What Improvements Can Autonomic Conditioning Bring in Long Covid? | With Dr Jenna Tosto-Mancuso
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- Опубліковано 14 чер 2024
- In this second of our two part series on autonomic conditioning, Dr Asad Khan and I talk to Jenna Tosto Mancuso, physical therapist and clinical director at the abilities research centre at Mt Sinai. We ask her about whether movement based autonomic conditioning can help other forms of dysautonomia like GI issues and temperature regulation, how important it is to understand the issues around exertion for long haulers, and what kind of improvements might be expected.
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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. A singular resource that brings together everything patients, clinicians and academics have learnt about the condition to date, as well as lessons from sufferers and researchers of ME/CFS and other chronic conditions. It offers world leading expert advice on understanding, managing and treating Long Covid. It is available from the following links.
US: a.co/d/0gvkJCU
UK: amzn.eu/d/9KjurGb
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I know this was discussed in other videos but... If you are ready for autonomic reconditioning remember that mental exercise uses up how much reserve as physical exercise. The balance of how much energy you have changes constantly so being aware of what is going on with your body is hyper critical. I have found that when I am "going down" I can lay down, or sit down, with my eyes shut and breath thoughtfully for serval minuets. This often resets the downward spiral, then I can reduce the effort of life and continue on while being very careful to balance with in what little energy I have left.
Excellent point
True as the brain uses massive amounts of energy, I remember prior to getting sick, back when I was working in the trades being fatigued normally fatigued after a hard day's work, however when studying I would get unbelievably fatigued after just a few hours study. So yes it's so important to keep resting the brain as often as possible. It needs to be pacing too
@@RUNDMC1 I wonder if you are using your brain too much Gez? I wonder if you are like me who says " just 20 more minutes" but an hour later find yourself saying the same thing lol. I believe my brain is causing PEM. I do rest it but not as regularly as I should. I found if I change from writing to listening that helps rest specific neurones. Or stop and have a cup of tea and go outside for 30 mins. finding a pleasant diversion, then back to the main task. I actually get more done as don't trigger the crash. The problem is having the discipline to take those regular mandatory breaks for the brain
@@brobinson8614 You are absolutely 100% right. I’m terrible at giving my brain breaks (it doesn’t like them and gets bored). This is the logic for breathwork and meditation but I’ve got sloppy recently and been much less disciplined
@@RUNDMC1 yes, also try changing the activity to areas of the brain you use, from out put to input, as the tired neurones need a rest, and theres plenty of other neurones ready to be used. I often switch to an interesting podcast or audiobook (like Silo haha) to stop the boredom, even turning on the news for a break from writhing, as it all defiantly rests the output part of the brain
But Ideally like you say is to relax and meditate is best, but not always possible.
Gez, thank you. Your efforts to learn all that you have over these three plus years is greatly appreciated. Your comprehension of these medical / health and life issues exceed many primary medical providers. Thank you for finding these experts and making these important videos. You are doing an amazing job!
That’s so kind of you, thank you Leslie!
I've had COVID four times and recovered from long haul twice. But just got the new Eris variant and it is kicking my butt. Fatigue, ear fullness and tinnitus, brain fog, GI symptoms... and paxlovid is not helping either like it did with previous XBB variant.
She is attempting to bridge a huge gap within the community of ANS… the gap between traditional therapeutics of PT and “alternative” therapeutics. It’s tough.
The many modalities of “Brain Retraining” that are considered non traditional incorporates and expands what now traditional PT embraces such as Breath Work”, “Vagal therapeutics”… not just CBT cognitive. Finding the sweet spot between sympathetic and parasympathetic and how to switch it. How the individual can switch it to regain control of their mind and body and sensory.
Today neurological is beginning to embrace implanted and external neural stim mechanisms that do this switch… such as Deep Brain Stimulation and even wearables. It’s basically retraining the neural pathways yourself with brain retraining or having it done with a device implanted or worn or held and utilized by the individual.
It’s a step in the right direction to attempt to bridge this huge gap and cull out best practices.
The challenge is we have diagnosis such as POTS as a hierarchy and ME/CFS and EDS and Parkinson’s and Lupus and many other autoimmune conditions as all being different and desperate yet they are in my opinion just different body parts of one Autonomic Nervous System condition. Doing what medical does…. dividing the human into sections and treating and naming and labeling each section and not being holistic and considering that one is driving the other.
The ANS is the wiring and signaling and driver of ALL things within the human. It ALL does a feedback loop the body to the brain the brain to the body and remedies and therapies and diagnosis needs to focus on how and why the loops are feeding back what they are feeding back and how to regulate vs arguing and denying you have a real feedback loop dynamic at all other than anxiety and depression and neurotic psychosis.
It’s like the doctors all have a license to drive the car and know how to work on old vehicles but not the new ones with sensors and feedback diagnostics and automation. And yet ALL the cars today come with that wiring. They need to either update their credentials and certifications to be able to work on these vehicles or get out of the shop, get out of the business.
Kinda like thinking your 80’s DOS programmer is going to fix your latest and greatest Apple device when all they have fixed and learned and worked on is an old DOS based PC. Not a match!
She is trying. God bless her and Gez for trying to bridge some huge gaps 👍👍
Great comment - thank you!
Interesting analogy- thank you
Tough topic, pacing: so glad you keep driving it home. But I feel as if I'm the only person on earth concerned with improving my symptoms--and left up to me, I keep falling back on pushing too hard. It's what used to work.
Wish there were PTs everywhere who "got" this.
Yep, it’s so hard isn’t it?
Thank you once again Gez for all that you do for the LC community and bringing in so many experts helping to shed some light and insight on to our precarious predicament- 👏👏👏👏👏Loving the youtube shorts too 👏👏👏XOX
The biggest change I found was in pacing, meditation and staying calm; talking uses a huge amount of energy, watching noisy TV, emotions, our brain uses 20% so understanding this helps ration out how we use it. I walk slowly most days and practice living Being in the Now, cannot go with someone because talking makes the whole process overstimulating. I changed housework for walking - have a Robovac and minimal lifestyle.
I love you all especially my fellow LC sufferers ❤
I am grateful to have escaped COVID and most especially Long Covid. I'm here because I recognize it as a huge problem, and one that can only be overcome with more learning and more breakthroughs.
....and we love you back!❤
Love you as well ❤ Coming together ❤Never Alone❤
Another very informative video that should be a great help to LC sufferers, making it clear once and for all that formal exercise is not the way to go but everyday 'movement ' what our bodies are designed for, can be used as rehabilitation in itself. A lovely cheery enthusiastic therapist, as well ! Great job, Gez : )
Another useful interview/perspective. It emphasises the need for individualised approaches that operate within realistic personal limits. Also the need for tailored support which is just not available on the NHS or even privately to any extent. Really important to recognise that 'one size fits all' does not work with long covid. We are all becoming experts in knowing and recognising our body's needs. It requires real discipline, determination and resilience.
Absolutely 👍
Really appreciated this feedback and your update about what you're dealing with Gez. So sorry its still affecting you but you have obviously come such a long way. Thanks to Dr Khan too for his valuable input. Loved the kind and gentle recommendations by your contributor all much appreciated 😊
Thank you!!
@@RUNDMC1😊
JENNA spoke (to me) in a way I was really able to hear, as if she truly understood how suddenly we can reach our limit. When just moments before all seemed fine.
Having LC that manifested via a mast cell/anaphylactic trigger, facing possible sudden death on a daily basis is pretty surreal. Thank you Jenna for your understanding.
Oh Dr Wes Ely is brilliant, glad you’re going to have him on! I love his interviews on preventing patients who are in ICU going on ventilators, or greatly reducing how long they’re on them. And getting them to move, and be alert sooner the better to prevent post ICU damage, brain damage and trauma!
GEZ, you're doing all the important work that should be done by
"The system"
Your reward should be the Nobel peace prize...or at least a sizeable piece of it!!
It's nice to see the younger docs getting involved
Others may have asked but I think a master list of LC friendly providers would be fantastic.
Don't expect a physician to get it. They only go by the book and their book is way off target. Gez has assembled the only authoritative resource on long covid. Follow his advice and avoid being a pincushion for a hack.
Don't forget intermittent fasting!
I'm skeptical, if autonomic dysfunction is driven by micro-clots (for example) then how would autonomic conditioning help or make a difference? I've continued to walk my dogs and be as active as possible, but I don't see conditioning as a path back to health for me.
I think it’s more likely that dysautonomia and microclots are parallel conditions rather than one being directly causative of the other.
Gez, can you share a link to an outline of autonomic reconditioning?
There is no one in Sweden who can guide in this regard so an outline would be great.
Thank you!!
I have noticed that this autonomic conditioning that she spoke about has done exactly what was mentioned. More stabilizing of my symptoms. This has definitely been a nightmare and I love the information here, it offers hope. Thank you
Thank you for your work Gez, just starting on your book a chapter every other day. In one of your other videos there was a quick comment on the only people you know to have recovered quickly have gone away for a few months. It is the only thing I have ever seen or heard about someone recovering. Wonder if that is something you do a video on at some point?
I’ve come across this a couple of times. I think on one of these videos someone went to warm Mediterranean and felt better. And another couple of people reported feeling better going abroad - even after long haul flights. Break in routine? Less stress? Less vigilant about symptoms as your too busy in a new environment?
Pacing and expecting rapid declines in energy and endurance make anticipating crashes easier to navigate. Pputting yourself in situations where physical, mental and emotional stress is minimized helps slow the degradation. Having access to warm lightly salty water also makes energy depletion easier to manage. I have found that breathing through my nose with my mouth open (gaping) sets up a reboot for vagus symptoms and gut distress that triggers mast cell to attack other bodily system, muscles and nerves.
Hey Gez, again thank you for all you do.🙂. March2020/60/70% better depending on the day.With so many theories of cause of long Covid and pathways affected I’m wondering do they all potentially fit into the timeline of initial recovery feeling fine and then in my case 3/4 weeks later not fine! My mind keeps going back to the crime scene to try and understand what happened in that 3/4 weeks so I can better understand what went wrong. I feel the further I get from it the more muddied the waters. Love to all🥰
Totally understand that feeling!
I wish you wouldkeep including me/cfs in your vids.i worry we are being left out of all of this new information.
Heck, when i got me/cfs in 1993, we were all told we were crazy
1993 that's a while back. What, in your opinion; is the most helpful advice you have received from the doctors? What is the most important thing to do or avoid doing to improve your condition?
Hello I have GI issues when food is digesting the heart works hard over 100. laying down heart palpitations standing or walking very slow upstairs heart rate is higher .
Me too, when I eat my heart goes crazy.
Due to pots all blood going to digestion. Eat less with more freq.
I had that same problem six to eight months ago I have this dysautonomia pots my doctor recommended compression socks and my heart doesn't do that when I eat no more
@@alperenylmaz1344 yes I agree eating less help but you still feels it
Brilliant interviews, very grateful. Thank you so much. I just wish there was a resource for people who do not have access to autonomic conditioning therapists or unable to afford it.
Do you know whether they are planning to put any of their information or exercise plans into the public arena?
Hi, can you pass on information to me as to which clinics (in Germany of Cyprus etc) carry out apheresis? Thanks.
I very recently got my diagnosis of LC, after suspecting it for a few weeks and suffering the symptoms for about 8 months. Something I will say, as my doctor's prescribed an ANS re-conditioning work routine, I have felt a lot of anxiety with an accelerated HR. But the more I do the work, the more stable I feel. So there's something to be said there for trading short-term discomfort for some long-term comfort.
Careful if you experience PEM several hours later or the next day - definitely need to be careful if that’s the case!
My symptom flare ups definitely are reducing in severity and length over time. I have triggers too. Heat, being busy, stressing my core, stress etc. I have improved by getting a personal trainer to make sure I build core strength. I’ve learned to climb stairs, I have lengthened the distance I walk.
For coordination I took up drum lessons. That is harder but I am improving slowly.
I have rebuilt some social connections.
I pace everything.
Friends help with that too.
I think you are fighting covid which I think is the wrong approach over stressing your body to make it seem that you're ok you're ok.
😅We used the ArtemiC Rescue and ArtemiC Support combo, and it worked well for us for both short and long covid. You can find out more by typing it in.
For either covid or long covid:
ArtemiC Rescue is a pump spray, 5 pumps in the morning and 5 pumps at night at least a half an hour before eating. After 2 days the bottle is finished.
ArtemiC Support is a pipette, 0.5ml in the morning and 0.5ml at night at least one half hour before eating. After 30 days the bottle is finished.
What can Help when you are too sensitive for this? I can't stand any light noises or people around without Atvian. Is it only Rest? Cheers
Yet again incredibly useful content from you Gez - have you tried nicotine by any chance? And how you doing in general at the moment??
What would've been interesting to hear is her experience with medication. E. g. can drugs to lower HR help being a bit more functional during the reconditioning to drive the progress home? Does it obscure perceived exertion? Or maybe it's even as bad as getting the ANS to calibrate to a "false" (because "artificial") baseline?
And should well-medicated patients start progressing with exercises or rather target to keep a level of activity while reducing dosages (while consulting their doctor, of course)?
Obviously, all of this isn't one-size-fits-all either, but an informed view with a lot of experience would go a long way to get a feeling for these things.
How are you doing gez? Have you been able to run again and get back to work?
Gez… Can you consider hosting Marie Claire Seeley from Australia and her patient study conducted looking and comparing POTS to Long Covid ? She did an episode on StandinguptoPOTS that was enlightening. Cheers!
Over working causes a lot of flare up
Sure does!
How am I supposed to pay the bills?!
i think the word "movement" is key, I find ill suddenly feel my chest get stiff and sore and I'm able to stretch it out with simple yoga and basic movements. Exercise also has movement in it and, most of its benefits stem from the movement aspect of exercise. I think that's where the confusion comes from because exercise is movement but movement is NOT ALWAYS exercise.
Movement increases blood flow and nutrients, exercise drains it
I have had symptoms so debilitating that all I can do are eye exercises to reboot vagal response. Moving and massaging mast cell attacks only makes them worse for me. Not responding but drinking my warm lightly salted water and lying down are my only recourse.
What is with the stiff/sore chest. I know now not to stress when it kicks in (heart attack??!?) but least favourite symptom!! Sitting with a heat back on breastbone currently
@@taragunn9400 I always thought my heart was f*#king out but all the tests proved otherwise. I used to get wierd clicking sounds in my mid chest as well, but they gone now.
I tried a heavy 40 mg anti acid and all my symtoms have gone, including all the ramdon ones. I can't explain how an anti acid can stop a pain in my calf muscle that I've have for more than a year?!?
@@marky5493 oh weird. I got/get leg pains and chest pains together. I put it down to micro clotting as aspirin helped both pains
@@taragunn9400 yip it is blood clotting as well for sure but I think that's symptom not a cause. I've been on clopiwin, elquis and asprin at the same time, and it helped tremendously but, it wasn't a cure if that makes sense.
I used to wake up and feel as if I'd been on the losing end of a bar fight every morning for months!
I'm sure they gonna find, that LC is linked to the small intestine in someway.
I've got my theory at least, I'm my own Guineapig lol.
In fact you're proberly better at figuring your health out in this instance than your docter as you can FEEL the affects of whatever to try to do more than the docter
Hi there, any chance of an investigation into BC007 and it’s mechanism of action.. seems to be the most satisfactory explanation for long Covid and a cure
The research for it is taking forever, so until it’s even got a hope of being available there’s not much point razzing everyone up about it. It’s fughazi!
Was really looking forward to specific GI stuff. Not even touched on except to say may improve GI symptoms. Is there another video coming for GI symptoms or is this it. Struggling so much and constantly getting told there's nothing more we can test for/do by GPs if I knew what to tell them from others that have been here already it would really help. They keep looking at me like I'm making it up, surely the 25kg weight loss would clue them in that something isn't right. On the waitlist for Gastroenterologist. Can't tolerate Omeprazole (severe paralysis type anxiety) and nothing else stops the acid. Have tried most of the PPIs a well as famotidine. Can't count the number of psych referrals I've been offered when I tell them the PPIs cause severe anxiety 😢
There is a lot you can do to fix your gut. A lot of supplements are available that you can try out. And you can start by simply drinking some Yakult and by getting rid of all mushrooms, cheeses, bread, beer and other sources of mold and yeast and by reducing your sugar intake.
@@teddybearroosevelt1847 I'm not currently able to eat at all, dairy products, fats and breads were the first foods to go. I don't drink cola or caffeine, nor do I take alcohol, I didn't do any of these things even before I got sick. I can't consume sugar as it is so acidic. Naturopath put me in Candida diet a long time ago but I couldn't tolerate anything on it. I'm currently fasting to try and keep symptoms at bay but sicker than ever. As for supplements I can't tolerate Yakult (dairy) not can I tolerate any other fermented product, it just BURNS. I have tried slippery elm and marshmallow root to no avail. As far as "things I can try" I am absolutely doing that, I'm looking for someone who may have tried things and had some success.
@@skyerobinson4148 It sounds like the biggest problem at this stage is finding a doctor who is prepared to take on such a challenge. Front line doctors are trained on how to use established techniques to treat well understood pathologies. You may have no success outside major clinics that have branches that deal with such things as this.
I have mentioned before that, as a non-LC sufferer, I am drawn to the subject because it is a major disease process that is in freefall, even after three years and counting. It is no secret that your own path has a very dark future, but doctors whose jobs involve diagnosing, treating, and well-wishing are not likely to be much help.
Have you tried a low acid / high base diet? And additional alkaline drops etc - Talked about that in a recent video.
I don’t know for sure, but might you have MCAS? Research MCAS for best diet. (Mast Cell Activation Syndrome). All the best to you x
i wonder if swimming can qualify as a supine movement and if it would be beneficial?
Yes it would, assuming you can tolerate it!
I was told by my breathing physio that yes swimming would be good but the problem is getting to the pool getting undressed, drying oneself and getting dressed again........
Could Central sleep apnoea be an autonomic nervous system thing?
Yes would make sense
I was diagnosed with CSA issues after my long COVID started. Never in my life had sleep issues till now. The sleep tech thought the exact same thing because it's based around the body not communicating properly to breath vs normal sleep apnea which is based on obstruction of the airways.
@@szaw4452 I was waking up severely out of breath. It was very scary to go to sleep. I started taking magnesium before bed and that completely fixed the problem.
I also have a sleep apnoea. First time ever. 3 years now. I wake with low O2, high hr and vibration about 5x per night. Improving at a glacial pace. Trying CPAP in Oct. Sleep study said (in a snotty way!) don't l lie on your back. I explained that I don't: I wake with the above symptoms and then remove the bed covers and lie on my back to cool down and do some deep breathing. I wasn't listened to😢
i wonder if i have a form of long covid. after what i think was a covid infection, i've been having pain in my legs and it seems to correlate with increasing vascularity. it started in the back of my left thigh and slowly has spread throughout most of my left leg and much of the right as well. it seems to flare up most after eating, and the larger the meal, the more intense it is. elevating my legs helps a lot. however i don't have any breathing issues or brain fog. i do have some chest pain, but i've had that for a couple of years now. does anyone think this could be long covid, or is it something else?
Did you get vaccinated? My auntie developed varicose veins after the vaccines...I've often wondered if it was linked. She was fine before
@@oliverbird6914 nope, i'm unvaccinated.
@@succ6031 no idea then. Except look into nattokinase...ask your doc but it's a natural blood thinner. The Japanese use it. Helps break up clots
Oh Golly, I'm going to have to move to New York if I could get an appointment and empty my pockets. Good thing they aren't in West Virginia, because there I would have no chance.
It’s same as graded exercise. This is what I understood
Most definitely not the case!
She covered that it wasn't in the first video.
She stressed that it is symptom-titrated - whereas GET gets that wrong by not listening to the patient’s symptoms
Breathing is that scientifically tested ?
Vitamin D3
Great to see the cute physio again
There's negative feedback about this because it doesn't seem to be a legitimate concept, or if it is, anything more than a hypothetical one.
What is autonomic conditioning? Is it breathwork and gentle exercise? Is it a specific method or program of those? Is it just the notion of doing those without pushing through discomfort?
Because if that's all it is, then it doesn't need that name. Don't pretend like it's something novel and compelling. Everyone and their mother will tell you that "movement is good for you, but don't overdo it". Don't call it a concept and don't pretend you know more than you do.
Gez you are entirely too credulous with this woman, she speaks almost entirely in cliches and jargon. There's no substance at all.
There’s a specific program which is customised for each patient. ‘Don’t overdo it’ might sound straightforward but really isn’t if you’re suffering with LC. And how to know what you should / shouldn’t do? Hence the role of autonomic conditioning
Really said very little. Skirted around pacing and activity. And of course isn't giving away any how to... hmm
has gez been vaxxed?
What’s that got to do with anything? I developed LC in March 2020 a year before you could even get vaccinated.
Totally irrelevant to those of us who had long covid before vaccinations were available.
@@RUNDMC1 It would be kind of interesting to know if getting vaccinated has an impact on symptoms. I am unvaccinated and have wondered if vaccination might improve things for me. Then again, might make it worse....
@@spiffffffffff look at my vaccination reaction survey films i made - the only data you’ll find anywhere to help you make this decision!
whole lot of nothing useful said.
I think this is becoming a common theme for long covid videos; unfortunately.
Try this try that, don't try this don't try that, this has shown to be successful for some people and not successful for others, this might help but then again it might not. Don't do this because some people have found it to be very bad, although some have also found benefits.
I wonder if they are not all looking at night in the back garden for the keys they dropped in the front garden, because the back garden is the only one with a lamp.
I'm sorry but she didn't explain anything.