathing was shallow and I got very short of breath. Somatic work and learning to sense myself through the Feldenkrais Method has really helped, but as soon as my HR goes too high, my breathing is affected and I have to consciously change it. All that is to say I am moving on from being housebound, and learning to find joy in a new different slower way of life. For anyone struggling with learning how to deal with this disease, there is hope. But please don’t think you’ll return to your former self. Try and see the good things in slowing down - the birdsong, the flowers, and which friends and family truly care and you can count on. Love to you all, and the biggest thanks to you, Gez, for helping us navigate these treacherous waters ❤❤

[@RUNDMC1]

I completely agree with this sentiment :)

[@Shannon_Robbie]

There are people who have fully recovered from CFS though. I know a woman who can now do all the things she did before. This is giving me hope!

[@martham8986]

Thank you, Gez for all you do. 3+ years LC. So debilitating...

[@beknight9399]

I agree with you. If you are unsure if you are "normal tired" or have PEM you don't have PEM. The feeling to "normal tired" is very different.

[@funbarsolaris2822]

Thanks for all the great videos Gez, so helpful for so many. Ive found as someone sick for 3 years now building up excercise has only got me so far, after year 2 a brick wall had been reached. My symptoms are very neurological, 24/7 headaches, cognitive problems, nausea, fatigue/weakness in limbs and strange 24/7 visual static (visual snow) and blurred vision as well as a myriad of other less debilitating but still unpleasant symptoms

[@woeptidu2933]

I suffer pem and I thank you for all the explanation! Very helpful thanks allot for all youre work

[@hopemoore7135]

Thanks for to updates, greatly appreciated!!

[@Anna-if8tc]

An incredibly sensible bunch of answers. I think we underestimate how tiny our incremental steps need to be, but any progress is progress. As a Group 1 person, I have no problem differentiating between PEM and normal tiredness Tracking through wearable tech has been great for getting some objective data that has confirmed what I am feeling.

[@andrewparsons6416]

You are an absolute star Gez. It's so helpful to hear you talk about the kind of symptoms I'm suffering and realise that it is a real thing and not just in my imagination. It's also great to be able to share your videos with my family which helps them to understand what I'm going through. I keep getting lured in to doing more than I want to because I feel guilty for saying no so often, and then of course I need 24-48hrs of doing nothing......

[@RUNDMC1]

It’s SO, so hard Andrew. Hope you do get some understanding and recognition from your family!

[@cwebbwash3]

I particularly am prone to the flu-like PEM, I am starting to learn. So frustrating to not understand this mechanism. Thanks for the video!

[@becomingapegazebracorn]

I 100% believe, for me at least, it's something to do with the muscles/body not using oxygen correctly. I know from RHC with exercise (I'll soon be getting an ICPET) that my muscles initially extract LESS oxygen at the start of exercise and even at the end, they have extracted less than a "normal" person. In the real world, I can recover from a high intensity workout, be it heavy weights with low reps or a HIIT cycling class easier than I can a mile walk. If I stay anaerobic oddly enough, I do much better. Things like brushing my teeth or washing my hair make me arms burn and if I overdo the "aerobic" work, on top of PEM, my arms (more than my legs) can feel heavy, weak, and difficult to move for DAYS until they recover. It's very strange.

[@caroa5097]

Thank you I too have really bad pain in my arms on exertion and have done for years since viral infection and me/cfs and now long covid. Myalgic encephalomyelitis.... I understand Myaligic means muscle pain. I've only just found this out after years of suffering from it.

[@robinhood4640]

I couldn't understand why doing the washing up or having a shower was triggering my autoimmune flares for years, and not one single doctor asked me, or even mentioned that endocrine disrupting chemicals in the washing up liquid and body gel shampoo, could be disrupting my endocrine system. I changed the washing up liquid and body gel shampoo and i no longer have flares when i wash up or shower. The mistake i had made for 7 years, which caused a lot of unnecessary suffering, was to try and understand why things i was doing was triggering my immune system. It had little to do what i was doing, it was simply what i was breathing, while i was doing it. Often what i was doing was causing the air to be triggering the flare, but sometimes it had nothing to do with it. For example; showering did cause the problem because of the gel i was showering with. Sitting at a specific bar drinking coffee, wasn't causing the problem, the long line of buses with the engines idling next to the bar was. I wish you luck in your recovery.

[@GeorgeMonaghan]

Great series of videos so thank you for all your efforts. My own doctor has put me on a beta blocker and a calcium inhibitor that basically expands the blood vessels. My heart rate and blood pressure can spike usually the next day if I have been exerting myself so those are to keep it under control. Be interesting to hear what treatment others are receiving until such time as there is a proper medication/treatment for the LC. With so many symptoms that is going to be a real challenge. My tinnitus starts to rage - I know my heart/blood pressure is rising.

[@trishafrye53]

I am definitely Group 1😒 Thank you so much for these videos. I miss swimming as long as I wanted before Covid 19. Then the sudden muscle weakness, extreme fatigue, etc the past 3 years and counting. I have been pushing lately and I thank you for the reminder that if I feel really bad, I need to back off and do yoga. 😂🎉

[@cas9065]

Thank you so much. I think I have been overdoing it regularly for the last three years. Got myself better a number of times to try to get back to work and would continually overdo it every week for months and getting worse every week until I just cannot do it anymore. Will look at your film now. Thank you.

[@rev.rachel]

@Gez-only just starting this vid, but wanted to thank you: Your comments a while back about giving yourself a day of nothing when travelling were so helpful. My wife and I went out of town for a wedding, and we went ahead and booked an extra night and arrived early, and it made all the difference in the world to be able to just rest and get settled before the festivities started. So thank you for the tip!

[@RUNDMC1]

My pleasure - glad you could enjoy the wedding!

[@robo6548]

Very interesting. Worth mentioning that ME/CFS can be rooted in non Covid e.g PTSD or chronic stress. Non long covid is now recognised as a separate cause in the WHO ICD.10 catalogue.

[@kristinae.7084]

Just found your videos today... they are so great and really helpful. THANK YOU!

[@RUNDMC1]

There’s plenty to get through! 🤣

[@SuzetteMorganStudio]

Does anyone else experience a hybrid of type 1 and type 2 PEM? I become exhausted after simple tasks, and if I have a good energy day and do a little more than normal (but not overexerting for each activity) I'll crash completely for a day or two afterwards.

[@sannivanni]

Absolutely! I don't have LC, I have me cfs. It's 4 years now.

[@irenatarvid]

Yes, I live with all that for many years now, I am only lucky that I do not have brain fog. When the LC started to be discussed I knew that it is principally nothing new, just more people simultaneously started to experience it and all of a sudden this phenomena attracted mass attention.

[@robinhood4640]

I made the mistake for many years, of thinking it was what i was doing that was triggering my flares. How wrong i was. Sometimes, someone else did it for me, i still had a flare. Other times, if i did exactly the same thing at a different location, i didn't have a flare. If anyone has the same experience, they need to acknowledge that it is not what they are doing that is causing the flare, and that they will never understand the cause of their problem if they do not acknowledge it. Looking for the answer in the wrong place will not get a result, irrespective of how hard you look. Thinking what you do is responsible for triggering a flare, is a very easy mistake to make, for the simple reason that when you do it, it very often, or always triggers a flare.

[@pamponsart]

Yes, I am a hybrid also. Mostly I belong in Group 1 and have done so for 3+ years now Thank you ❤ Gez for all these videos!

[@TeineUaine]

I'm in group 1 (Covid March 2020, LC and PEM since) and I get best results if I am as active as possible with strong pacing and spoons management but I don't exceed my limits (task threshold or daily threshold). By doing that, the threshold naturally rises on its own very gradually. Pushing past limits ALWAYS results in a significant setback to threshold that lasts from days to weeks, and time needed to raise it again. My best improvement over time has been directly related to learning how to monitor threshold and stay below it. A PEM crash flares up all LC symptoms, not just fatigue. It is critical to avoid pushing a task to the point of "hitting the energy wall" in the red zone where the muscles stop responding and give up as this will always cause a setback and prolonged crash. I always stop before that point and have learned how to sense it looming. Thresholds and spoons do vary from day to day for many reasons, it's not a set amount, Gez explained it well. The one thing I can do without triggering PEM is gentle (no pushing for speed) lap swimming, which is horizontal and includes deep rhythmic breathing with gentle movement. I will continue to decline any arbitrary graded exercise recommendation, having experienced its ineffectiveness and harmful effects.

[@metteklint4790]

After a year woth LC i found a rutine that slowly got me back to normal. Was unable to do housework, go for a walk, socialize, read etc. I focused on getting back to work in health care driving to peoples homes in the countryside, two times a week, three hours at the time. Every day resting two times for about 30-60 minutes each rest. Yoga every day with focus on breathing. Blank days in my calender every other day. Socializing maximum 1 hour. Reading max 30 minutes. Absolutely no attempt to do exercise. Trying to accept that this was my life and every kind of aktivity, from going around in the supermarket to vacuumcleaning i considered as aktivity and i moved in what i called my thai chi pace. Normally i use fast movements. This i did for about a year after my illness and slowly i could do more but never trying to force it. Maybe i read 40 minutes once. And then only 30 minutes the next many times. Maybe socializing for 70 minutes after 4 months, and always(!!) Doing my two restings each day. Even though i didnt feel tired, i did them. Cause my body and nervoussystem needed that. Today 3,5 year after my covid 19, i am back to normal. I run, work, socialize, party, do work out, read like before. I often rest before i go to work in the afternoon, but just about 20 - 30 minutes, and i no longer crash. A big difference for me was the acceptence that i could not train or force healing or using my will power. It would only make things worse. I thougth of my self as Job in the book of Job, and all my anger and tears and frustration was the same as blaming God. Only here 'God' was a virus or in fact the devil playing with mankind to proof that he was more powerfull than God. And who are we to understand 'God,? I sure dont. And it was not up to me to understand the nature of this f#%@+@& virus. I gave up trying to. And just lived my life with this new hand of cards. But i used a restricted set of rules and they made me feel good and avoided the many hard crashes.

[@alias701]

Thats a really good advice. Thank you

[@alias701]

I think its very healthy to maintain taking pauses to rest and calm the nervous system

[@TheLisajoyce]

This was such helpful advice!!! I think I’m my case I had no choice but to work full time and it has set me back time and time again. I wish I could just work part time so my body could have a chance to heal. So glad you are better

[@TwoMillionth]

Well ... thank you 'just-a-bloke' ... for providing us with your videos. They are incredibly informative, compact, well proportioned, structured, edited and indexed. That's so necessary with a brain that has information processing problems. Your videos are pleasant to learn from, watch and listen to. I found your videos in July 2022, when I had been stuck with a malfunctioning body and brain for a year. I still wish I had found them immediately when my symptoms started in June 2021. For months, I thought my immediate stress response to any stimulus or activity were not in line with long covid symptoms. Health professionals in my country (The Netherlands), did not recognize them as such. They did not exist on their symptoms list. To realize that we could already have known so much more about it at the time ... I just don't have words for it. You were already publishing videos for more than a year about it. *sighs* (Will post some thoughts about this video later on.)

[@RUNDMC1]

Thanks for the support - and I’m so sorry to hear about how much you’ve been suffering without help. I do hope things are beginning to improve for you :)

[@TwoMillionth]

@@RUNDMC1​ Actually, things have been improving over the past one and a half year. I think I'm entering a new phase now. It has become possible to cross boundaries without it inevitably ending up in a disruptive backlash that enforces a slow down. I'm hopefull that this ultimately will appear to be the way to being able to push boundaries again. The change is visible in my heart rate value patterns on the smartwatch. Recovery time from heart rate spikes is improving and the lingering complaints afterwards are disappearing to the background. Whereas for two years, there simply was no other choice than to take things extremely slow to keep myself functioning without getting stuck in debilitating symptoms, I can now do things more spontaneously. It's even becoming possible to expose myself more to stress. The level of recovery after exertion and exposure to stimuli is starting to normalize. Crossing the heart rate of 120-125 is still leading to spikes but they are lower (155 instead of 170). And my heart rate now drops back below 90-100 within minutes, instead of staying in 100 for hours. For months, I had to avoid getting any heart rate spike, so I wouldn't end up with returning or increased symptoms (tingling, hypersensitivity, joint stiffness/weakness, hyperventilation related stuff, cognitive stagnation). That situation was also visible on the smartwatch: an increased base heart rate, responding spiky to anything, and a two-three days increased average heart rate. Resilience is coming back, I can feel it! Although it still has boundaries. It’s not like I can afford to expose myself to exertion and stimuli for days in a row and it’s absolutely crucial to get to bed in time at night.

[@zonnebloem100]

​@@TwoMillionthHoi ik woon ook in Nederland, wat fijn om te lezen dat het beterder gaat met je, zou cbd en cbc iets kunnen helpen?

[@TwoMillionth]

@@zonnebloem100 Geen idee! Zag volgens mij dat er in Canada onderzoeken bezig zijn daarover? Ik ben zelf sowieso niet geneigd om van alles uit te proberen. Voor mij werkte het vooral om écht alles supersloom te doen, dus ook bewegingen als afwassen, je omdraaien, opstaan. Het voelde alsof mijn hersens/lijf dan minder in de war raakten, alsof die zo de tijd krijgen om het bij te benen. Heb qua voeding/middelen alleen gelet op meer inname van dierlijke eiwitten (voor spieropbouw en vitamine B12, omdat ik last had van krachtverlies en tintelingen) en had een hele tijd dat ik continu iets bij me moest hebben om van te kunnen drinken. Had een sterke behoefte aan meer vocht (terwijl ik vroeger juist standaard te weinig dronk). Ging in de koudere maanden de deur niet uit zonder mijn thermosbeker caffeïnevrije koffie verkeerd of thee. In de warmere maanden moest ik altijd een groot glas water in de buurt hebben. Op enkele momenten / korte periodes na, heb ik toch wel het gevoel gehad dat het uiteindelijk de goede kant op ging, waardoor ik niet de behoefte had om andere oplossingen aan te grijpen.

[@Turtledove2009]

You are such a treasure. One of these days, I'm going to play all your films again and try to support you that way. Many, many thanks, Gez!

[@RUNDMC1]

Haha, thank you!! Re support - there is a mechanism on KZbin to give a super thanks - might save you a bit of your precious energy :)

[@irenatarvid]

Thanks for the work you do, it is priceless in two ways, understanding the pathology and education the wider audience. In my experience living for 20+ years with practically the same variety of symptoms after tertiary originally undiagnosed and untreated Lyme, both patterns can occur, that depends on type and intensity of activity. You just learn to plan and manage everything, sometimes prepared to pay the price you know will follow. Having coeliac, Hashimoto, Lupus/Sjogren's and a bunch of other minor autoimmune conditions, it is still possible to have happy and productive life.

[@heidisaglund3443]

Excellent video! All your videoes are so on point, no time wasted, love it!

[@RUNDMC1]

Thanks Heidi!

[@simonduckworth5941]

This was brilliant Gez! Really useful, thankyou 🙌

[@RUNDMC1]

Thanks Simon!

[@jaynesierakowska3120]

Thank you for this timely video. I'm in a PEM crash at the moment because I walked too far yesterday!

[@deborahschmidt7123]

Excellent advice, all of it! (ME/CFS since 1996) I especially endorse (horizontal) meditation. My spiritual practice has helped me find meaning in life after having to abandon my career. I’m also now much better at seeing how pain doesn’t have to become suffering.

[@RUNDMC1]

Thank you Deborah!

[@margaretskinner1416]

Thank you once again❤

[@RUNDMC1]

Thank you Margaret!

[@angelacrowley819]

Really great and helpful video as always! Thanks Gez and look after yourself too!

[@RUNDMC1]

Thank you Angela!

[@TwoMillionth]

About the middle ground: I think it's about (repeatedly) finding balance in how you have and wánt to distribute your scarce energy between three areas: physical, cognitive and mental exertion. Besides that, it took me awhile to become aware of two energy things that were crucial for my progress. First, the realization that rest and recovery mechanisms are an activity too. The body and brain need energy to run the recovery mechanisms after exertion and keep (or make) you sane again. With long covid the energy production is sabotaged, so you need to make a reservation for that energy. Second, it's important to not just look at the cost of energy for an activity. Certain activities actually give back mental energy. I believe it's not just about looking after your mental health but that that's what ultimately matters most. At some point, you simply need those kind of activities because they make you feel human, or: yourself.

[@RUNDMC1]

Great comment

[@sannivanni]

Thank you Gez!

[@suzyboltyogaforlongcovid]

Nice Gez. Great source of info. x

[@RUNDMC1]

Thank you!

[@philweaver457]

Thank you so much Gez. This helps a lot.

[@RUNDMC1]

Cheers Phil!

[@Unitedstatesian]

Q5: Can you rest too much? I think so. I need good sleep to heal. Good sleep is dependent on a balanced day of 40% physical and 40% mental effort. I then have 20% left over for the brain (an energy hog) to heal and work at night while sleeping. Not using enough spoons leads to poor rest... for me. And I agree with your reconditioning argument. The lactic acid is like getting a workout and the lack of oxygen is like BFR strength training. The main loss is aerobic conditioning. Q6: Instead of GET (Graded Exercise Therapy) it is possible to look at it in a more general sense by changing exercise to "exposure". So you find something that tests your limits... it might not be exercise...it might be a phone call. Then you try that on a good day...while respecting your spoon limits. Maybe you walk up a flight of stairs...then check your hr and see how you feel. Then another time you try 2 flights. Then maybe those 2 flights become part of your daily routine (when you feel well) and then test with a small mental activity the next day...etc...

[@RUNDMC1]

Great thoughts!

[@sparrowcrow]

Trying to find some ability for movement in each day, even if very, very tiny is important. I started just by squeezing and relaxing my muscles in bed. Then very light use of tension bands. I think it is important not to worry about needing to "exercise" but to realize, just moving your body a little each day when you can will help.

[@mary3659]

What a great video. As a group 1 participant who is actively playing sports again, these questions brought up a flood of memories for me. At my sickest, I would need a nap after a bath. I think it took a good 9 months of deep rest, very intentional eating and support of my immune system for my mitochondria to heal enough for me to walk short distances and start moving again. Now able to play decent, competitive softball. Thank goodness for cellular energy! Really enjoy, and benefit, from your content. Thanks!!!!!

[@RUNDMC1]

So happy to hear about your recovery Mary!!

[@petewarby7158]

I wish you would talk to my employer! You are very articulate and that's something I have lost a little since covid got me in Jan 21.

[@RUNDMC1]

So sorry to hear this Pete!

[@NatsWright]

Its very puzzling LC, I was seriously ill, with the pneumonia that covid caused. I suffered fatigue and PEM, terrible muscle weakness and it lasted for months, in fact around 15. However I gradually increased my exercise, and although I did suffer PEM and fatigue, it gradually improved. I started running 3 months ago and am now fully recovered. The question is, why did I get better, after LC, post viral fatigue and post ICU syndrome. I was in hospital for a month at the time I was ill and had a further 3 months bed rest. so I was seriously deconditioned with damaged lungs. Rest, the jury is out. deconditioning is real, and does affect you. I disagree on the loss of fitness, you loose a lot more, and the muscle aches really are deconditioning, IMHO. My experience is that you can recover.

[@RUNDMC1]

Firstly, so glad to hear you’ve recovered! I’ve made the point elsewhere that the after effects of severe acute infection (post ICU etc) are often lumped in with the debilitating illness that can follow mild infection as both being Long Covid. However the mechanism of illness for both would seem to be different. Organ damage and immune disruption for the former, metabolic/mitochondrial/neurological/inflammatory nightmare for the second. In the two groups mentioned in this film - you would likely be included in the second group. Again, great news on your recovery!

[@joannarichards6245]

I find pacing really difficult. I initially thought it was because you have to push yourself to get fitter and I found it difficult to simultaneously not push myself too far. I’d make myself so tired I’d have to withdraw from circulation and I felt like I’d fallen down a well. I think it is partly my personality type, I have never been great at a healthy balance. I was fit before long COVID and I found it useful to forget how many kilometres I could swim before and start with a beginners mind. Can I make it to that buoy and back without hurting myself, I call it a strategic retreat to find a way forward. It helps me cope with my new reality but remembering it won’t always be this way. Good luck everyone on their own journey…. X

[@krelb]

Thanks

[@MinouMinet]

Love having this information and shared experiences, so appreciated. Question for whomever: Has anyone any tips on differentiating between a reinfection and LC crash? My LC symptoms often feel exactly like a Covid reinfection, the best way I can tell is in retrospect. A crash isn’t as severe, though feels awful, with pure exhaustion. A reinfection, maybe answer 11 says it, very symptomatic like flu or strep, but would like to hear other’s experiences.

[@RUNDMC1]

Crashes can feel a LOT like reinfection. Tbh I would stock up on lateral flow tests. And if after a week you’ve not had a single positive - it’s a crash.

[@MinouMinet]

@@RUNDMC1 Thank you Gez, I really appreciate the support from you and your channel.

[@hatjodelka]

I'm a new subscriber to this channel and I've had LC for over three years. I'd love to know more about dermatological problems associated with LC. I know they exist but are not as common as other symptoms.

[@RUNDMC1]

Rashes are very common, usually MCAS related. Watch the couple of films I made about that back in the day (you might have to scroll back a bit into the archive!) Look for the interviews with Lawrence Afrin and Tina Peers

[@hatjodelka]

@@RUNDMC1 Thanks!

[@deethompson3592]

Thank you once again Gez 🙏You're not just one bloke - You're the go to BLOKE 👏👏👏I had an infusion on Monday and OMG! It's knocked me so far back ( Infusion for osteoporosis) I'm supposed to have them annually- that was my first and last 🤢 - I genuinely thought my numbers up - I'm back - albeit very delicately but I'm still here. Boy did all my LC symptoms come back with a vengeance I rang my very unsympathetic GP - Why do these people go into the caring profession when they clearly don't care. Anyway, moan over ha ha . Another fabulous podcast Gez 👏👏👏👏👏

[@RUNDMC1]

Thank you Dee - and I’ll so sorry to hear about your infusion. Hoping you recover quickly!

[@deethompson3592]

@@RUNDMC1 Thank you 🙏

[@sparrowcrow]

Q3. Adding on to the answer - Definitely focus on doing less than you think you can do. (A lot less!) But, I think it is very important to not emotionally worry or be fearful when you realize you have accidentally gone over, nor be worried that you MIGHT have gone over, nor enter into a situation where you are fearful of going over. This is of course easier said than done! I try to neutrally notice both the symptoms or situation, watch how I am holding my body (am I bracing and tensing up because I’m concerned about triggering PEM?) and simply step back into a rest mode as soon as I can (and without feeling angry, sad, diasppointed or resentful that I need to rest!). I believe it is important to watch these associated emotions and physical bracing to not further condition and ingrain the fight or flight response. Otherwise our little lizard brain will say, ah, see, there really, really is a reason for concern!! The tiger is near!

[@karentweedley5478]

I’m intrigued about the recovery plan. Gez, if energy is used physically and by the brain, then when you said you did skiing for an hour and then rested, what did you do during the resting phase? For example, was watching tv okay? I’m experiencing PEM every day but I’m also really bored as physically and mentally I’m not able to do much.

[@EvinFox]

Sheesh. I had "mild" Covid in early 2020. Then developed health issues. Managed to get it somewhat under control and then 3 years later, Covid again. Now I am starting all over. I had gotten to the point where I could vacuum and mop my 2200 sf house in one go. Today I had to rest quite a bit.

[@RUNDMC1]

I’m so sorry to hear that Evin. Make sure you rest as much as possible for the next couple of months. Reinfection doesn’t always have to set you back!

[@EvinFox]

@@RUNDMC1 thank you for the reminder and great encouragement

[@craigtalbot607]

I was finally feeling MUCH better! I had covid in Nov 2020! After doing what you said, I felt great most of the time, as long as I watched myself and didn’t overdue. However, I had a stroke the beginning of April … and now I’m starting over! My cousin was recently at a Marriott timeshare near us and we went to stay with them. It was great, but I didn’t take a nap for two days … and after I was home for two days, I was sleeping two extra hours a night and taking naps every afternoon! It’s been nearly a week and I’m barely starting to feel better! I’m not sure what the cause is, but it’s a pain in the @$$!

[@hollyeverhart5496]

Hey Gez do you happen to know if most LC patients deal with over production of mucus congestion? I know i have LC but not sure if this over production of mucus is part of it or if its from my nose being messed up . Im suppose to see a ears nose and throat specialist in August just wondering if there is something i could do to help this problem if its due to LC . Thanks for all youre doing you are the best and definitely give me hope . I share your video with people all the time . Ive met several people that dont even realize their dealing with LC until they see ur videos .

[@RUNDMC1]

Hi Holly - this isn’t that common with LC but could well be related in your case. Hope your ENT specialist can help!

[@fatmittens]

Hi, I too have LC and a problem with overproduction of mucus. I've already seen an ENT consultant who suggested it was 'Silent Reflux' and a possible hightened awareness to allergies/intolerances. I've been prescribed a nasal spray (Mometasone Furoate) for nasal drip and antihistamines. I've also been told to avoid (at least reduce) phlegm producing food such as dairy. The nasal spray has helped. Good luck when you go in August 🙂

[@scaryfairy1502]

Also worth trying: motivationaldoc respiratory

[@alexba1ley]

​​​​@@fatmittens I second Holly looking into reflux, allergies, and histamine intolerance, including potential mast cell activation issues. Glad nasal spray has helped, Samantha, and I hope you find more relief.

[@hollyeverhart5496]

Yea mine has gotten so bad most days I just don't even eat anymore . I've lost 138 pounds now within this last year and I'm on Flonase, and Azelastine nasal sprays . Allegra d and pepcid for antihistamines. And several vitamins. It feels like my body reacts to everything I eat as if I'm allergic to all foods . Praying this ENT dr can help . It's comforting knowing I'm not the only one suffering from this . Thanks for all the advice ill definitely take any that's provided .

[@martham8986]

I so look forward and enjoy your videos, Gez. Is there an online support group for LC?

[@RUNDMC1]

There are several on Facebook - and twitter is a very lively community too if you can find a few accounts to follow. Start with mine and then see who responds to some of the threads!

[@DanGinn]

Hi Gez, great film as ever. I have a question for you. There's a clip in an interview you did in which you say people who tend to recover are people who have looked within and made a significant change in their lives. Whereas others who plateaued haven't. You considered yourself in the latter category and I was curious as to why you feel you haven't made the sigficant change like those who have go on to recover?

[@RUNDMC1]

I did make that significant change about 6 months ago :)

[@eghie]

A protocol I got: every day, you can choose from the following exercise timings: - 3 times 5 minutes a day OR 2 times 10 minutes a day OR 1 time 10 minutes a day Do that with a light exercise on a pace where you can normally talk. And keep a log on how you react. Do 6 days a week your exercises, where every day you can choose again what form you do for that day. And slowly building up, when you notice you don't crash. Every 2 weeks you can build up with 5 minutes on your training, but when you are going to crash, you need to stay on what you can endure. So the pacing is in time and in maximum excertion and not on heart rate or other measure.

[@TwoMillionth]

About pushing and resting: To me, it felt better to stay as much as possible on a slow and steady level of activity in order to avoid having to radically rest. The times that I got into a yoyo situation, it made me feel depressed and disturbed. I think it cost me more mental energy un-rest than it provided me with rest … Now that my recovery time after exertion, and even after stress, is improving, I'm starting to feel less reluctant about pushing or crossing boundaries because I know I will recover relatively fast from it (with a maximum of a day of slowing down). Another thing about rest: In my experience, I need to make sure that I alternate all day between (light) movement and passive rest. From the beginning, it has felt as if moving is necessary to keep my circulatory system from doing too little (which leads to increased or returned symptoms). About deconditioning: In my case, I believe it's a combination of muscle weakness and the firing of the muscles. Joint stiffness, loss of strength and coordination problems made it impossible for me to move decently. When those problems diminished, I tried riding the bike again but the upper leg muscles didn't respond so no energy came to create pressure or force. But I do think, having had less exercise has probably resulted in an éxtra call for energy to get things moving? The energy production in the legs returned quite a while ago but I wasn't able to get far because after two minutes my heart rate would spike of which I didn't recover well enough. Recently, this has improved (but with limits).

[@RUNDMC1]

Agree yo-yo, or boom and bust, definitely not recommended!

[@user-pv6me7yi3v]

Hi Gez, been following your work from the start and it’s all very much appreciated! I’m currently in a slump again after having a few good months, and I have recently been made aware of a low sleep respiratory rate, is this something that has been discussed among your very many contacts? Many thanks

[@RUNDMC1]

I’ve not heard of this before actually - probably because no-one is actually aware of it!

[@user-pv6me7yi3v]

@@RUNDMC1I’ve accidentally stumbled across it… most wearables like the apple watch or fitbit seem to track it in the background. I wasn’t too sure about accuracy so checked against a few healthy friends and family, all of which are bang in the middle (13-17) of the expected healthy grouping (12-20) whereas I myself am far lower at 7-11! Potentially bradypnea which would be another misfiring autonomic function!

[@brookem706]

Thanks again for another great one! I was about 2.5 years out from original infection and was managing my energy/ crashes pretty well by my average HR for the day and got infected 2nd time beginning of the month . Of course my fatigue has flared and my prior method is no longer working. I am unsure where my energy envelope is currently . Should I go back to basics and use spoons?

[@RUNDMC1]

Absolutely yes. Go very easy when it comes to reintegrating activity!

[@joeconrad8868]

Hi Gez! I find your channel and book very helpful in this difficult time. One thing that helped me a lot that I learned from you is Niacin. I'm just not sure about the dosage. I take about 110mg of Solgar's No-Flush Niacin (Inositol Hexanicotinate) per day. Can I ask what dosage do you take? Many thanks for all you do!

[@RUNDMC1]

I take 150mg of flush in the morning with my breakfast 👍

[@joeconrad8868]

@@RUNDMC1 Thank you.

[@Prince9146]

thank you for everything Gez! but it have been 3 years, when will cure come out?

[@RUNDMC1]

I don’t think we’ll see a ‘cure’, rather - effective treatments. But we’ll still need to be patient for those.

[@PurposefulPorpoise]

So i had to stop my 10 day fast on day 3 because i was getting really dizzy on TOP of my long haul dizziness and almost fainted. Being that i live alone and would have no one to call an ambulance for me i decided to stop it there. I have no idea if there was any benefit, im basically back to regular long covid.

[@gurmot]

The question about driving to the gym and swimming is answered as though the driving and swimming are equivalent in terms of spoon usage but in my experience these can be very different things. Swimming uses physical energy whereas driving uses cognitive energy. I believe we have different energy reservoirs for physical exertion, emotional exertion and sensory exertion all with finite capacity which can become exhausted and cause a crash. They may be linked but it’s not as simple as counting the spoons used to drive to the gym and then not swimming if you’ve used too many as they come from different reservoirs. I find that driving uses my sensory reserves primarily and emotional reserves if it’s a difficult or stressful drive. So driving with radio off to cut out sensory inputs, possibly wearing sunglasses to cut glare and driving slowly and calmly are how I do it these days. Driving to the gym never stops me exercising. I don’t get PEM but I do get post emotional malaise (after an argument) and post sensory malaise (after going to a busy museum, crowded and noisy pub, airport etc). As I said before, I think there are more than two groups of long covid sufferers.

[@RUNDMC1]

Yes I agree it’s a very complex picture! Some will find the spatial cognition and co-ordination of driving hard, others will be floored by zoom calls. You can either split up the spoons into different types - or just allocate different costs to each activity which are individual. At the end of the day if you have different types of spoons it’s the cumulative spend you have to be careful of - so you might as well group them together.

[@klarmour1]

Hi Gez! A bit off topic, but have you come across much information around “small heart syndrome”. I have been reading a bit about it in relation to research into CFS as a proposed mechanism for fatigue, palpitations etc.

[@RUNDMC1]

I haven’t I’m afraid!

[@Jablicek]

I pushed through PEM for years and did irreparable damage. Definitely not recommended!

[@irenatarvid]

Agree

[@robertbogle2935]

Do the people that get the shorter-term, milder version of PEM have to take it as seriously as the other group? I'm 4 months into LC and I took it hardcore seriously because I was full bedbound mode for a couple months and only after a situation that caused me to do a bunch of activity did I realize I have gotten much better, thankfully. I never could figure out if I had the bad kinda PEM or not. At this point I still am careful but get around the house and am stuck to screens, which are like crack after you couldn't do anything. Screens seem to make me dizzy but overall symptoms haven't gotten worse over a couple weeks since I've been more active - other than dizzyness and a bit more tachy but I overall feel best since this all started. If I take the cardiologists opinion, it's all just anxiety and I can call it a day ... thanks, doc!

[@RUNDMC1]

Group 2 *in theory* shouldn’t worry about PEM leading to worsening symptoms longer term, unlike group 1

[@tessav4487]

oh wow, I wish I found you sooner! I had covid/long covid starting march 2020 and as a lifelong runner it took almost two years to realize this is why I struggle to do any exercise with higher heart rate (and it gets high so much faster/quicker) I was definitely keeping my symptoms along by constantly pushing it over and over again. I just had a V02Max test and found out my capacity is about half of what it was when I was running my best. Good news: now most of my symptoms are gone/manageable as long as i don't do any high intensity training. But I wonder if my body will be able to heal enough so one day I could run well again, or is my low Vo2max my new permanent number? Any thoughts? Also is there a link to that slide from the beginning? I would love to share it with my sports med doc! Thanks again!

[@RUNDMC1]

Unfortunately there isn’t a link - just screenshot it! And we just don’t know re recovery from LC yet - we’ve not done VO2 max tests on people who say they’ve recovered. Personally I’m not expecting to be running any more sub 3hr marathons :(

[@tessav4487]

@@RUNDMC1 thanks! I appreciated the feedback, I'm gonna take your advice and stick to that .55 of max heartrate for a bit and see if that walking/light work zone feels better (i'm sure it will). Definitely thankful to be feeling better than 2 years ago but that 'runner brain' really tricks me into thinking I can pick it back up again. Appreciate all the work and insight! thank you!

[@flubbsflubberson]

I’d love to practice radical rest, but have a fulltime job and no one would financially support me if I didn’t work. It’s suffer and work or be homeless and probably still suffer, lol. I’m hoping I can still heal while putting myself through the ringer, if I crash to the point of non-mobility I might as well be dead.

[@RUNDMC1]

This is an impossible situation so many people find themselves in :(

[@olgasantiago-agirlfriendsguide]

❤👌🏻🇺🇸

[@CLove-mo7cc]

I wanted to know how cortisol and stress events can cause PEM

[@RUNDMC1]

Nervous system overload - discussed in the previous film

[@RUNDMC1]

@@zonnebloem100 low cortisol seems to be the issue. CBD oil can help manage some of the inflammatory response

[@kathrynedwards1092]

I don’t get to pace because I have a child to look after. I constantly push beyond my limits every day. I can’t be the only one! I’m worried how this effects my recovery or if I will ever recover. I’m 3 and a half years in.

[@kapiira9]

I don't have any answers, but you have my sympathies. Going through this with a young kid must be so difficult.

[@BorisStokman]

This conversation is also interesting on the subject, and how does it relate to your approach? kzbin.info/www/bejne/j2ndqZqamZaVr68

[@pamponsart]

Does age matter? I'm 81 years old and 3 years post covid? Thank you, Gez

[@pamponsart]

I just lost my reply 😢 First of all Thank You, Gez! ❤ I am now a "Hybrid " at 3+ years.

[@fgomezacebo]

talking about sore throat…….. my doctors think it could be a larynx neuropathy …. it makes sense in the contest of long covid

[@fgomezacebo]

sorry for my English…. instead of contest I think it would be context

[@pineapplehouse5866]

Is there a Covid reason for your blue tongue or just sweets?

[@eghie]

I see a blue tounge.. Methylene blue testing?

[@RUNDMC1]

No, was a neighbours kid who pranked me with a blue sweet 🤣

[@eghie]

@@RUNDMC1 haha, his pranks seems to have a bigger reach then he expected. ;)

[@samfourness4737]

Are you recovered now Gez?

[@RUNDMC1]

I’m not back to exercise yet unfortunately

[@heddysue0655]

Sounds exactly like fibromyalgia.