How To Phenotype Your Long Covid | Activity, Dysautonomia & PEM
Вставка
- Опубліковано 30 кві 2024
- In this video I share another short extract from my interview with Dr Eric Gordon from the upcoming free online symposium titled “Cracking the Online Illness Code” that runs from May 6th - 12th.
In the last video I spoke about the importance of phenotyping when it comes to diagnosing, researching and treating Long Covid, and how we’re likely to end up with perhaps six, seven or even more separate non-exclusive phenotypes that represent the Long Covid as a condition in its entirety.
But two of those mechanisms are particularly common in Long Covid, and so in this video I talk about how you can differentiate between them and work out what might be the major drivers of your symptoms.
Register for free access to the summit:
chronicillnesscode.byhealthme...
Register for full unlimited access:
chronicillnesscode.byhealthme...
References:
Davis, McCorkell, Moore Vogel & Topol, Nature Reviews Microbiology:
www.nature.com/articles/s4157...
Yin et al, Nature Immunology (T cell exhaustion)
www.nature.com/articles/s4159...
Liew et al, Nature Immunology (Phenotyping):
www.nature.com/articles/s4159... - Наука та технологія
The rule of 3rds from Tai Chi: when healthy, only ever exert 2/3 of your capacity. When ill, only 1/3. If you stay within this 1/3, your body can heal and your capacity grow.
Good advice I could have used when I pushed myself up and down the hill by my house when I was so ill I could hardly make it to the end of the block after 2 and a half years I have to say though that it is starting to get easier I stuck with it but I did have a heart attack and a stroke so that's my long covid story
ME veteran with LC here. Stress can change how to body responds to activity. A general increase in overall stress can tip a group one into group two and an reduction in stress can allow a group two to move to group one (sometimes). Triggers can also mean someone who is normally group one can be tipped into group two during particular activities. For example someone may be perfectly fine doing yoga or regular walks in the park. Walking around a city may shatter them though. The body might not like the sensory overload, noise, the bustle, the street food, or being closed in on trains. Wider context is key. Someone might even be fine doing a weekly dance class - but sitting for lengthy periods in traffic exhausts them. Someone might be able to binge UA-cam videos but attending college lectures gives them brain fog. Being present with moment to moment physiological sensations will (eventually) let you know what you need to reduce or counter the rising symptoms.
OMG You are SPOT ON! esp w neurological crap like i have! ❤
So true , even just cooking a meal or trying to find something
I am not sure it’s moving between the two groups, rather that if you are in group two, as long as you stay within your energy envelope you don’t get PEM. Stress changes your energy envelope, or rather countering stress uses up energy and so you can’t do as much activity before you get PEM. My understanding of what Gez said is that group one is not ME/CFS and I have observed in others when LC is definitely not ME/CFS and on the other hand when it is. Very good analysis from Gez - thanks.
@@emmafawcett7898 the problem with not noticing you can move between groups is that those who are in group two and who are more severe will live their lives under an energy ceiling, stay within their boundaries and fear exceeding them. Take this from a humble ME vet's experience who did spend a decade housebound and used a wheelchair but then improved. Doctors told me I'd like never walk properly again. I said nope, and went on to run a half marathon. I was originally diagnosed 3 decades ago (chronic post viral fatigue syndrome aka ME). Reading that may scare some people (she's been ill 30 years!!!) But it's not static, it's a scale or spectrum. There are a lot of recovery stories out there. People are finding their own way through this. If people view these groups as boxes they'll be stuck in them. It's actually more a process of evolution. An analogy I've offered before is energy is like money. Some people look at their bank accounts and don't believe they can ever make more. But what if you could? Even an extra few bucks? I'm not saying the answers are easily found or that I have them. I just know that change starts by saying 'what if...?'
You've absolutely nailed it for me and this is where the confusion lays - I cannot handle stress . I used to a police officer / escort and custody officer / traffic warden and worked in youth offending - all very stressful careers. I took a job in care thinking that it would be nice and steady - just how wrong was I and this is also where I caught the virus - I'm a first waver and have caught every other strain of the virus too - my Immune system is shot 🙏✨️Nameste
Wow amazing extract, I’ve “gaslit” myself so much about my experience, but this really helps me to better understand it. I used to crash heavy the morning after, and couldn’t tolerate interacting with others (even watching a movie with my girlfriend!), but now I can hold a conversation as long I want to, and can walk around the house as much as I need to. And my fatigue/symptoms are less intense, more mild-moderate, and they show up within 30mins of overdoing something. And then if I rest, I feel better (if not slightly worn), after 1-3 hours!! I struggle to remember and believe what I’ve just described (gaslighting myself that I was always this well, just whinging and overly anxious, it’s all my own fault I’m still in this situation etc etc), coz of my own emotional stuff, but also coz I don’t have any models/visions for what getting better or improving could look like! That’s why this video is so helpful, it explains and validates my varied and changing experiences.
Thanks Roland - you’ve hit the nail on the head. It’s so easy to gaslight yourself with this wretched condition! Glad to hear you’re doing better :)
Thanks Gez for another helpful video. Long hauler since 1-2022 primarily PEM type. Not medical advice, but sharing just to offer ideas to discuss with a dr. but I've had some improvement over the past few months on LDN/eliquis/asprin/jardiance/ketotifen/pentoxifylline. Have been able to return to work full time, do chores around the house, some light yardwork and very short bike riding after being bedbound/severe for several months last year. Still have a long way to go towards "normal" but thankful for the progress so far. Hopefully this encourages others to keep at it, I know it's a difficult road we're on and how hard it is to find something(s) that help. Hang in there.
"Knees to butt" is actually the best metaphor I've heard 😊
3.5 years in for me and I am almost recovered. I recently did some aggressive physical work, the most I have ever done and it stirred up something in me to the point where I have been having trouble sleeping. The good part is that i know its a minor setback and i should start sleeping better in a few days. Its crazy how it still affects my body after 3 years.
Interesting, am 2.5 years in and I have to really overdo work/stress to get trouble sleeping well and an uptick in brain fog now. Moving more, weights and zone 2 cardio have helped. Intensity tolerance slowly improving but HIIT defo gives me more brain fog still... I guess we are group 1 then...
Do you think you’ve been in group 1 the entire time or did you phase out of PEM/group 2 with time?
I have this too. I want to find out why it's a strange reaction 😔
I am currently laying flat, feeling useless and unable to string a sentence after exercising 3 days ago. I have the tight chest and dizziness when I exercise but when I push the exercise, which I track, I crash hard the next day and all my symptoms get worse, especially brain fog which I find the most frustrating, it frequently makes me feel like crying for no reason. This was really helpful, particularly during the symptoms and it makes a lot of sense. I think I must be in the second group but also have disautonomia. I would be very grateful if anyone has coping strategies for dealing with it. Thanks so much for your work, finding your channel was my lifeline. Best to everyone....X
Bless you. Likewise, over did it, relatively speaking, yesterday and earlier today. Feeling like I'm dying/death warmed up. 💜💜
Are you hyper mobile by any chance? Is your blood pressure low? Exercise does not help long COVID.
Do you get dizziness only when you exercise? I’m dizzy intermittently throughout the day regardless of exercising.
Take it slow. I tried to (gently!) exercise a few times during my last year of Long Covid and it always backfired. I wouldn't say you can't exercise at all, but you have to be careful and learn what your body will tolerate. Maybe slow short walks, maybe stretching and (really gentle) yoga? And lots of resting days. Pushing through will only make recovery slower. All the best to you and everyone here.
I belong to the second group, without dysautonomia (I think). I've just had my first anniversary of Long Covid and what I found particularly difficult at the beginning was trusting my own observations: For example, I noticed that walking uphill leads to crashes for me, as do longer periods of walking. It took a while to notice that.
For me, Long Covid started with (leg and arm) muscle weakness, anxiety and panic, partial loss of taste, a tight chest, nausea and fatigue, which I didn't recognize as such because I was already used to going beyond my exhaustion limits before Long Covid.
I'm now feeling a bit better and some symptoms have disappeared (thanks to time, using an electric bike and also LDN [low dose naltrexone]), but I'm still a ways away from "healthy".
What made it even more difficult to trust my own observations were doctors who didn't take my symptoms seriously or did not believe them in the first place. By now I know more than most doctors about Long Covid.
I’m group 2, I seem to be able to quantify physical activity for pacing, but struggle to quantify cognitive, social and emotional activity for the purpose of pacing. I’m 4 years into this and only just figured this out.
As always your ongoing work is very much appreciated, thank you and take care
Wishing you the best in your recovery Penny!
Thank you so much Gez for another helpful video🙏🏼maybe you would want to interview Dr. Sarah Myhill on the subject? She is very knowledgeable in treating ME/CFS, and Long Covid also is an energydeficiency/mitochondria malfunction problem. All the best to you🤗❤️
So interesting! Something that I have been experiencing, and I haven't heard too many others comment on, is the weather's impact on my symptoms. I live in the States and thunderstorms in particular really wreck me for days, each time. Add that to spring weather, where we get storms multiple times a week, and I'm going to be out of commission until November.
It would be interesting to hear some info about how weather affects others.
Thanks, as always Gez! What you are doing is so very important to me, and others like me. 🙌
@retroprojections Same, I'm in Seattle & the rain shuts my system down for 9 months out of the year.
Spring & Summer is where I "bounce back" a bit.
But our Springtime is very problematic.
Yesterday it was sunny in the morning, then pouring rain in the afternoon, then lots of hail, then sunny again but cold & damp and very cold at night.
Now, I'm in a crash, barely able to text here.
I would move to a warm dry climate if I had money & energy.
The weather definitely impacts upon me and affects my health. So much so, I’m going to have to leave the UK and move to the Mediterranean. I really cannot take the weather in the north of Scotland any longer. It’s going to take me some time, but hopefully it will be done before the end of the year and before Winter sets in.
So I completely understand and sympathise with you both and anyone else who also finds the weather affects their quality of life.
@@barbarateresarhiannonsreal1756I’m just north of you in Vancouver BC and it’s the same here for me and for everyone I know with MECFS and/or LC. I think just the dark of winter was a big factor too. Those Jan/Feb months are always hard on all of us in the PNW but now they’re especially draining.
LC March 2020. I’m writing this from Majorca. My second LC ‘training camp’ of the year. Sunshine makes such a difference to my energy levels. Having had this 4 years now I’ve found I’m much improved in summer then I get worse over winter only to improve again in summer. If you look at resting heart rate you find it’s lower in the summer than winter too.
To give an example of a benefit I had a rash for 2 months over winter living in the UK. Went to Alicante in January. It cleared up after 2 days of decent sunshine. It takes a little while to recover from the travel out but a few days in I’m twice the person I was before coming out. I find improved energy levels last about 3 weeks or so on return home. If I have to keep going on holiday it’s going to get expensive so I’m hopeful that if I can keep energy levels up over winter I can make further gains in the summer and eventually recover fully.
I’m out here cycling. This time last year I was using an electric bike in the UK. Rest day today but tomorrow I’m hoping to do a 60 mile hilly ride on a normal bike. It’ll be a challenge but riding in zone 2 mainly with lists of stops I think I can do it. In the last 2 days I’ve done 30 miles a day hilly. The sun makes such a big difference.
@@RailwayTavern wow.. we are miles off from each other, I'm afraid.. not just distance, but also in terms of experience with Long Covid.
Sunshine here means incredibly high temps and humidity, like 60°C. It's so oppressive. I'm happy to hear that you can get on a bike for 60 miles, I'm almost up to walking 1/8 of a mile myself, but then I need a week off to rest.
I wish sunshine helped, I really do. For me, it seems to be the opposite of what I need. Have a good bike ride in Majorca, though.
What excellent news you bring today! Thank you so much for sharing these brilliant insights into differentiating between major drivers of longhaul covid symptoms. These key bits of information are totally fascinating--thank you so much!
It’s a pleasure Cynthia!
I find that it is not just crashing, being firmly planted in the MECFS group, that brings me down. I was encouraged by my doctor to exercise slowly and then build up in minute increments. I logged this, finding that over a year I was getting worse, could not due as much and was having more bad days. I was very careful not to crash but was going in the wrong direction. I quit trying to jog - very, very, slowly. All my life my body was not happy if I did not exercise for at least an hour per day, and my doctor was egging me on for the mental health benefits, as much as the physical. I have since slowed way, way, down - walking at a forced slow pace (it take a lot of self talk to go slow), break up the times I move and been brave enough to not do anything when I did not feel well enough. I say that last bit because my brain fog is so much less if I get a three mile walk in per day. Not walking three miles all in one go helped immensely. There are even the rare days where I can walk nine miles. Through all this I noticed that I would become depleted of vitamins and minerals. No one wants B12 injections, and yes, my diet is high in B12. As the weather warmed I found my muscles cramping due to lack of electrolytes. Replacing those things my body uses up is helpful in feeling able to due the little things that I can due. I am shocked by how much my body is using up these things that keep it moving, and functioning, smoothly.
Years ago I met the author of the book In Praise of Slow, Carl Honore. I told him that after reading his book I'd been pondering that ME was "the disease of speed". Since learning how to slow down I've realised there was a lot of pain I was running from (literally running at times) as much as naturally trying to push physiolgicial boundaries. You might like Carl's TED talk. I also highly recommend his book. It helped me reframe my fear and grief of "slow". I too felt I needed to be brave to be slow and be still, for lots of different reasons. I don't feel that way now because I realised when I truly slowed down I came home to myself. That's not to say it was easy. It did help though. Wishing you the best in your recovery.
@@excel04 Thank you, greatly appreciated.
I just watched your interview with Dr Yes but... you held your end with great courtesy and quiet determination - congratulations!
I want to thank you again for your videos. About 2 years ago I started taking your vitamin/supplement suggestions. They helped me so much. Most of my long covid symptoms started getting better about 7/8 months after they started. I had extreme exhaustion, massive hives all over my body, lip and eye swelling, new severe allergy to dairy, panic and anxiety through the roof. I felt like my body was going insane. I was so ill my doctor didn't know what was wrong. They said it could be long covid. She said my immune system was going haywire, histamine problems. She did put me on Prednisone for a couple weeks and meds to helped with over production of histamines.Which I hate. BUT it did help tremendously. Some symptoms came back but the cocktail you recommended helped. Again thank, yout videos gave me hope.
Do you have intestinal problems?
I've had really bad post exertional malaise and PoTS for 20 months since contracting covid in Aug '22. All other symptoms, brain fog, aches and pains, poor sleep, etc have slowly resolved themselves but the PEM has been the most disabling. Prior to covid I was cycling 100-150 miles a week. The bike has been parked up since. I started taking proteolytic enzymes (Neprinol AFD) for the last 6 weeks. Not only has it cured my PEM but it has also cleared up eye floaters and reduced a posterior vitreous detachment in my left eye so my vision has significantly improved too. I would highly recommend this product. It's been a life saver for me. I still have some symptoms of PoTS (palps) but control this through breathing exercises and taking a methylene blue homeopathic remedy.
That's really interesting, I was taking an enzyme supplement - amongst many others - I wasnt sure it helped.
My palpitations etc come in rounds.
And eye floaters? Awful since SARS2 Covid - what helps me is milk thistle and specific eye nutrients.
I'm familiar with homeopathy but I'd not heard of that remedy before - can you elaborate please 🤞😊👍💜✌️
That is great about the Neprinol AFD curing your PEM and other issues. I am curious about your experience with this enzyme. Were you surprised that they helped? Did a doc recommend for COVID and biofilms? I have not heard of this brand so I am curious, but do take enzymes for mold/lyme/cancer. And did your doc or someone think these are the best ones? I just started Lumbokinase after some milder enzymes for a long time.
@@josie-gr1ylI haven't had any help from any doctors I'm afraid. I watched a video on Gez's channel where he interviewed Prof Doug Kell & Prof Resia Pretorius who were talking about the amount of anecdotal evidence for nattokinase and serrapeptase especially when used together. I tried Neprinol as it was the only proteolytic enzymes that I had come across. There's no info on how much to take or for how long so it's just been a case of trying it. I found my energy levels changed after 3 weeks of being on the product. I built up to about 6 capsules a day over this time but I'm not sure if it was necessary to be taking so many. I'm back down to a w a day maintenance dose. I'm amazed at the effects it's had. My sis has had ME for 30 years and I thought I was heading the same way. It feels nothing short of miraculous as I now have my life back and feel like myself for the first time in 20 months.
@@josie-gr1ylI haven't had any help from any doctors I'm afraid. I watched a video on Gez's channel where he interviewed Prof Doug Kell & Prof Resia Pretorius about microclots and who were talking about the amount of anecdotal evidence for nattokinase and serrapeptase especially when used together. I tried Neprinol as it was the only proteolytic enzymes that I had come across. There's no info on how much to take or for how long so it's just been a case of trying it. I found my energy levels changed after 3 weeks of being on the product. I built up to about 6 capsules a day over this time but I'm not sure if it was necessary to be taking so many. I'm back down to a 2-a-day maintenance dose. I'm amazed at the effects it's had. My sis has had ME for 30 years and I thought I was heading the same way. It feels nothing short of miraculous as I now have my life back and feel like myself for the first time in 20 months.
@@musoseven8218I haven't had any guidance from a homeopath but recently came across the Methylene Blue remedy in a 30C potency. I take it twice a day. Methylene Blue helps with mitochondrial dysfunction and helps red blood cells in their ability to carry and release oxygen. I tried it more out of curiosity and find it helps with palpitations.
Excellent video as always, love seeing researchers being so passionate and willing to learn.
It was a long time ago for me now. But for the first few months of my Long-Covid I had circa 30% of my pre-illness daily body battery. In addition to being able to do far less, I felt that vigorous exercise might actually seriously harm, or kill me. Four about 4 months, I used to get a huge pressure in my head - it felt like something would burst. So, for about 4 months I used to walk about a 1/4 1/2 mile or 1 mile in the morning. After about month 5 I was able to start jogging - which used to make me "crash and burn". Basically, I'm a Group II person. It was a case of one step forward, two step back, for about a year. It took about 18 months before I finally started to feel "normal" again. I still to this day don't think that I've fully recovered, but I'm light-years better than where I was in the dark days of 2020. Good luck All.
Thanks , another good video! 4 years in..group 2😢
In the past almost 4 yrs now, I have experienced both. Mostly #2.
Thank you, this has been so confusing for me. For four years I feel i have been in the PEM group, but wasn't sure if I was in the other one. Now, it feels like my body is finally getting over chronic inflammation, maybe due to the gut healing I've done, and my body is finally responding somewhat to antihistamines and my PEM is less, though I still need to pace and plan etc. I'm not back to normal but I can do much more at home and also a bit more out of the house.
How did you treat your intestines?
Thanks Gez, wish I didn't still have to follow you, but, I am grateful for your videos. I am still stuck in the 2nd group. I can exercise moderately, but within 2 days, I essentially crash. I find that gentle walking daily works for me. Any additional add on exercise still comes at a cost.
Can we have a deep dive on ACE2?
As a researcher, I don't think enough time has been placed into the Covid receptor itself.
We know that it's a gateway for many viruses but it also regulates blood pressure, wound healing, and inflammation, etc.
It regulates Ang II and we can see how damage to blood vessels and other tissue types occur.
Can ACE inhibitors possibly assist?
Ace2i was a big deal last year when it went into research, not sure where it’s gone
What’s Ang II?
My blood vessels have been severely damaged so I’m very interested in this topic. Thanks
I still find difficulty tolerating food. Eating is just uncomfortable and no matter what I eat I hit a threshold beyond satiation where I regret eating. This makes it easy to fast which has become my most comfortable condition. However I know I need nutrients, supplements are inert to me, real food is required. Sudden, frequent napping also is mandatory. I drink only warm water which is like a miracle remedy when combined with forced napping.
You may find your body can’t deal with the autonomic demands of eating - quite common with LC. One of the reasons fasting can improve symptoms.
I do not have LC (touch wood), but wife is type 2 since Aug 2022, hence i have great empathy for everyone with LC. My son is now 34 and was diagnosed with ADHD at the age of 2 by a brilliant man who lead the world in understanding the condition, its causes, and effective treatment. I now see the medical world and society inn general making all the same mistakes that were made before ADHD was accepted as being a genuine medical condition: ie rigid medical research methods that failed along with mass community ignorance resulting in much greater suffering by those with ADHD (and their families). So Thank You Gez, and others like you, for approaching the entire LC dilemma with such a wholistic open mind.
Thank you Anthony - wishing your wife the best in her recovery.
Thank you so much for this! I find I'm in both groups. I have signed up for the symposium. So nice to see you here again .❤
And I just turned 82 years old
so I think age does play a part in recovery.
Thank you!
Movement is key, do what you can, build up slowly and dont look back. Im back running 5km (could do more but not yet) 4 strength sessions a week. I feel im battling my mind more then my body
I am glad for you. This is unfortunately not true for everybody.
Fantastic you’re able to run again!
@@anna-marieeasmus7529 I understand this, Im just saying movement is key to your progress weather it's small steps or big ones. I wish you all the best
So jealous! That's great, go for a run for me will you? So happy to hear your success, one day it'll be me too 🎉
@@LetThoseOatsRoll if definitely will be, challenge your body a little bit every day. I still get mini crashes. But I recover alot faster. Instead of 2 week crash it will be half a day or 1 day. It's all about challenging your adrenals but also been kind to them. Stay away from coffee and stimulants they exhaust your adrenals
This was helpful in so many ways, I really appreciate that you're doing this.
My pleasure :)
Thanks Gez. Definitely group number two for me.
Another interesting, well presented, insightful video.
Answers a lot of questions 👍✌️💜😊
Thank you. That completely makes sense and is very helpful
Thank you so much for sharing your insights, Gez. I have had mainly neurological symptoms and fatigue for 2,5 years now. I listened to your interview with Realan and since I was already slowly improving I decided to start running. I started at the beginning of March and I have built it up very slowly. I run now 4x3 min with a break of 1 min. I run 3 times a week. The first 6 weeks, I felt really tired afterwards, but that is decreasing now and my cognitieve functions are slowly improving. Every time I run I think of the people who are not able to walk, run or exercise due to Long Covid or ME.
That’s fantastic, and I’m so glad to hear it!
Your awesome Heleen every time you do this your growing trust again with your mind/body.
I'm really looking forward to watching the whole interview! :-) i'm definitely in the 2nd category!
Hi Gez thanks so much for your work. I'm in second group with dysautonomia of some sort too.
I am in group 2 - can leave house for 4/5 hours but if 2 days in a row , I crash the following day for 24 hours . But, I had this energy fluctuation BEFORE I got Covid , and getting it made it worse , together with 3 other systems newly affected. Need daily movement or I get heart pains (which has been digestion related ) and my BOUNCER has been my friend .
Group 2 with dysautonomia. I do “knees to butt” 😅 a few time a day, a few seconds at a time of standing, a little longer of laying down.
Great explanation for the things that make me feel crazy. 😢
I'm a mountain leader in training, every Saturday I help lead the university group for a very strenuous hike. A few days later I get a migraine, vertigo, weakness and shaking etc it's a nightmare, takes about 3days to go but the vertigo still remains for a week. Moving makes thevertigo and head pain worse so I have to stop activity.
So sorry to hear this Jane :(
PEM dominant.. alpha strain.
Pacing has helped me get a life back but at the expense of no longer working.
Very interesting thank you
I would say yes to all. Definitely diautonomia. Haven’t found out where my line is.
I'm definitely No 2....just over 2 years. Lots of cognitive fatigue after family visits for 2 days. Also physical fatigue if I over do it...for 2 days. Trying to stay within my spoons.
Oh wow, this is so hard to parse in the middle of the worst crash I've had in years.
I think I'm type 2 - the PEM group? ME for 30 years before long covid. That PEM/energy envelope has changed since then and the most descriptive thing I've heard it called lately is a sudden overproduction of lactic acid that isn't cleared from the muscles. And it's only certain muscle groups, like thighs. Making walking up stairs particularly difficult when I crash. Looking forward to a time when I'm no longer sleeping on the sofa and waiting for the Ocado order.
Great stuff as always, Gez, and let's keep looking for the positives where we can everyone! Be well and take care x
Yes it's mostly my thigh muscles, people dont understand. Have started with a physio getting mobile which was great but now I need to take it down as the strength exercises are making me crash nearly daily now. Will continue with flexibility which doesn't seem to trigger the crash. Went for a 20 min stroll last week. Big mistake ha! Not ready for my marathon yet it would seem. Ya gotta laff or you'll cry cry cry....
im freakin out such a BAD relapse /covid ? crash here in U.S!!. its so disheartening!!! Not as bad as initial infection and crap but pretty horrid intense relapse🤷
Oh, golly
It's my thigh muscles too. However, I'm getting real relief with amino acids and, believe it or not, COLD WATER on both sides of my neck to stimulate my vagus nerve at the end of my shower. I can even go grocery shopping like a normal person afterwards. Of course I'm exhausted by the time I get back home. I'm 82 years old and 3.5 years post-covid. Good luck to you.
If you have had ME for 30 years then of course you are in group 2 because that is the one with delayed PEM = ME. Im confused why you said "I think Im in group 2"? The first group is not ME, its most likely dysautonomia or exertion intolerance due to some other cause. Have you only experienced delayed PEM since Covid?
@@wildgardens The first sentence infers that I was having trouble following properly, even though I watched it, with subtitles, three times.
Group 2. Delayed PEM, sometimes by days (although it was hard to tell with a 6-day work week, I was sort of always in a crash to a greater or lesser extent) and after I broke my body in 2010 then isolated PEM, especially after travel.
Since covid I haven't really had to suffer with it, owing to a much reduced energy allowance and more understanding of what triggers are. I can even travel now - no PEM, just a horrible fortnight long crash afterward. Holidays are such fun.
Brilliant thank you Gez
??? Has anyone tried water fasting? ???
Very informative thanks Gez. My autonomic system was definetly shot in the earlier days. Walking causes me less pains. But 3 plus yrs in. It's pain for me. Using my arms and hands. Ironing is excruciating in my shoulderblade. Hand cramps are terrible. The pain wipes me. Possibly group 2. The complexities for all of us is very different. In some ways I feel I've really relapsed.
I have pain, muscle weakness focused to my hands and arms as well. It’s so frustrating. I can hardly wash my hair.
Trail runner, got a mild cold this December when I ventured into London (masked). Have developed mild dysautonomia. I ceased exercising straight away, fearing PEM and making things worse. Noticed straight away my HRV tanked and RHR/HR increased. My sleep quality plummeted. Started exercising after 3-months and noticed, my stress levels increase (I think I went a bit too fast). So scaled it back and the stress levels have plateaued. So, do I push through, get back into running or take it slow and easy as all the runners (forums) tell me to do? I guess, I belong to the phenotype that can, cautiously, push through.
🎉 !Welcome back, Gez! 🎉
What kind of IVs are you getting?
Let’s not forget the genetic inherited or acquired MTHFR snips which may predispose to a constellation effect
What if you have both? I had Covid pneumonia in November 2020 ICU for 10 days. Dx with long covid aprox 8 weeks later and then one year after that everything changed and I was Dx with ME/CFS summer of 2022. I also have hyperventilation syndrome with mild activity. Found out I had 5 latent viruses reactivated and am on a very long course of antiviral medication.
What are the tests to find out latent viruses activation?
@@geetikamalik5521 antibody profiles for the viruses. Your GP could order them or your ME/CFS specialist
What tests can be done to confirm. I feel I'm in both groups?! I have dysotonomia (orthostatic hypotension due to overreactive parasympathetic system, causing vagual syncope with convulsions) & pem can be same day or be delayed and last from a day or two to weeks bed ridden, from a simple "task/activity" like cooking a simple meal with all the energy saving gadgets sitting down, once or twice in a week or cognitive effort to fill documents.
Thank you for your great content! I observed that it can vary and change in individuals itself. There are phases some symptoms recede and others are more at the forefront and it changes. From 4 hours activity to 0 and back and forth over the years..
Group 2, ouch ouch! Movement is critical, but I’m finding I need to give my body rest in between to build muscle (slow). Now if I do some yoga 2x per week, I get stronger. Whereas if I do a tiny bit daily, I tire and then progress stalls. Slower expansion = faster progress.
Also it pays to schedule your movement with your cycle if you’re a woman. Get your movement in the first half of your cycle and in the week before, when you’re feeling shitty, you can take it easier and rest more.
And I think some elements of sports training definitely apply but on a nano scale!
Try movement on vibration plates. The additional circulation helps a lot. You may only be able to sit on them for a few minutes at first but it helps. I can exercise much long on vibration plates and even used to do my yoga on them. Also try red light post any kind of activity. It helps recovery and ATP.
Do you still take the h2 blocker gez?
Great video. 1st group here most of the time. Exercise intolerance that appears at the end of exercise, that's my signaling to stop, then the worst part of intolerance reach it's peak 1 hour later. Then it starts to get to baseline.
Intolerance ranged from palpitations, muscle weakness, lightheaded, low blood pressure.
Altough one time I pushed and pushed and actually crashed for a week. So I believe type 1 can go to group 2 if they really really push too hard. But they can recover go back to baseline easier than group 2. Type 1 takes much more exercise/stress to reach a sever crash, and are much more likely not to worst their baseline permanently.
Interesting my exercise intolerance got better with a colonoscopy. Gut cleaning related?
I am now much less exercise intolerant Slowly Increasing exercise help me actually. I can build up more and more. Sometimes now I almost feel like my old self.
Dancing is much better than walking for long period of times. I improve my baseline faster with dancing that walking. I suppose that there is a more profound mitochondrial and immune system benefit in dancing than walking. Also dancing makes your legs helping pumping the blood thought your body.
Thanks for the great comment :)
Over 4 yrs now and in group 2 with dysautonomia and getting harder and harder to do anything
Me too.🙁 So sorry.
Personally I think the trigger for ME and then dysautonomia is stress to a susceptable body.
I had glandular fever/mono 2019 and knew I could not excercise.
When I did start I got PEM (even though I did not know what this was at the time) stopped exercising. Got better and eventually started slowly again and I fully recovered.
With COVID I did not have advise of the dangers of exercising too soon after COVID. I started getting pem but did not pull back.
Therefore I now have severe ME and dysautonomia.
I also wonder if FND has relation to long COVID neurological or dysautonomic issues?
Thanks for keeping going with research and fighting the good fight Gez, good your back again, gives me hope
Very good question about FND's relationship to ME. Dr. David Putrino at Mount Sinai Post Acute COVID-19 Program gave an interview somewhere where he says they can co-occur, which has been my partner with ME's experience.
He says it's important to distinguish that FND does not cause ME, but FND can arise as a secondary complication from the stress of ME.
My partner has also found that FND symptoms can trigger ME symptoms. And ME symptoms can trigger FND symptoms. It can be hard to tell which is which if you have both, especially since both can cause dysautonomia including neurological symptoms.
FND symptoms tend to come and go abruptly when stressful emotions come or go. Sometimes they diminish if he tells himself he knows it's his nervous system trying to distract him from stress to protect him. Sometimes they don't.
ME symptoms come on following a crash, but a crash could be triggered by exertion, overstimulation, or the the same stressful emotions that trigger FND. They tend to last a few days or weeks after the crash and sometimes diminish with rest. Sometimes not.
I wish I knew more.
@@alexba1ley thank you very much for the information here.
A lot of people with long COVID type ME/CFS and dysautonomia have neurological issues too so it's good to get some information on the similarities.
I guess a neurologist would be best to diagnose if FND is also the diagnosis?
I am most definitelly in the delayed simptoms group. Since being treated for MCAS I have enough energy to exercise and at the time and shortly after it will even feel good but starting the next day I will have 2 to 10 days of horrendous GI issues and POTS. It seems to depend on intensity most strongly, I could walk for hours without an issue (If it is a good day), going to the gym and doing static bike for 10 minutes at a moderate 140bpm will cause quite a lot of issues but a single set of 15 deadlifts will fuck me up massively and it will likely last 10 days.
How was it treated MCAS.?
How was it treated MCAS.?
@@user-heaven._ Mostly the standard first line MCAS treatment. Chromoglycate+h1 antihistamine (desloratadine) + h2 antihistamine (famotidine) + low histamine diet. The big improvement started when adding the chromoglycate. Salt disolved in watter helps POTS acutely. Pacing activity prevents issues. I take a ton of other things that help a bit like choline, sulforaphane, siliphos, quercetin, zinc-l-carnosine, potassium citrate (when sodium doesn't help), harpagophyte but compared to the first line MCAS treatment it is just a drop in a bucket.
Is there any hope for recovering in the second group? Is there any link to spike protein?
Absolutely yes there is hope. Re connection to spike protein - not yet established in research, but likely.
I am in The second group.
For the group with delayed symptoms, the sports science approach of Prof Dr Dr Simon / Sport University Mainz /
Germany (UA-cam video of Dr Weiss) could be a solution. 30
seconds of activity - 30 seconds of rest. I've already sent you the link. An interview with Prof Dr Simon would be
Hello Gez. Just wondering if you or anyone experience has experience car intollerence? If i have to run a bunch of errands i get the shakes. I also notice sharp pains in different areas in my body. Also it makes me feel short of breath with heart palpitations. I dont really get these symptoms when i lie low at home.
Hell yes, driving eats up a lot of energy. Cognitive, physical, environmental all combine to suck the energy out of you at a massive rate. I had to stop driving and if I absolutely must go somewhere by myself ( my mom usually drives me now God ) I am absolutely drained when I get home and take a long time to get back. My chronic disease is specialist suggests not driving as much as is possible, and applying for a disabled parking pass so at least you're not walking on top of all the energy expenditure you just did driving. Honestly I think it's just better to stop driving, because I can't tolerate the thought of something I miss because I'm overly drained or not paying attention and I hurt someone.
Wow! This insights are most interesting and so important. Thank you so much for that, Gez! It makes a lot of sense to me.
I'm a physiotherapist working with people living with Long COVID and I myself am living with ME/CFS, which gets triggered almost exclusively through physical activity. I have a strong exertion intolerance with dysautonomic symptoms (Dyspnea, Palpitation, Heart rate and blood pressure rising, exhaustion) during physical activity and about 12h lasting and the PEM (Hangover, Fatigue, Pain, Malaise, feverish) which starts 12-36h later. Both feels as two very different groups of symptoms, which I can easily separate.
Could you please write me the Citation of the paper from Carmen Scheibenbogen, you are referring to? With ME-Group and Dysautonomia-Group? I would be very grateful!
I Think I found it- thanks anyway: Legler F, Meyer-Arndt L, ... Scheibenbogen C, Bellmann-Strobl J. Long-term symptom severity and clinical biomarkers in post-COVID-19/chronic fatigue syndrome: results from a prospective observational cohort. EClinicalMedicine. 2023 Aug 19;63:102146. doi: 10.1016/j.eclinm.2023.102146. PMID: 37662515; PMCID: PMC10469383.
It’s linked in the description of the previous video I made - can’t paste it into comments as UA-cam doesn’t allow!
Hi Gez, How's your long covid recovery has been? Are you recovering? Thanks for all your work!!
Navigating the plateau prob a more accurate description than recovering!
I've struggled to find a link between life style and symptoms because of this delay. I know there is a delay with symptom onset in myself of 2-3 days but so many variable happen in the prior few days it can be hard to tie it down and isolate the variables. I would love to find the exact cause of my intermittent insomnia i've had since covid back in late 2020.
Group 2 represent! 18 months in and my energy envelope is still 60-90 minutes, less for multi stressor situations. My connective tissue seems like its starting to be friable at joints and Im getting hypermobility. Am i just being anxious thinking this is seeming degenerative?
@sarahbeuhler3567 listening to recovery stories on a regular basis has been helpful for me to keep the anxiety spiral under control. I like Raelan Agle’s channel a lot.
Legend :-)
Haha, thank you Fionn!
I don't neatly fit into either. I feel pretty bad at the time amd awful afterwards. I've nearly fainted while walking a short distance so taking more exercise is a no go.
Quite common to exist in both groups - normally here group 2 takes priority. Sounds like you’re definitely dysautonomic though!
That's my feeling more and more. Now to convince my physician!
God I hate this grouping bc it leaves me feeling isolated.
I’ll get some symptoms immediately during or after exercise to the point I must stop, than a day later I’ll get the massive fatigue sore throat and headaches, and if I crash hard it won’t be till 48 hours later. Not only that but sometimes I’ll just get one and not the others.
Not sure what group I’d be in /how many other related?
he said you can have both. You're included!
You’re both, but group 2 takes precedence as it means you need to avoid crashes and spend spoons v carefully
But… couldn’t it be both? I am diagnosed with POTS but I also have PEM. So I think in my case the problem is autonomic but also metabolic. Also… what works best for the PEM group?
Group 2 people will frequently also suffer from dysautonomia - so yes you can be both. But group 2 takes priority due to the severity of PEM.
I have tinnitus, anxiety, dizziness, but i never had activity intolerance. Is it possible I'm on a third group?
Yes - there are likely to be 5, 6, or even more groups. But we see the majority of long haulers in groups 1 and 2 (they’re all non-exclusive though!)
Your anxiety and dizziness are likely dysautonomic in nature - so some of what I was saying about group 1 does apply to you.
@@Vicky-ev7hs Thanks for references!
Vielight looks interesting for the amount of research they've done in various scenarios, but there's also commercial interest in their research. Would be nice to have some non-commercially interested orgs or people reviewing it :)
Mine affects me at the time them 48 hours later I crash
I think I am in the first group, but if it takes a couple of days to catch up, does that mean I am in the second group?
It does
sir, im soon 3 years in, will it be treatment soon?
I'm in a long covid clinic in Wales. There is no treatment so far and the woman I spoke to said that's not happening any time soon. I'm very disappointed.
@@janejenkins5137 damn..
@@janejenkins5137 wow...for real...
There are people who have completely recovered
So I'm type A. After a walk to buy groceries I crash for about 5 hours. So I "can" exercise BUT.....
I find that also,sometimes I'm afraid to have sex and have an orgasm because a day or two afterwards i feel like I'm dying,all my symptoms seem to get soo much worse, its ruined my life!
I made a video talking about the impact of LC on sex and relationships
Wow,thanks I'll check it out!
Long Covid should be scaled on a severity scale. I read many doing running, gym training etc.. and still call themselves ill. Some of us cant even tie our shoelaces witout the risk of a total neurological meltdown. 2nd group here for 4+ years now. Breathing difficulties and other severe neurological dysfunctions 24/7. At this point I dont se that healing is possible.
There are some scales of severity for ME/CFS that are very applicable to Long Covid.
@@RUNDMC1 Thank you for your work Gez. At the moment I would be happy if my doctors actually knew what Long Covid was. The LC community is well informed, but that is about it.
It’s important to remember that with a chronic dysfunction of the Immune System, such as Long COVID or CFS/ME, many pathogens, such as the Epstein-Barr Virus or the Chronic Lyme Disease Spirochete may come out of Remission to start new infections which may have symptoms similar to Long COVID or CFS/ME. There may also be increased susceptibility to Environmental Toxins and Molds that complicate these diseases. There may be multiple layers of infections and toxins that increase the severity.
I believe the severity of Vaccine Injuries, Long COVID, Chronic Lyme Disease, Fibromyalgia, MCAS, and POTS depends on:
1) How compromised and dysfunctional is the Immune System and
2) How many different pathogens coming out of Remissionn and what Toxins are currently affecting the Body.
What about a better name like Vaccination suffering?
Long covid permanent disease or temporary?
Lots of people are recovering, but there’s no way to predict when or if that will happen for individual sufferers
Look at jab injury instead.
First thing is to stop taking those damned boosters. The first rule of getting yourself out of a hole you dug, is to stop digging.
I'm searching for anyone that has long covid and is unvaccinated?
Anyone ?
About 1 million in the UK buddy. Anyone who developed LC after a first wave infection all the way up to delta. Including me.
I did not do this and I have LC 4 years of suffering 😢
I did not do this and I have LC 4 years of suffering 😢
Antibiotics ruins lives.
Great to see you back Gez!!!! 🫶
Thank you!
Gez! 💙💚🩵
Thanks Christine!