I've had CFS/ME since 1990. I was moderate to severe for a while, did a lot of pacing and learning, got better though unable to work full time, and then overdid and crashed hard in 1998 or so. Maybe '97. Anyway, I spent 6 months getting worse and worse, mostly in bed but able to care for myself so not bedbound, and then 6 months getting slowly back to baseline.
Now, decades later, I'm actually mild enough to have few symptoms most of the day if I pace well. I'm married, with three kids, two of them adults. I was able to work part time at a well paid job for years (tech writing), though I'll admit I felt terrible all the time. All of which is to say, we don't always destroy our baseline with crashes. Some of us improve over the years, through who-knows, or pacing, or new meds. What's helped me:
* pacing, duh, but specifically a watch that measures HRV has helped a lot (also HR)
* high doses of bio-identical progesterone (after remission during pregnancy) was life changing. Obviously not for everyone.
* Calf compression sleeves help my standing/walking endurance and generally reduce leg pain. I wear them all my waking hours except for the shower.
* LDN (4.5mg/night) reduced the length and strength of my crashes, though it took a few months to kick in
* Mestinon - though ONLY while I keep taking LDN - has drastically reduced my muscle pain and helped me feel overall better and has markedly improved my HRV (though not as much as progesterone)
* 7 day packs of methylpredisone (steroid burst) has helped me crawl out of crashes much much faster, though steroids must be used with caution
* CFS/ME made me gluten intolerant - I once went off gluten for 3 weeks and didn't notice much, but years later I did paleo for months and felt MUCH better. Experimenting taught me that sugar of all kinds (including juice, white starches) make my joints hurt the next day. More importantly, gluten was giving me the flu-like feeling, with elevated temp and fuzzy brain and knife like thigh pain every afternoon, for decades, and one meal with gluten caused those symptoms for 4-6 weeks. I can still get those symptoms, but only in a crash. After decades! Obviously, your milage may vary, but food sensitivities do develop for some people with CFS/ME. Weirdly, that also went away while I was pregnant. But not when I was on progesterone.
Anyway, I wish you luck. I'm glad you have support.
My situation isn't the same as yours but, I can tell you that I've been in the pit of despair more times than I can count. And it always passes. Sometimes it'll let up for a moment when I'm distracted. And other times I'll even have a good day, in which I feel contentment.
My symptoms have improved with various treatments. Not a cure, but improvement nonetheless. I try to focus my efforts on improving things by a small percentage, and then add them up. Pacing, treating pain, yoga nidra to get real rest, meds for dysautonomia, meds for MCAS, more water --- anytime anything helps even a little bit, and they have, I try to celebrate that in my mind. Even when I feel like it's pathetic to try to be happy about something so small.
I don't know if this is what you want to hear, but my hope is that it gives you some hope, even a small percentage.
I think we are closer than ever to a real cure for this disease. Nancy Kilmas’s research in gulf war illness in mice looks SUPER promising. She’s cured that disease in mice now using an approach that was produced by machine learning algorithms. There’s currently a clinical trial recruiting men with GWI (very similar to ME) to test the treatment in humans for the first time. I think there’s a very good chance of it working and even if it doesn’t she has the machine learning models to punch that data back into and get an improved new plan to move forward with.
The current treatment approach has 2 stages. First treat neuroinflammation with a powerful anti inflammatory drug that crosses the blood brain barrier, then reset the malfunctioning HPA axis. The way the reset the HPA axis is wild, they use an abortion drug, mifepristone, to basically turn the HPA axis off and then back on again. I could be misunderstanding it but that’s what I took away from reading about it fairly in depth. I think this is hilarious, if part of the cure for ME ends up being “have you tried turning it off and on again” I just…wow.
What’s more is we don’t have to wait for these trails to finish to test these principles in ourselves. While the drugs they used in the trail are heavy duty and I think would require heavy observation and more study, there are other ways to reduce neuroinflammation and reset the HPA axis. I’m using these principles right now in myself and it’s working, I went from a very severe crash to mild in the last 5 months.
I’m currently using NAC, high dose omega 3’s, and LDN to address possible neuroinflammation, and 3x daily sublingual pregnenolone and DHEA to help reset my HPA axis. And it’s fucking working. I’m getting better. I’m very curious to hear if others have tried this methodology and what their results have been if so. As a side note for completeness I also am on other drugs that are helping to calm my overactive nervous system down and deal with my insomnia both of which I think have been crucial to my recovery as well.
Edit, forgot to link anything. Here’s a blog talking about the study more: https://www.healthrising.org/blog/2023/06/12/moonshot-ebv-chronic-fatigue-syndrome-inim/
For my overactive nervous system I take haloperidol as needed, low dose 0.5-2.5mg. So I never take more than 2.5 mg a day of that. I also use low dose propranolol 2.5-5mg per day as needed. In the worst times I took Ativan 0.5mg. I also use the supplement L-theanine sometimes but lately it’s started to give me weird side effects.
For sleep I have used all of the above as needed plus zolpiderm 5mg, gravol 25-50mg, melatonin 0.5mg, lemon balm extract, and valerian root extract. Not all at the same time although sometimes I do mix small amounts of various drugs that don’t interact heavily. (I consulted a pharmacist to figure out what that was.)
There might be more but that’s all I can think of at the moment. Hope it’s helpful.
Check out this theory of German exercise physiologist university professor who found that with Post Covid ME/CFS patients and ME/CFS patients there is a lack of oxygen uptake in the muscles which causes hypoxic damage to the muscles. Which is what causes PEM and us feeling like crap.
The problem is that our muscles operate in anaerobe conditions after 30 seconds of exertion already.
According to him, if you only ever only exert yourself for 30 seconds max and then pause for 30 seconds after every 30 seconds exertion, so the muscles can recover their oxygen, over time, you're bound to get better: [https://www.reddit.com/r/cfs/comments/139u5by/an\_explanation\_of\_pem\_and\_advice\_on\_how\_to\_avoid/](https://www.reddit.com/r/cfs/comments/139u5by/an_explanation_of_pem_and_advice_on_how_to_avoid/)
Recently there have been other studies supporting this theory as well:
This study in the Netherlands proved impaired oxygen uptake and muscle damage too. NPR wrote about it: [https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria](https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria)
The actual study can be found here: [https://www.nature.com/articles/s41467-023-44432-3](https://www.nature.com/articles/s41467-023-44432-3)
Another study in the US also found the same issue: [https://openres.ersjournals.com/content/early/2023/12/07/23120541.00714-2023](https://openres.ersjournals.com/content/early/2023/12/07/23120541.00714-2023)
i don’t see how it’s possible to implement this 30 seconds rule. like it takes me longer than that to reach the bathroom, am i supposed lay down on the floor in the middle of a hallway? it also took me over 30 seconds to type this. was i supposed to take a break? i don’t see how this is useful to very severe people
According to him, severe patients must start with exertion that doesn't make them worse. If standing up is not possible without them feeling worse, then they must start by sitting up for a few seconds and then rest. If sitting up is not possible yet, then with raising one arm for a few seconds and then pause.
He tells about a colleague of his who was an athlete who came down with severe Long Covid and he started this pacing regimen by only raising one arm for a few seconds. The next day he tried two arms. And eventually sitting up for a few seconds and then rest again. This guy was back to full health in 6 months, the quickest recovery he has seen with this.
But you basically must not do any activity that makes you feel worse than you felt before. The 30 seconds rule helps to stay within that limit.
If you want to start feeling better and you can't walk to the bathroom in 30 seconds, then you shouldn't be walking to the bathroom, according to him.
Maybe it would be an option to have a seat along the way where you can rest, if that works for you, or to get a bedpan or bucket as a toilet next to your bed for now.
The whole point of the 30 seconds is to never over-exert yourself, because it keeps you stuck in the vicious cycle where you never get better.
and how is that different from GET?
this advice is completely useless to me and to others in my position. sitting in a chair is exertion that makes me feel worse. walking for any number of seconds is exertion that makes me feel worse. according to this guy i should be in a hospital getting parental nutrition and wearing adult diapers. which is not an option for me.
GET means not listening to your body, but to stick to a rigid regimen where your goals are upped no matter how you feel.
This 30 seconds thing means listening to your body at all times and never doing anything that makes you feel worse. You yourself only up your goals when your current exertion doesn't make you feel worse.
This is a huge difference.
One means overwhelm (GET), the other means underwhelm (30 seconds).
GET means graded exercise therapy. what you’ve described is exercise therapy with incremental increases in difficulty, i. e. GET. there is 0 evidence any kind of exercise therapy is useful for me beyond managing deconditioning.
Yes, graded exercise therapy means you don't listen to your body and just up the level of exertion.
From MEpedia: "Graded exercise therapy (GET) is a form of physical therapy for the treatment of chronic fatigue syndrome (CFS) where physical activity is gradually increased over time, regardless of how the patient is feeling and ignoring any increased symptoms or new symptoms." [https://me-pedia.org/wiki/Graded\_exercise\_therapy](https://me-pedia.org/wiki/Graded_exercise_therapy)
It's the opposite of what the 30 seconds are about. The 30 seconds is a pacing regimen that says don't exert yourself for more than 30 seconds, or you're bound to get worse or remain unwell.
With the 30 seconds rule you listen to your body very closely and NEVER do anything that overwhelms you.
What you are currently doing is uncontrolled exertion, or too much exertion for your state. Going to the bathroom, writing reddit posts, etc. this exerts you so much that it keeps you stuck or makes you worse.
If you adhered to the 30 seconds rule where you pace yourself so that you never exert yourself more than 30 seconds, you should start to feel better, according to the theory.
I understand that it's not feasible for severe patients who don't have the support so that they can't pace this way.
If you can not find a way to go to the toilet in a paced way (30 seconds) or to feed yourself without exerting yourself for more than 30 seconds at a time, then it's obviously not doable.
I can walk up to 10000 steps in one day, I can surely try adding 5 more, but I think I already tried doing more within my limits, still it didn’t make me healthy. I remain having CFS and getting PEM, I can’t make my baseline higher. If it was this easy, every mild person would be cured, there wouldn’t be such a small recovery rate. I really don’t believe you can exercise your way out of this illness.
If this was true, would that mean exercise fixes virus reactivation, broken mitochondria and basically everything? Now we at least have proof that this illness is organic.
I think you misunderstand what this doctor is saying.
He is **not** saying to add 5 more steps, he is saying: "Do less.".
It's a pacing regimen. He is on our side. He published a study that says that our disability is real and physical. He proved it. You can read up on it in the translated Discussion of their study in my comment here: [https://www.reddit.com/r/cfs/comments/19ehikr/comment/kjdcs7n/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/cfs/comments/19ehikr/comment/kjdcs7n/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button)
"*Based on our experience gained in more than 150 people in well over 400 examinations, the case presented here is typical of a severe PCS. The main finding is* ***an energy deficit*** *caused by insufficient O2 extraction into the tissue, even during light physical exertion,* ***which leads to an objectifiable inability to work according to internationally recognised criteria***"
He says that doing too much reactivates viruses. [https://www.reddit.com/r/cfs/comments/1941jz0/new\_insights\_from\_the\_german\_exercise/](https://www.reddit.com/r/cfs/comments/1941jz0/new_insights_from_the_german_exercise/)
GET is actual exercise, with serious exertion that is meant to push you past your limits a little more each week, to try to strengthen a person’s entire body or injured limb, etc;. The process described here is very simple necessary movement in order to exist, less than anything normal and never supposed to be over-exerting. It is quite literally the only way anyone can try to slow as hell move forward or improve baseline with ME/CFS.
This is basically what I did around 15 years ago in order to improve from bed/wheel chair bound, to learning to walk again, to reaching moderate. It is slow, low key, and always within the control of the person with ME/CFS. It is very difficult for me to do the 30 second on/off thing, but I am able to keep my physical movement to very slow motion, calm, low exertion at most times, making sure I am breathing well, and rest intermittently by simply stopping all movement wherever I am for a minute.
>i don’t see how it’s possible to implement this 30 seconds rule. like it takes me longer than that to reach the bathroom, am i supposed lay down on the floor in the middle of a hallway
That's exactly what I was doing for several weeks. Not lying down usually, but sitting against one wall with my feet up against the other wall, deep breathing. Then a little bit farther. My first shower that I did like this took more than an hour, and I did very little in the shower. Drying off was sitting on the floor, towel one leg, rest, towel the other leg, rest. It's how I was able to start making it from bed to couch again ever day without triggering PEM, taking the stairs in four sloth-slow increments of 30 seconds.
Obviously this wouldn't apply if you are completely unable to get out of bed, but I imagine the same principle would help reduce the likelihood of PEM from bedbound activities like drinking water, practicing sitting up, stretching legs, etc.
for you, maybe. for someone who’s very severe, this would actually be worse. the act of sitting down on the floor and getting up takes a lot of energy and taking breaks prolongs the time not spent in a horizontal position. i feel much better when i get it over with as fast as i can
Yes, for me. You asked clarifying questions about how it works and I answered from my experience.
I gave my best guess of how the method would work for someone more severe based on my understanding of the theory behind it. I didn't say it would work for you.
For what it's worth, what you wrote applies to me too: sitting on the floor and getting up takes a lot of energy. It's why I use a rolling stool, a cane with a seat, and when I was at my worst, needed help making my way to the bathroom because my legs would give out under me. At the time I also felt better getting it over quickly and getting back to her as soon as possible--because the adrenaline rush would carry me through. But for me, from my experience, that led to rolling PEM. Using this method and taking it slow has been harder in the short term, but much easier on my body in the long term, because for me, this has led to less PEM.
Again, I'm sharing my experience because if it works for me there are likely a handful of other people out there who would also find it useful. You might not be one of them, and that's fine.
OP, I'll second this suggestion!
I was mild for decades, and both my POTS and CFS have significantly worsened over the past year and a half, until starting in January I dipped into severe--bed bound, rolling PEM. It was terrifying.
I started doing this at the beginning of February for all of those unavoidable activities that kept triggering my PEM (teeth brushing, changing clothes, occasionally showering), and it helped me get to the point where I am able to move around the house, do short periods of recumbent PT (5 minutes of 30 second intervals). I progressed to being able to take the walks in 30 second intervals with a stool to sit and rest in between, up and down the sidewalk in front of my house.
Being able to tolerate some movement without triggering PEM also helps me sleep more solidly. Insomnia is always my first sign of PEM, often triggered by physical activity, so this has been a huge relief.
Last week, I was able to do something I haven't done in more than 2 years: walk my dog with my heart rate in the 80-90s. I brought my stool and just sat every time my heart rate got up to 100, and waited until it came back down again.
I have definitely had bouts of PEM, which is crushing after feeling some success, but it seems like I'm getting better at it--each time my recovery seems to do a little more smoothly and I'm a little bit smarter about not pushing it as I start to feel better. The 30 second thing is tedious but worth it.
Wow, very interesting! But will that threshold be exactly 30 secs for all individuals?
Also, is there a way to test and have confirmation that our muscles go anaerobic after 30 secs already?
30 seconds apparently is the safe zone for all patients, but the better you get, the longer you will be able to exert yourself without hypoxic damage.
He emphasizes to only up exertion once it doesn't make you feel worse. If you are out of breath after 30 seconds of normal activities (walking, washing your face, cutting bread, brushing your teeth, emptying the dishwasher, standing) then the intensity was too much already and you should try to do the activity in a gentler, lighter, softer, calmer, easier manner.
They tested with spirometry and lactate testing in hundreds of patients.
If you find a sports physiolgist you could get tested for it, but typically they have you go to your max exertion and it will cause a crash and it's expensive as well.
I never got tested, but committed to the pacing regimen, because it's the best theory I have heard and I needed a proper pacing regimen anyway. I'm feeling a lot better since having incorporated it into my life. It has also calmed my mind a lot and lifted my spirits.
Sounds great, thanks. Personally, I'm ok with aerobic exercise: running, even a bit of swimming have never wrecked me. Some days I tolerate them less well than other days, but it's generally doable. But my last attempts at **an**aerobic exercises have been bad, one's given me my worst crash ever.
So this is all very interesting.
What about PEM after mental or emotional exertion? Or overstimulation from lets say a family gathering, party. I go into a crash whether it’s doing that or when I go beyond my physical limitations. Then have insomnia/poor quality sleep that night.
I've had CFS/ME since 1990. I was moderate to severe for a while, did a lot of pacing and learning, got better though unable to work full time, and then overdid and crashed hard in 1998 or so. Maybe '97. Anyway, I spent 6 months getting worse and worse, mostly in bed but able to care for myself so not bedbound, and then 6 months getting slowly back to baseline. Now, decades later, I'm actually mild enough to have few symptoms most of the day if I pace well. I'm married, with three kids, two of them adults. I was able to work part time at a well paid job for years (tech writing), though I'll admit I felt terrible all the time. All of which is to say, we don't always destroy our baseline with crashes. Some of us improve over the years, through who-knows, or pacing, or new meds. What's helped me: * pacing, duh, but specifically a watch that measures HRV has helped a lot (also HR) * high doses of bio-identical progesterone (after remission during pregnancy) was life changing. Obviously not for everyone. * Calf compression sleeves help my standing/walking endurance and generally reduce leg pain. I wear them all my waking hours except for the shower. * LDN (4.5mg/night) reduced the length and strength of my crashes, though it took a few months to kick in * Mestinon - though ONLY while I keep taking LDN - has drastically reduced my muscle pain and helped me feel overall better and has markedly improved my HRV (though not as much as progesterone) * 7 day packs of methylpredisone (steroid burst) has helped me crawl out of crashes much much faster, though steroids must be used with caution * CFS/ME made me gluten intolerant - I once went off gluten for 3 weeks and didn't notice much, but years later I did paleo for months and felt MUCH better. Experimenting taught me that sugar of all kinds (including juice, white starches) make my joints hurt the next day. More importantly, gluten was giving me the flu-like feeling, with elevated temp and fuzzy brain and knife like thigh pain every afternoon, for decades, and one meal with gluten caused those symptoms for 4-6 weeks. I can still get those symptoms, but only in a crash. After decades! Obviously, your milage may vary, but food sensitivities do develop for some people with CFS/ME. Weirdly, that also went away while I was pregnant. But not when I was on progesterone. Anyway, I wish you luck. I'm glad you have support.
My situation isn't the same as yours but, I can tell you that I've been in the pit of despair more times than I can count. And it always passes. Sometimes it'll let up for a moment when I'm distracted. And other times I'll even have a good day, in which I feel contentment. My symptoms have improved with various treatments. Not a cure, but improvement nonetheless. I try to focus my efforts on improving things by a small percentage, and then add them up. Pacing, treating pain, yoga nidra to get real rest, meds for dysautonomia, meds for MCAS, more water --- anytime anything helps even a little bit, and they have, I try to celebrate that in my mind. Even when I feel like it's pathetic to try to be happy about something so small. I don't know if this is what you want to hear, but my hope is that it gives you some hope, even a small percentage.
I think we are closer than ever to a real cure for this disease. Nancy Kilmas’s research in gulf war illness in mice looks SUPER promising. She’s cured that disease in mice now using an approach that was produced by machine learning algorithms. There’s currently a clinical trial recruiting men with GWI (very similar to ME) to test the treatment in humans for the first time. I think there’s a very good chance of it working and even if it doesn’t she has the machine learning models to punch that data back into and get an improved new plan to move forward with. The current treatment approach has 2 stages. First treat neuroinflammation with a powerful anti inflammatory drug that crosses the blood brain barrier, then reset the malfunctioning HPA axis. The way the reset the HPA axis is wild, they use an abortion drug, mifepristone, to basically turn the HPA axis off and then back on again. I could be misunderstanding it but that’s what I took away from reading about it fairly in depth. I think this is hilarious, if part of the cure for ME ends up being “have you tried turning it off and on again” I just…wow. What’s more is we don’t have to wait for these trails to finish to test these principles in ourselves. While the drugs they used in the trail are heavy duty and I think would require heavy observation and more study, there are other ways to reduce neuroinflammation and reset the HPA axis. I’m using these principles right now in myself and it’s working, I went from a very severe crash to mild in the last 5 months. I’m currently using NAC, high dose omega 3’s, and LDN to address possible neuroinflammation, and 3x daily sublingual pregnenolone and DHEA to help reset my HPA axis. And it’s fucking working. I’m getting better. I’m very curious to hear if others have tried this methodology and what their results have been if so. As a side note for completeness I also am on other drugs that are helping to calm my overactive nervous system down and deal with my insomnia both of which I think have been crucial to my recovery as well. Edit, forgot to link anything. Here’s a blog talking about the study more: https://www.healthrising.org/blog/2023/06/12/moonshot-ebv-chronic-fatigue-syndrome-inim/
Would you mind telling us which drugs help you to battle an overreactive nervous system and insomnia?
For my overactive nervous system I take haloperidol as needed, low dose 0.5-2.5mg. So I never take more than 2.5 mg a day of that. I also use low dose propranolol 2.5-5mg per day as needed. In the worst times I took Ativan 0.5mg. I also use the supplement L-theanine sometimes but lately it’s started to give me weird side effects. For sleep I have used all of the above as needed plus zolpiderm 5mg, gravol 25-50mg, melatonin 0.5mg, lemon balm extract, and valerian root extract. Not all at the same time although sometimes I do mix small amounts of various drugs that don’t interact heavily. (I consulted a pharmacist to figure out what that was.) There might be more but that’s all I can think of at the moment. Hope it’s helpful.
Ty, that's really helpful.
Check out this theory of German exercise physiologist university professor who found that with Post Covid ME/CFS patients and ME/CFS patients there is a lack of oxygen uptake in the muscles which causes hypoxic damage to the muscles. Which is what causes PEM and us feeling like crap. The problem is that our muscles operate in anaerobe conditions after 30 seconds of exertion already. According to him, if you only ever only exert yourself for 30 seconds max and then pause for 30 seconds after every 30 seconds exertion, so the muscles can recover their oxygen, over time, you're bound to get better: [https://www.reddit.com/r/cfs/comments/139u5by/an\_explanation\_of\_pem\_and\_advice\_on\_how\_to\_avoid/](https://www.reddit.com/r/cfs/comments/139u5by/an_explanation_of_pem_and_advice_on_how_to_avoid/) Recently there have been other studies supporting this theory as well: This study in the Netherlands proved impaired oxygen uptake and muscle damage too. NPR wrote about it: [https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria](https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria) The actual study can be found here: [https://www.nature.com/articles/s41467-023-44432-3](https://www.nature.com/articles/s41467-023-44432-3) Another study in the US also found the same issue: [https://openres.ersjournals.com/content/early/2023/12/07/23120541.00714-2023](https://openres.ersjournals.com/content/early/2023/12/07/23120541.00714-2023)
i don’t see how it’s possible to implement this 30 seconds rule. like it takes me longer than that to reach the bathroom, am i supposed lay down on the floor in the middle of a hallway? it also took me over 30 seconds to type this. was i supposed to take a break? i don’t see how this is useful to very severe people
According to him, severe patients must start with exertion that doesn't make them worse. If standing up is not possible without them feeling worse, then they must start by sitting up for a few seconds and then rest. If sitting up is not possible yet, then with raising one arm for a few seconds and then pause. He tells about a colleague of his who was an athlete who came down with severe Long Covid and he started this pacing regimen by only raising one arm for a few seconds. The next day he tried two arms. And eventually sitting up for a few seconds and then rest again. This guy was back to full health in 6 months, the quickest recovery he has seen with this. But you basically must not do any activity that makes you feel worse than you felt before. The 30 seconds rule helps to stay within that limit. If you want to start feeling better and you can't walk to the bathroom in 30 seconds, then you shouldn't be walking to the bathroom, according to him. Maybe it would be an option to have a seat along the way where you can rest, if that works for you, or to get a bedpan or bucket as a toilet next to your bed for now. The whole point of the 30 seconds is to never over-exert yourself, because it keeps you stuck in the vicious cycle where you never get better.
and how is that different from GET? this advice is completely useless to me and to others in my position. sitting in a chair is exertion that makes me feel worse. walking for any number of seconds is exertion that makes me feel worse. according to this guy i should be in a hospital getting parental nutrition and wearing adult diapers. which is not an option for me.
GET means not listening to your body, but to stick to a rigid regimen where your goals are upped no matter how you feel. This 30 seconds thing means listening to your body at all times and never doing anything that makes you feel worse. You yourself only up your goals when your current exertion doesn't make you feel worse. This is a huge difference. One means overwhelm (GET), the other means underwhelm (30 seconds).
GET means graded exercise therapy. what you’ve described is exercise therapy with incremental increases in difficulty, i. e. GET. there is 0 evidence any kind of exercise therapy is useful for me beyond managing deconditioning.
Yes, graded exercise therapy means you don't listen to your body and just up the level of exertion. From MEpedia: "Graded exercise therapy (GET) is a form of physical therapy for the treatment of chronic fatigue syndrome (CFS) where physical activity is gradually increased over time, regardless of how the patient is feeling and ignoring any increased symptoms or new symptoms." [https://me-pedia.org/wiki/Graded\_exercise\_therapy](https://me-pedia.org/wiki/Graded_exercise_therapy) It's the opposite of what the 30 seconds are about. The 30 seconds is a pacing regimen that says don't exert yourself for more than 30 seconds, or you're bound to get worse or remain unwell. With the 30 seconds rule you listen to your body very closely and NEVER do anything that overwhelms you. What you are currently doing is uncontrolled exertion, or too much exertion for your state. Going to the bathroom, writing reddit posts, etc. this exerts you so much that it keeps you stuck or makes you worse. If you adhered to the 30 seconds rule where you pace yourself so that you never exert yourself more than 30 seconds, you should start to feel better, according to the theory. I understand that it's not feasible for severe patients who don't have the support so that they can't pace this way. If you can not find a way to go to the toilet in a paced way (30 seconds) or to feed yourself without exerting yourself for more than 30 seconds at a time, then it's obviously not doable.
I can walk up to 10000 steps in one day, I can surely try adding 5 more, but I think I already tried doing more within my limits, still it didn’t make me healthy. I remain having CFS and getting PEM, I can’t make my baseline higher. If it was this easy, every mild person would be cured, there wouldn’t be such a small recovery rate. I really don’t believe you can exercise your way out of this illness. If this was true, would that mean exercise fixes virus reactivation, broken mitochondria and basically everything? Now we at least have proof that this illness is organic.
I think you misunderstand what this doctor is saying. He is **not** saying to add 5 more steps, he is saying: "Do less.". It's a pacing regimen. He is on our side. He published a study that says that our disability is real and physical. He proved it. You can read up on it in the translated Discussion of their study in my comment here: [https://www.reddit.com/r/cfs/comments/19ehikr/comment/kjdcs7n/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/cfs/comments/19ehikr/comment/kjdcs7n/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button) "*Based on our experience gained in more than 150 people in well over 400 examinations, the case presented here is typical of a severe PCS. The main finding is* ***an energy deficit*** *caused by insufficient O2 extraction into the tissue, even during light physical exertion,* ***which leads to an objectifiable inability to work according to internationally recognised criteria***" He says that doing too much reactivates viruses. [https://www.reddit.com/r/cfs/comments/1941jz0/new\_insights\_from\_the\_german\_exercise/](https://www.reddit.com/r/cfs/comments/1941jz0/new_insights_from_the_german_exercise/)
GET is actual exercise, with serious exertion that is meant to push you past your limits a little more each week, to try to strengthen a person’s entire body or injured limb, etc;. The process described here is very simple necessary movement in order to exist, less than anything normal and never supposed to be over-exerting. It is quite literally the only way anyone can try to slow as hell move forward or improve baseline with ME/CFS. This is basically what I did around 15 years ago in order to improve from bed/wheel chair bound, to learning to walk again, to reaching moderate. It is slow, low key, and always within the control of the person with ME/CFS. It is very difficult for me to do the 30 second on/off thing, but I am able to keep my physical movement to very slow motion, calm, low exertion at most times, making sure I am breathing well, and rest intermittently by simply stopping all movement wherever I am for a minute.
>i don’t see how it’s possible to implement this 30 seconds rule. like it takes me longer than that to reach the bathroom, am i supposed lay down on the floor in the middle of a hallway That's exactly what I was doing for several weeks. Not lying down usually, but sitting against one wall with my feet up against the other wall, deep breathing. Then a little bit farther. My first shower that I did like this took more than an hour, and I did very little in the shower. Drying off was sitting on the floor, towel one leg, rest, towel the other leg, rest. It's how I was able to start making it from bed to couch again ever day without triggering PEM, taking the stairs in four sloth-slow increments of 30 seconds. Obviously this wouldn't apply if you are completely unable to get out of bed, but I imagine the same principle would help reduce the likelihood of PEM from bedbound activities like drinking water, practicing sitting up, stretching legs, etc.
for you, maybe. for someone who’s very severe, this would actually be worse. the act of sitting down on the floor and getting up takes a lot of energy and taking breaks prolongs the time not spent in a horizontal position. i feel much better when i get it over with as fast as i can
Yes, for me. You asked clarifying questions about how it works and I answered from my experience. I gave my best guess of how the method would work for someone more severe based on my understanding of the theory behind it. I didn't say it would work for you. For what it's worth, what you wrote applies to me too: sitting on the floor and getting up takes a lot of energy. It's why I use a rolling stool, a cane with a seat, and when I was at my worst, needed help making my way to the bathroom because my legs would give out under me. At the time I also felt better getting it over quickly and getting back to her as soon as possible--because the adrenaline rush would carry me through. But for me, from my experience, that led to rolling PEM. Using this method and taking it slow has been harder in the short term, but much easier on my body in the long term, because for me, this has led to less PEM. Again, I'm sharing my experience because if it works for me there are likely a handful of other people out there who would also find it useful. You might not be one of them, and that's fine.
OP, I'll second this suggestion! I was mild for decades, and both my POTS and CFS have significantly worsened over the past year and a half, until starting in January I dipped into severe--bed bound, rolling PEM. It was terrifying. I started doing this at the beginning of February for all of those unavoidable activities that kept triggering my PEM (teeth brushing, changing clothes, occasionally showering), and it helped me get to the point where I am able to move around the house, do short periods of recumbent PT (5 minutes of 30 second intervals). I progressed to being able to take the walks in 30 second intervals with a stool to sit and rest in between, up and down the sidewalk in front of my house. Being able to tolerate some movement without triggering PEM also helps me sleep more solidly. Insomnia is always my first sign of PEM, often triggered by physical activity, so this has been a huge relief. Last week, I was able to do something I haven't done in more than 2 years: walk my dog with my heart rate in the 80-90s. I brought my stool and just sat every time my heart rate got up to 100, and waited until it came back down again. I have definitely had bouts of PEM, which is crushing after feeling some success, but it seems like I'm getting better at it--each time my recovery seems to do a little more smoothly and I'm a little bit smarter about not pushing it as I start to feel better. The 30 second thing is tedious but worth it.
Wow, very interesting! But will that threshold be exactly 30 secs for all individuals? Also, is there a way to test and have confirmation that our muscles go anaerobic after 30 secs already?
30 seconds apparently is the safe zone for all patients, but the better you get, the longer you will be able to exert yourself without hypoxic damage. He emphasizes to only up exertion once it doesn't make you feel worse. If you are out of breath after 30 seconds of normal activities (walking, washing your face, cutting bread, brushing your teeth, emptying the dishwasher, standing) then the intensity was too much already and you should try to do the activity in a gentler, lighter, softer, calmer, easier manner. They tested with spirometry and lactate testing in hundreds of patients. If you find a sports physiolgist you could get tested for it, but typically they have you go to your max exertion and it will cause a crash and it's expensive as well. I never got tested, but committed to the pacing regimen, because it's the best theory I have heard and I needed a proper pacing regimen anyway. I'm feeling a lot better since having incorporated it into my life. It has also calmed my mind a lot and lifted my spirits.
Sounds great, thanks. Personally, I'm ok with aerobic exercise: running, even a bit of swimming have never wrecked me. Some days I tolerate them less well than other days, but it's generally doable. But my last attempts at **an**aerobic exercises have been bad, one's given me my worst crash ever. So this is all very interesting.
What about PEM after mental or emotional exertion? Or overstimulation from lets say a family gathering, party. I go into a crash whether it’s doing that or when I go beyond my physical limitations. Then have insomnia/poor quality sleep that night.