How Does Autonomic Conditioning Work? | With Dr Jenna Tosto-Mancuso
HTML-код
- Опубликовано: 1 июн 2024
- On this channel I have previously discussed the complex relationship between pacing, pushing and autonomic conditioning. In this video Dr Asad Khan and I talk to the expert - Dr Jenna Tosto-Mancuso, a physical therapist and the clinical director at the abilities research centre at Mt Sinai.
In this first of a two-part series, we ask her about what the principles are behind autonomic conditioning, whether it’s suitable for everyone suffering from Long Covid, and exactly what it might involve on a practical level.
------------------------------------------------------
Interested in my second channel?
Here are some links!
Why Strange New Worlds is the Best Trek in a Generation:
• Why Strange New Worlds...
5 Reasons Why Top Gun Maverick Crushes the Original | Film Director Breaks it Down:
• 5 Reasons Why Top Gun ...
Why Succession Shouldn't Work at All, But is Somehow the Best Show on TV:
• Succession Shouldn't W...
-----------------------------------------------------
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 
Наука
I'm an ME veteran who got POTS following Covid. Whilst this is great information I'm dismayed how this translates to point of use. When I asked for a referral my GP argumentatively insisted my tachycardia was 'women's problems' (hormones are fine) and then insisted that Long Covid treatment was no different to my historic ME treatment (ie authoritarian, ignore your symptoms CBT and Graded Exercise Therapy). My NHS physio just discharged me because there's 'nothing more we can do'. 30 years ago my ME recovery was almost 100% DIY. My Long Covid journey is going to be the same. I have 100% faith I can do this, but I'm amazed how little things have developed. Perhaps it's just my experience. I hope to God it is. Thank you Gez for making it easier to do the research this time around.
Sadly we’re still waiting on a major shift in primary care treatment. At least the NICE guidelines have finally changed re PACE trial and GET. Hasn’t filtered through to all doctors though!
How did you do things with ME to get you through and past it, would you be willing to tell please?
Hi@@yl1487 firstly it's important to define what I mean by 'recovered'. I don't mean I returned to my old life. I still lacked full energy and struggled to maintain consistency in my energetic spurts even when I'd 'recovered'. I did however substantially improve compared to my early days. What anyone needs to do to heal their own ME will depend on the numerous contributing factors that personally created theirs. Unfortunately it's an individual puzzle - with some universal aspects. I'm sure you've heard of things like pacing and this is valuable to prevent the peaks and troughs. My route into ME was viral and trauma-based so I tackled that through diet, supplementation and therapy. Brain training has merit, but I found it rigid, superficial or introductory and much deeper work was needed. I also have EDS so spent time slowly building up my strength with yoga. I addressed my habits and beliefs that contributed to anxiety, burnout and not being my own advocate. I cleaned up my relationships and addressed codependency. Recovery this time around is similar, but different because I'm quite a bit older. Right now, ozone therapy and spirovital therapy is helping. It's best to reframe this as a journey or an adventure with moments to relish rather than something that has to be fixed and nothing can be right until this is fixed. I wish you the best of luck 🙂
doctors suck. healthcare is only about money.
Another tip for dysautonomia is to have a bed that you can elevate the head end 4 to 6 inches, and lay on that. it creates a slight pull of blood to the feet and the body should recalibrate the blood vessels to slightly contract, without going into that crazy over reaction when sitting or standing. Be aware the very severe this may cause too much exertion. So try much shorter periods. I tried this, seemed not to cause any problems. and I notice I can now sit upright longer during the day.
Question: How many of Dr Jenna Tosto-Mancuso's patients who are long term (like over a year sick) actually get better? Thats a key question that needs asked, as I see these statements by others and then it turns out the recovery is no better than those who recover naturally.
I believe what she talks about maybe better for the less severe Long Covid and ME/CFS patients, mild and moderate. As severe and very severe patients cant even handle a trip to a clinic. As that in itself would be too much exertion.
Anyway I do very small amounts of light short exertion lying down to avoid deconditioning. but sadly no improvement from that.
The disease is very much related to how soon PEM triggers, some people are so bad thy are permanently in a state of PEM from the cellular exertion of breathing and and their heart beating. Others have lots of headroom before they trigger PEM
The day is always a little brighter when a new video is posted. Look forward to the next installment. Thank you Gez!
Haha, thank you!
More valuable information. Gez you've played an irreplaceable role in all of this. Thank you for your persistence in serving others!
Least I can do!
Most people who recover this way figure it out themselves outside of mainstream medicine. So the success rate of this method IMO is far greater than what’s officially reported.
Thank you, this is a humane approach for people who have become accustomed to suffering for trying to exercise and are afraid to try, or simply can't make the effort due to malaise. I look forward to the next video.
As a long hauler of ME, 28 years, I developed Orthostatic Hypotension after having very mild Covid during the first wave. I've never been able to tolerate anything mildly aerobic however I incorporated things into everyday life eg: stretch before standing (helps OI symptoms), stand on one leg to clean teeth, reclining watching TV pull legs to chest etc - this works for me because I'm usually shattered by the time I get a mat out 😁
This follows the strategy used by a person with ME Cfs in Ron Davis' team. She took a year off and recovered by paying attention to never get tired . As in rest before you get tired. I notice when my breath or heart change or a hint of weakness comes and I go lay down.
I actually feel most awake when I've JUST overdone it, and other symptoms sometimes not until 3 days later! We are all so different! x
@@helenbarrett4432 Thats because you are triggering PEM. Many mild Long Covid and ME/CFS patients can feel bitter immediately after exertion ( I did too until I ended up with more severe disease). However that delay of 2 to 3 days is the classic symptom of ME/CFS. So if you are constantly triggering PEM, you are reminding the immune system to keep making the same mistake of attacking you over and over. The 'delay' before the crash is the time the immune system takes to build up an attack. So the overdoing it is the trigger and start of the build up of the immune attack. We are best to completely avoid triggering the immune system to keep making that same mistake, because it's teaching a bad habit. The idea Ron Davis's staff member had was to make the immune system 'forget' to attack. i.e. forget that cellular exertion is a threat, and that takes time.
Unfortunately for those with severe ME/CFS or Long covid, the energy of just being alive keeps that person in permanent PEM, so its currently very difficult for them to get better. But for those who can avoid triggering that PEM crash, they may recover
@@helenbarrett4432This sounds like you are (because of overdoing) you are on to much adrenaline, the crash comes than later (and potentially worse). I had to learn this on the hard way :-/
" Exercise " has been substituted for movement , as most of us have very sedentary lives. Rewind 100 years ago, most did not have cars ( so did a lot of walking ) and did mainly manual jobs. Convalescence was also an accepted part of illness trajectory ; today , pharmacy shelves are filled with meds that shout at us ," crack on !."
This therapist plainly explains that doing only that which is tolerable and feasable ( ie movement ), the way in which a sick animal woul recuperate..
This takes pressure off , one less stressor to cope with during recovery . Thank you Gez for a well put together and hopeful message from a very dedicated therapist.😊
What this doesn't address is the many people with PEM/PESE whose symptoms are exacerbated already by their essential activities of daily living. Even less so if they have care responsibilities or are trying to keep working when they need all round care. This is something society really needs to address. It's expensive but not so much as leaving people to flounder until they are too unwell. Also, those who are in the severe and very severe category of ME can tooerate so little i don't see how this could be an option for them to even try. The concept of pacing using time is not new. Basically, any strengthening or reconditioning movement needs to be incorporated into overall pacing and that involves assessing the individual's whole day and night, not just a small element of it. It all becomes a question of priorities within your budget. If you do one thing, you become unable to do something else that day or week. And the outcomes can be unpredictable. This video makes it sound so easy. If only...
Agreed - it’s very complex to work around the activity required to get through your day and see what you have left for anything like this - depending on how severe you are.
Agreed, with a but - I discovered the Feldenkrais method - tiny movements, that if you can’t manage you do in your imagination and they still seem to help. I’d love for there to be some research into whether that would still trigger PEM and if it would help. I might approach the international feldenkrais association’s research people…..
@@DirtyBlonde303😮 never heard of it!! Do you recommend a video?
Exactly my thought
PEM is one of my worst symptoms especially as Im a mum
Im unable to work and its more than frustrating
What really worked for me in getting rid of my PEM is HBOT (along with a closet full of supplements of course)
Jenna is so right about about using time as a measure, instead of amount, of repetitions or distance covered. Before Covid I could run three miles in fifteen minuets, or less. Last month I complained to my doctor that it took me over forty five minuets to jog three miles. Some days I can "run" for an hour, others thirty minuets and on bad days I am lucky to slowly walk for fifteen minuets. I find that if I get some form of exercise the brain fog is much less. So far, over a year and a half, this has been more of a journey in learning to go slow and listen, very carefully, more than a road to recovery.
Take it very easy with the running!
How long have you had Long Covid? If you now have CFS/ME then you shouldn't be running or you will get worse.
Thank you for your concern. I am VERY careful. I am a former endurance athlete, before Long Covid my body needed at least an hour of exercise a day to feel good. Somedays just getting out of bed is too much, other days jogging keeps the brain fog down. Its all a matter of very fine balance, my fried. Best to you. @@RUNDMC1
Yes Clair, I do have MECFS. I have been through a lot in the year and a half that I have been formally diagnosed. This has been the biggest education of listening to what my body can do and not having any expectations. I am still not working but I am slowly, slowly, getting stronger. You are right, in the beginning I would have never been able to run. Thank you for saying something incase some one read my comment and thought they could start running too. @@ClairDoubleday
Some days for some people it is advised to not go running, because the chemical composition of the air is not considered adequate for them to participate in physical activity. Maybe you don't need an AQI (Air Quality Index), because your body tells you.
I think this was very relevant to my recovery, thanks Gez.
I’m improving month by month. Started off with a PT in the gym who had me doing no weights or aerobic exercises, just some very gentle ‘stretching with intent’ tensing my muscles. After several months I was joining the low impact aqua aerobics class in the pool. After a few years I got back out swimming in the sea.
Worked for me, but not for everyone. Good luck y’a all.
Great to hear you’re doing better Ian!
I have resorted to Chinese breathing exercises (Chi). I'm curious about acupuncture?
If I over work myself, my breathing shuts down. My heart rate will be 130 and BP 80/70. I end up in the hospital and they don't find anything wrong.
Chi & Yen/Yang...good luck to all!
Thanks for sharing Ian. Stories like this excite me because I've reach the state of basically being fine around the house, all be it a bit tired and often with a mild-moderate headache. My PEM is savage though. Every time I've been nearly symptom free for X amount of time I'm like "I'm doing good! lets have some fun!" and maybe do an hour of work/exercise and get SLAPPED onto the couch for days. I guess my background in competitive athletics is probably holding me back at this point because my old 10% is like 150% of what I can handle now.
@@bennyb.1742 Yup, the PEM was frustrating as hell since up until Covid I was either coaching tennis, playing matches, surfing or snowboarding. I think being sports person we’re used to ‘burning off a cold on court’ and pushing through illness. Just doesn’t work at all with Covid! Complete rethink of what constitutes ‘progress’.
Currently been focusing on doing The Plank and Wall Sits following the research out that these static exercises help lower the blood pressure by allowing the arteries to ‘open up’ afterwards, apparently. So slowly gone from 166/120 to a more useful 120/80 and bpm gone from 172 walking back down to a reasonable 79bpm. I suspect Covid is as much a vascular illness as it’s other craziness.
@@saponi2acupuncture helped me, it wasn’t the magic bullet, but did ease symptoms.
In my opinion from my recovery I feel that just getting to and from this program would be to exhausting. Although if they came out with something that maybe you could do without leaving your house like an online program that we could follow
Yes the idea is you do it from home! Unfortunately they don’t offer an online program as so much oversight is required to make sure the appropriate levels of movement are aimed for, and the ‘prehab’ gives them confidence it will be safe.
right! i couldnt even drive early on!
They offer telehealth sessions but unfortunately only for patients in New York City.
In the 90's I was recovering from two traumatic accidents involving head and neck trauma. I was diagnosed with fibromyalgia and as I worked to overcome this with stretching and exercise I managed to 'push' myself through symptoms and overcome the pain and weakness of fm. Now , after covid, I feel a lot like I did then with brain fog, muscle weakness, joint pain but, unlike my coping with fm, I cannot 'push' myself through these symptoms...when I try that method, I collapse and end up several steps backward in recovery. I live in a small town in Candada and although our doctors try, they are just not up to date on the latest research on long covid. As I listen to these broadcasts, I have hope for improvement through education and understanding of this strange process of recover from this virus. (and now many viruses in my gut that sap my strength and will) I wish I had access to the type of therapy being discussed here.
Thank you for your continued research and support - I've missed watching these podcasts .
Thanks Dee!
Can you talk about the burning skin that comes with long covid? And how it is related to angiotensin II and endotelial damage?
I used to having the burning feet. It took two years to go away.
It is known that the renin-angiotensin-aldosterone system is malfunctioning in many patients with long covid and me/cfs. That’s also why people have orthostatic intolerance (there is too little blood in the body)
temp regulation and heat intolerance please🎉 this sucks!
This is a great approach, I've kind of been following this for a while and my periods of low symptoms are getting longer
Great to hear that!
Great timing in my recovery journey. Cheers Gez
No problem!
what life improving information... even life saving
Thank you for this! My vestibular physical therapist has helped me the most. He treated my pots like a traumatic brain injury. His eye exercises and gentle exercises (much like ballet) have helped so much :)
That’s great!
is your pots or high hr completely gone by therapy????
@@PR4SAN about 90% gone
Would love to know your contact if you'd be willing to share! I was working with a post-concussion PT, but the pace was so intense that I crashed afterwards.
@@neverseenblue11are you on beta blockers or just exercise
Thanks Gez and contributors very much appreciated. I get heart palpitations too never quite sure how much I can do with this threatening symptom.. I'm going to have an ep study to see if it might be A fib - fingers crossed it's not this addrd in too. Incredible the autonomic nervous system what it entails!
Palpitations frequently a consequence of dysautonomia. But do get checked out!
I know what you are going through, I had that too. If you were in good health before Covid I am sure this will slowly subside. I still have a slight "missed beat" every once in a great while but I was cleared by my cardiologist to resume exercise over a year ago. What I did to get here is to look up the vitamins and minerals that the immune system needs to function and start taking the daily allowances of those. I found that my body used up thing like B12 (had to get injections for that). Take it easy and don't rush. Your body is working hard to fight this, give it the space to do that and help it out as you would a loved one - you will make it.
Yes, very low. I had injections of B12 for about four months then switched to supplements. After that mess, I began noticing that other vitamins and minerals that my immune system needed were also becoming depleted. If you ever find that your bowl movements become close to imposable check magnesium levels. No need to suffer if you can simply take a supplement. @@zonnebloem100
@@RUNDMC1thanks Gez I will try and get up the courage to go for this heart procedure 😊
@@zonnebloem100thank you for your kind feedback about b12 etc. Unfortunately I wasn't well prior to Long Covid but didn't have these issues. Doc says my b12 is ok. I know some of this has been caused by HRT imbalance but it is still quite scary affecting day and night with all the other long covid symptoms 20 months on from infection. Trying to do best with diet gentle pacing none aerobic exercise etc. Thanks though for your kind feedback 😊
Sounds interesting. Is it known how this works in patients where things like GET (Graded Exercise Therapy) do not work? e.g. ME/CFS patients. It seems like you were asking questions similar to this with "What kinds of LC presentations do you see that this helps with?"
It also seems different in GET in character in a few ways that were mentioned: Focusing on low "RPE" and having exercises be time-input based rather than repetition based. It would just be interesting to know whether there is data or success cases in this approach where things like GET failed.
GET fails in the majority of cases for ME/CFS and likely LC too.
This kind of autonomic conditioning should be safe for the majority of LC sufferers, unlike GET. However not all LC is dysautonomic - hence my question.
@@RUNDMC1 Yes, it seems to be more managed and monitored, following ones baseline, where as GET utterly ignored patients who were feeling worse yet told to do the exercise, and keep increasing it anyway.
However I think this more gentle managed method may still only work for a few, and mainly on the dysautonomia, not so much for those with PEM as 'spoons' are being used up, possibly needlessly.
I struggle to get clothes on, let alone go to a clinic. So seems too much for me
Thanks Gez i can't wait for the new GI video
Thank you
I've had long covid for about 7 months which presents mostly as numb/cool feet and a cold sensation from the waist down, even though the skin is warm to the touch , with the occasional bout of lethargy. I came across benfotiamine b1 which is apparently used for repairing nerves and is helpful with diabetic neuropathy. I've taken 300 mg a day for 2 weeks now and I have had a lot of shifts in the numbness and energy seems to have increased with an increase in sex drive that i was not expecting. Some to explore I feel :) And thanks for such amazing videos Gez
Best of luck in your recovery Anthony!
Cold hands and feet are a typical ME symptom. The aroused side effects can have something to do with the vasodiling effects of the vitamin.
I’m having like panic attacks except there’s no reason for them, shortness of breath like my diaphram is paralyzed, uncontrollable heart rate - I feel like I’m being suffocated daily multiple times a day. This is not anxiety.
Very focused and acute autonomic dysfunction
Air pollution can be responsible for this.
Your body knows there is a threat when the chemical composition of the air is not good for you. Your body cannot send you an email or a notification by sms, to inform you.
It can also be blood clots and endothelial dysfunction which keeps the oxygen from reaching the tissues, possibly combined with mitochondrial dysfunction and dysfunctional vasodilation and -contraction.
GEZ! GEZ! GEZ! Your back! Missed your face! THANKS … Now I’ll listen to your vid excuse me “film”🤠
Hi Gez, I'm wondering if you ever used a CGM (Continuous Glucose Monitor) during marathon training?
What I'm trying to figure out is the impact of Long COVID &/or ME/CFS on blood glucose levels (BGL) with activities/ exercise - depending on intensity and duration, etc. I think it would be interesting to compare BGL & exercise tolerance before illness onset and after. As a biometric.
I've had ME/CFS for a couple of decades, was briefly a diabetic a few years ago & on insulin (not any more). What I found different to other long term diabetics - experienced in exercising and the impacts on BGL (spikes or drops), was that my tolerance of activity intensity (& other stressors) was much lower. Eg, for other diabetics a gentle walk often reduces BGL but high intensity exercise may temporarily increase /spike BGL. For me, low intensity prolonged activities was enough to spike BGLs (including while fasting).
And when I was briefly taking corticosteroids, it was an absolute nightmare trying to predict where the BGLs would land (depending on time of day + other stresses, BGL could dramatically drop, or the opposite- spike).
Note, I was also different to other diabetics when it came to the so called "dawn phenomenon" (early morning rise in BGL). For some reason I was the opposite.
I liked to get chores over & done with, when I'd just woken up (while still 1/2 asleep), before eating. But at this time of day, this activity would drop my BGL too low. Do the same chores later in the day (even if still fasting) - opposite effect.
I never used it whilst training! I’ve had some issues with glucose control during LC though
@@RUNDMC1 Thanks, that is interesting.
And there is some evidence of increased risk of new onset diabetes with Covid, including in previously healthy people (not pre-diabetic).
Hopefully with the increased use of CGM in healthy (non-diabetic) athletes and in health/fitness settings, combined with fitness bands, these data provide some further insight into Long Covid & ME/CFS mechanisms.
I am type 1 diabetic 46 years , I have long covid, for the first time ever, my long blood glucose was 51, that of a normal non diabetic,!😮
@@samanthapurcell3125 That's great! How unusual. Thanks for sharing.
Sounds like GET while trying to make it not sound like GET. The problem with GET therapy is that it's graded but it's not the only problem. It's exerting yourself beyond what you're capable of causing deterioration. If you stay within your limits I don't see what this adds other than another chore to do. Bedbound patients problem is not that they're deconditioned, it's that moving makes them sicker. I also don't see why someone would only use questionnaires to assess something like this, it's bound to introduce heaps of bias. Have any records been kept about objective tangible results with this routine? Like people being able to objectively increase activity, possibly monitored with actometers and the like? And if so how did they fare against control groups that didn't get this therapy?
The whole point of this is that you never move beyond a point which triggers symptoms. So the opposite of GET really.
@@RUNDMC1 That leaves me with the question, what's the point of this? It just seems like a chore to do and I don't see any objective evidence this actually works to alleviate any symptoms, let alone that it gets people into better shape.
What I do find in the papers I tracked down is that this is open-label(impossible to not be, imo) with subjective endpoints. Which brings up the same issue anything exercise or movement-related that has ever been researched for ME or LC is troubled with. How do you know that the improvements reported are not simply a result of bias, as has been the case with previous studies that relied on open-label treatment with subjective endpoints. The papers used patients who were at baseline not severe or bed-ridden, it would've been very easy to have patients wear actometers to get some objective results.
Do you know how long it takes the spike protein cocktail of nattokinase. Bromelain. And nanocucurmin?
It differs from person to person and it may be that spike presence is not the real issue causing your symptoms
Thanks Gez, for you time🙏 but PT? I don’t know if it works tbh
I think it’s very much a ‘your mileage may vary’ scenario - as with all things LC!
Sometimes PT can be therapies that are passive movement such as being wrapped and swung and even systematic gentle spinning in a full body Lycra wrap to cam and stimulate simultaneously the ANS. PT can with insight and knowledge and techniques CALM the system then use gradual reintroduction to stimuli or stimulation tolerance.
So often ANS can begin over react to any level of stimulation… mental, emotional, physical etc.
Using techniques to calm the ANS (a version of stemming) can then be followed by graduated tolerance of typical daily stimulants.
Movement is not always physical or exercise.
My son couldn’t calm to learn to speak or read (brain overwhelm fog). Wrapping and calming swinging and spinning for 15 minutes prior to a mental exercise calmed his system to bring up tolerance for brain exertion.
Hope that helps expand what some informed therapist can do. Choose your therapist for a sensory based therapy to calm the ANS first then integrate tolerance training
I might have missed it, but how much is medication (beta blockers, for instance) also an essential foundation for this kind of rehab?
For those who are quite POTSy, these kind of meds can make a difference in symptom management
These supplements have been recommended for long Covid and spike protein. Also does anyone have heat intolerance or body temp regulation problems? At my wits end. I will be doing a virtual with mt Sinai soon.
yes that's me, if i get a chilled wind/water blow on my back it can trigger my hands /feet to go white with pins and needles about 10 min later.
when that happens i can feel it coming on bout 5 min before i see it in my hands( my left thumbs always goes first).
I put my hands in warm water to reverse it ( i look forward to doing the dishes these days LOL)
If I'm out somewhere I just buy a coffee and when its cool enough i put my fingers in it till I come right.
sleeping with socks is also a winner!!
BY FAR THE BEST WAY!..... swing your arms separately like a windmill as fast as you can and after a couple of seconds you will see your fingers go bright red as the blood is forced back. It my get out of jail card LOL
This sounds helpful but I'm personally not a fan of when people start using synonyms unnecessarily e.g. "movement" is good, "excercise" bad.
Unfortunately many of the psychologisers do this too and to the detriment of patients. I did sadly suffer under watered down GET in an NHS CFS clinic myself and can see how people are upset by mentions of "excercise", but I can also see how remaining conditioned and improving conditioning in a safe way where possible is beneficial.
What I can't stand is the rebranding, for good or ill; we all know what common words mean.
To be clear - what Dr Tosto-Mancuso is talking about here is *NOT* GET, or any form of it.
@@RUNDMC1 we can argue all day about what GET is and isn't, but I have to stick to my previous assertion that any gradually increasing physical activity done as therapy can be called Graded Excercise Therapy- would that another name had been chosen by certain psych professionals!
I think the incredibly important distinction between this and what most of us understand to be GET is that this is to be done WITHIN one's energy envelope IF possible, as opposed to the intentional overstepping of one's ME/CFS/LC limits.
When I was mild/very mild with ME/CFS and undiagnosed I was often able to be relatively physically without harm, and now I am doing verrrry careful self-directed physio to help my POTS (mostly sitting up a bit more each week) because I KNOW I have deconditioned unnecessarily while trying to preserve what's left of my health and understand my condition, and it helps.
Honestly I believe a lot of the row over GET is that no one agrees what it is and in fact a lot of clinicians who thought they were doing it successfully were encouraging sensible energy management and perhaps even useful physio that help a lot people, not telling them to expect and ignore symptoms overexhertion i.e. what most of understand by GET.
I think most people can understand that excercise/activity/movement is good for most people within reasonable limits, and for people with these conditions the limit is different and lower, sometimes so low as to be impossible to manage. And that there are sometimes other pathophysiologies at play e.g. CCI that make everything unsafe.
I understand autonomic conditioning can sound like another rebranding of GET at first glance, but here is the difference:
Autonomic conditioning is basically pacing but guided and marginally more intense. Whereas with pacing you would exert at about a level 0-1 out of 10, with autonomic conditioning you exert at 1-2 out of 10 and your therapist trains you to pace and not overexert. In either practice, once you exceed that threshold or notice symptom exacerbation, you stop and rest. Then when you have recovered, you resume at a lower level or for a shorter duration. Your therapist helps you monitor yourself during sessions and teaches you how monitor on your own in the subsequent days. The Mount Sinai Post COVID-19 Recovery Program says the majority of patients experience long term improvement in dysautonomia after this therapy, though some relapse and some don't see improvement. I don't know if it's been independently verified yet. Gez has done some patient research on self-guided versions of autonomic conditioning in himself and others and found that it can lead to long term improvements in symptom reduction and energy levels and sometimes even full recovery.
In GET you exert as much as needed to progress through activity at increasing intervals the therapist determines for you, even if it leads to symptom exacerbation, injury, collapse, or death. The therapist pushes you to continue no matter what and tells you any symptoms are psychosomatic and that you can only get better if you learn to ignore them. As you probably know, only a very small minority of patients report improvement from GET whereas most have no improvement, many have long term damage, and some have died.
The only other activity model for ME and Long COVID that I'm aware of is Radical Rest, where you do as little physical activity as your body and lifestyle will allow, ideally spending most of your time in bed for several months or more. It's been shown to lead to gains in function, decreased need for rest, and sometimes full recovery.
Hope that helps clarify!
@@alexba1ley you misunderstand me. I did not accuse these people of rebranding what we commonly understand to be GET and have clarified further already.
Furthermore, GET under the NHS was and perhaps still is very varied. During the experience I mentioned previously I was indeed told not to worry about symptoms too much, think positive etc. and various other codswallop, but it was personalised and did encourage careful pacing- just not at the right level! Unfortunately it was partly a misconception of what GET was/can be led me to tolerate this insidious type of "therapy" for too long and continue to decline before I realised what lay behind it.
What good is that, when there is continuous viral reactivation?
(a) we don’t know that there is, (b) even if there was, we want to get the body to stop ‘reacting’ to it - this could help with that
A little bit of movement is actually good for the body and it is generally good for you to let your blood flow. But I agree: there is a line you don’t wanna cross where the virus starts replicating and causing problems faster than your body can handle it.
Gez I am curious, how are you feeling? What percentage would you give your recovery at the moment?
Massively variable and hard to stick a number on it. Can’t go back to proper work or do any exercise yet.
How do you progress if you have to care for a child and pacing isn’t possible? I have PEM all the time.
I can't imagine how hard childcare would be. I was slowly but surely recovering from an ME-like illness 18 months ago, and was so optimistic I adopted a dog. A few months later I got covid and never recovered. A short walk in the afternoon is now all I can muster for him, and sometimes not even that much. Never mind taking care of the house and yard...
Anyone who an old neck injury should look into restoring a proper neck curve. There's alot of symptoms that are the same as long covid and dysautonomia.
I can predict how cute the guest is going to be by how much Gez smiles.
Outrageous
@@RUNDMC1 LOL
@@dangerzone007What is wrong with you?
@@teddybearroosevelt1847 I have long covid and house bound. What's wrong with you?
Inappropriate 😮
2 years of lc, idk what recovery means
Even if i recovered everything seems to be the same
so we need an in home therapist 24/7 covered by insurance!
Wow this sounds similar to Raelan Agle's self rehabilitation. She talks about how she would do daily very short and gentle "movement" even if it starts with only being able to move a limb in bed. Then do a fee seconds more etc and she said it took a few months of this to begin to rebuild some strength and muscles.
If this worked, I we would all be healed by from just daily living. We tend to do what we can handle and of coarse over do it on occasion when we are feeling good. I spent $25k at Cognitive FX, it did basically nothing for my PEM, but I will credit them with getting my resting HR down. It was 100bpm and after interval training for about a month it came down to the 70's. The intervals were 30 sec to an HR of about 130, then you relax in a chair with breathing until your HR comes back down (about 5 min.) and repeat 3-4x.
The problem is activités of daily living arent symptom titrated - unless you’re sensational at pacing!
Sounds a little like graded exercise ☹️
Watch the vid - it’s categorically not that!
TL;DR
Treatments???
Call it movement not exercise and it'll be alright??? Lads lads lads. Please.
With the new cell phone age were always looking down at our phones., when we should be looking up. Try some neck traction with a large bath towel rolled up under your neck laying flat on the bed. You should breath a sigh of relief within a few minutes
Start twice a day 5 to 10 minutes at a time.
Yeah I don’t know about her. She’s not among the best of your guests in my opinion. Watching her talk I just get the feeling she’s doing this cause she wants to go on other RUclips channels and turn this into a side gig rather than her really understanding what long covid and me/cfs are and how the medical profession is failing people
Politely disagree but thank you for sharing :)
12 mins to say graded movement activity in safe position at low rpe. 😂
Mount sinai is known to be a joke for long covid
Long covid, can be symptoms from your covid injections...it's not rare either.
@@marleneholloway7775 I know
I disagree with a lot of this video. Post Exertional Malays is not so predictable or measurable like this, especially unless EVERY single little factor in your life can be controlled. It's just unrealistic and very misleading. I actually think content like this can be harmful to vulnerable people.