New insights from the German exercise physiologist on how to pace with ME/CFS (especially in order to avoid viral reactivation through overexertion)
Interesting thread from Reddit.
TLDR for the link: This professor suggests that, as a pacing regimen, you never exert any muscles for longer than 30 seconds at any one time. After any such exertion, you need to have a break of 30 seconds of rest. Otherwise hypoxic damage of the muscles is bound to occur which leads to PEM the next day or day after. When you avoid PEM for a sufficiently long period of time, and exert yourself only in a safe manner, then, according to his experience, you can recover (go into remission).
TLDR for this post: More findings and recommendations in connection with this method. Plus explaining how overexertion leads to the flu feeling that some experience, through viral reactivation. I have highlighted the relevant section below for you to find in bold, if you want to read about that part in more detail.
Only recently I found him speaking in German podcast on ME/CFS for which he was interviewed on the subject of pacing with ME/CFS specifically. (For fellow German speakers, here is the link)
You will make more sense of the below points if you are familiar with his approach of the 30/30 seconds rule already, so you might want to take the time to read up on the original post linked above, in case it's all new for you.
Ok, so here are some more interesting insights from Dr. Simon that I only happened upon recently in the above mentioned podcast interview, specifically for ME/CFS:
(All these points reflect what he says in the podcast, but it's not a comprehensive list for the whole interview, because I only jotted down what was either new for me or else reiterated what I thought was worth reiterating again. If I have left something out that seems important, please, German speaking friends, post it below, so that we don't miss anything for the friends who are not German speakers but would also like to know everything that was being said and explained.)
Here goes:
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It typically is easier to go into remission and regain impressive function with his 30/30 seconds pacing regimen if you have suffered with ME/CFS for a long time already and have a stable baseline than if you are newly and severely affected by the Long Covid version of ME/CFS that's all fresh. An explanation for this is, that typically new Long Covid patients still have very active auto-antibodies that cause more disruption to the system than it is the case in longtime ME/CFS sufferers. The ME/CFS sufferers' antibodies willl have calmed down over the years already.
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He tells the story of an ME/CFS patient of his who went into full remission with this 30/30 pacing strategy after having been very ill with ME/CFS for many years. She started with a simple 30 seconds standing up exercise only and slowly slowly slowly (this can not be emphasised enough) worked her way up to now being able to go for runs in 14 km/h and 7 km/h intervals again. 7 km/h is a light jog, according to him. So I would guess that 14 km/h is decent running. (Note: 14 km/h are 8.7 miles per hour and this translates to 6 minutes 54 seconds per 1 mile.)
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He considers mild to moderate ME/CFS sufferers to generally still be in comparably quite good physical condition as they typically can still do impressive things if need be (of course they will crash if they overexert, but just speaking of strength, they still have an impressive capacity and function considering how ill they are and feel). It is these patients for whom his method can effectively yield very good results, if they learn how to not overexert themselves again. Note: especially dangerous on good days where people tend to overexert themselves. This is detrimental. It doesn't work. According to him, no one ever recovers by exerting themselves over capacity on good days.
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ME/CFS patients' lives are so difficult because they are stuck in a vicious circle of overexertion all the time. If these patients got the chance to truly pace, then they would not be so sick and they could recover. But the daily overexertion of just basic hygiene and household chores keeps them in a loop that keeps them low functioning. It's a vicious circle.
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Mental and emotional exertion have the same detrimental effect as physical overexertion. They have to be avoided if one wants to regain their health. Emotional exertion can also happen if exciting positive things happen, like a visit from a friend you have been looking forward to see. Patients will need to find a way to emotionally pace. This is important.
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Micro circulation issues: The whole problem is that the muscles and tissues don't get sufficient oxygen from the blood (which is perfectly oxygenated) anymore. This is a problem of micro circulation. It happens because some of the important cells for this to work are destroyed by auto-antibodies after an infection. But, and this is the important bit, they can come back. New cells can form again. And the vascular system must learn how to regulate blood flow again. This happens in the 30 seconds break (the "awarding break" where we sense and assess how we feel and where we rest and give the system a chance to learn). Such learning will take weeks, months and sometimes years to come to full fruition. But the body can do it if you give him the breaks and opportunity to adjust very very slowly.
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Activities where you need to use your hands over your head (like shampooing your own hair) will be extremely exhausting, because the blood needs to flow against gravity even higher up and the body of ME/CFS patients can't tolerate it. The 30 seconds rule doesn't work here. It needs to be less. Like 5 or 10 seconds. Then rest before you continue.
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When going for a slow and careful walk in accordance with the 30/30 rule, some ME/CFS patients need to sit down for the 30 seconds break while others can stand still or walk very very slowly. For the more severely affected folks, when sitting down they will need to raise their legs and rest their head on their knees to get the beneficial effect from the 30 seconds break. So not everyone will be able to go for walks right away, as a training, even if they can technically walk for 5 minutes. If they need their rests to include sitting or lying down, when there is no opportunity along the way to do so, then walks are not possible yet. Stick to simple standing up training at home. Sit down immediately when you feel unwell. If you can't yet stand up and tolerate it, start with sitting up and lying down again. If you can't tolerate sitting up yet, start your "training" by only raising your arm for a few seconds and then have a break and see how you tolerate it.
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As far as breaks are concerned: Switching between physical exertion and cognitive exertion unfortunately doesn't work as a break. It's not a real break, but we need real breaks. "Awarding breaks" as explained in the original post.
- Intense overexertion can lead to viral reactivation. (He says that sports physiology has shown this already 10 years ago)
Overexertion apparently "lures" back viruses from the tissue into the blood. But not only the virus itself, but also lymphocytes (which react to the virus)!
He says that this is what immediately leads to the patient feeling ill and feeling as if they had the flu or were about to getting the flu. It's the overexertion that facilitates this. And it's "definitely not good!" (quote as emphasized by Professor Simon).
Therefore patients who want to recover their health need to avoid such exertion intensity that leads to these immediate flu feelings. It's all about the intensity. (He emphasizes that word.) He says that unfortunately it can also be emotional or cognitive intensity that does this.
Once the viruses are reactivated then it can take 4 to 8 weeks (without any overexertion or too much physical or emotional intensity) before the situation calms down again.
This is the time when it can be "dangerous" to fully retreat to your bed and lie down for many weeks, as deconditioning happens on top of it and it makes everthing worse.
In case this reactivated virus thing happens to you, you should try extremely carefully to stay active in some way, but be extremely careful to not overexert yourself and to dial down on any mental (cognitive) or emotional intensity. (That's why for some patients psychotherapy is extremely helpful when they learn to calm themselves before intense emotions even happen).
He says that these flu symptoms don't always mean a full viral reactivation in every case. But when these flu feelings and symptoms happen, it points to too much previous exertion intensity. And that that is the intensity that you will need to avoid in future in order to recover.
His whole approach says to not be afraid of exertion in general, just 100 % avoid overexertion.
Bear in mind that muscle use of less than 30 seconds generally is safe when it is followed up by a 30 seconds break. And if you are at a stage where you have a steady baseline already that is bigger than these 30 seconds. If you are severe and bed bound than 30 seconds will be too much for you at this stage. You need to start smaller.
And also with taking stairs, the 30 seconds rule might not apply for you yet, even if it works well in other areas. It's more complicated due to the complex nature of the thigh muscle. You need to be even more careful. Take 3 steps, then rest 30 seconds. Then take the next 3 steps. It will take you longer to get up the stairs, but it generally will not exhaust and destroy you. (Of course this doesn't apply yet to patients who are still bedbound.)
If as an ME/CFS patient you do happen to overexert, make sure to rest the day after and day after that. Big crashes for ME/CFS patients, in his experience, happen not after one simple overexertion on one day, but after overexertion and then more overexertion on the next day and the day after as well.
EDIT: Another important message I just remembered, is: that generally, once the vascular function and microcirculation is restored with this pacing strategy, the recovered person will have their full capacity again. That means that a former professional athlete who is bedbound post Covid will not have to start from zero (like an untrained person) after recovering. This shows that it's not a matter of deconditioning. Once the circulation is restored, people can fully use their muscles again and walk 30 kilometres is necessary, without having to train up months to do it. The normal energy will be fully restored.
EDIT 2: Here is Prof. Simon speaking in English at a conference about this. It is a very technical talk to his colleagues, and unfortunately doesn't contain much info for patients on the 30/30 method. But in case you want to check him out nevertheless: from 46:32 onwards in this Vimeo link: https://vimeo.com/771944349 (thanks to u/Electrical-Fault301 for finding this and letting me know).
With that...
For me, my time on the sub ends here. Not because I am already fully recovered, but because the other day I read a seemingly random statement in a comment that said that people who get better from CFS don't keep hanging around on the CFS sub. I have been searching my soul and have now decided to take a leave from the sub and potentially even reddit as a whole, to see where it takes me. I want to go into full remission and I feel like hanging on to the sub and all the excitement (i.e. the intensity) that comes with posting on here (with my controversial views on the health benefits of calming your system with re-education (retraining) of the nervous system) is not allowing me to fully move on and fully pace the way I want to.
I feel my views on nervous system re-education are totally in line with what Prof. Simon is suggesting with his findings, that emotional pacing is key too, that we need to dial down intensity ourselves, and that the body can learn to regulate itself again, even when you are severely dysfunctional and your vascular system doing its own thing and causing you an insanely high heart rate. But arguing about my views in comments with users who feel like re-educating your nervous system or doing trauma therapy couldn't possibly have any health benefits for "real" or "true" CFS patients, is not going to bring me the calm I need for where I want to be.
I wish everyone on the sub, no matter if friend or foe (of my views and comments), health and happiness ❤️
Norway. At least according to Germany I'm a Norwegian citizen. And I have a lot of relatives there. It's a stunningly beautiful country. And I think their politics aren't as braindead as the rest of the world's.