Thank you so much for this informative video. The only things I would add are the fact that adrenaline can mask immediate PEM symptoms, so patients can't necessarily rely on how they're feeling in the moment to properly pace; and that repeated episodes of PEM can lead to a permanent worsening of the patient's baseline of functioning.
Yes, this is so true. Some people call it the ‘tired and wired’ phase. With time one can learn to recognise this phase too although being in this phase means that you have already overdone it so should stop and rest asap. I would add that with the Orthostatic Intolerance in the mix too it can be very hard to know when you’re overdoing it because your brain is under functioning due to its lack of perfusion (blood flow). Confusion reigns.
Can small and managable PEM actually be useful and help build new capacities in long term, or rather any for of PEM even mild should be avoided at any cost? Because, based on my personal experience, activities that cause only one day PEM crash and then after that again I feel normal, if repeated, over time don't cause PEM anymore for me. Maybe this is the natural adaptation mechanism of body, which even in healthy people, exercise that is not too intensive, initially induces oxidative stress, and then body tries to adapt and adjust by increasing metabolic and aerobic capacity ("healthy oxidate stress"), but even in healthy individuals, too much oxidative stress is detrimental and reduces our insulin sensitivity and aerobic capacity.
Recognising immediate symptoms can be even more difficult when affected by Orthostatic Intolerance as well. When the brain is hypo perfused (when upright) one is losing cognitive awareness. I find I’ve already overdone it before I’ve recognised symptoms as my brain is not connecting the dots properly.
My warning sign to lay down is the heat sensation up my spine that increases as the base of my head. I’m in the severe stage. However, I finally think I figured out pacing. So hopefully now I won’t lose anymore battery life. I’m at a 30% battery and a 1.0 functional capacity.
It’s, unfortunately, a bit misleading when you say pacing = “minimal consequences”. In actuality, pacing equals a lessening of consequences, not “minimal consequences”. ‘Minimal consequences’ can only happen if you have very mild PEM/PESE.
I’m in your area, I have ME/CFS for 35 years, I desperately need help. My doctor is not interested in learning about it. how can I find a doctor that has been trained? Thank you so much.
I’m 60 and after having PEM most of my life, I am now in a severe state of ME. I’m hanging on by a thread without any recognition or support. I live near Indianapolis and physicians at Indiana University health are clueless.
❤Thank you for a great video. I still struggle with pacing, finding my baseline. May I ask your opinion on something, a therapy a friend recommended to me, it is called bemer therapy? Have you had ME patients try that and how did they react…? Thank you❤
BEMER? I had to look it up. Looks like it’s a type of PEMF Therapy (pulsed electromagnetic field therapy). Seems like some people improve with it, some see no improvement, and some get worse. There’s really no way to know. “BEMER sends a low intensity pulsed electromagnetic field into the body in order to safely stimulate healthy muscles which can temporarily increase microcirculation.*” “Benefits Muscles are stimulated and contracted. This temporarily supports local blood circulation, better supplying cells with oxygen, and removing CO2.”
A chiropractic neurologist can help get to the bottom of and repair the damage/dysfunction that’s causing the OI. Compression socks, salt and the rest of the usual advice barely help at all, at least for me. It’s just a ‘sticking plaster’. These kind of docs exist in America but not in many other countries, unfortunately.
What a joke! 😡 Yet another doctor basically telling us, "Play dead! That'll do it!" 🙄 How about we find the roots issues and treat that instead of band-aiding the issue? I've been dealing with this for 28 years and I'll tell you what happens.. A body at rest stays at rest. When you pace you find yourself pacing more and more, when some of you already can't even get out of bed. Over time it lowers and lowers your threshold for activity, you lose muscle, and your body deconditions on top of this. I wouldn't be able to survive off pennies of US disability so I have to be accountable for work as the sole support for my household. They don't let me trickle through my work day and take naps every 5 minutes, and caring for my kid doesn't magically pause. Sometimes life doesn't give us the option to pace! We need to identify root cause for each person for proper treatment. We need better insurance covered, in depth workups. If reading an hour leads to cognitive issues swap to doing several harder brain solving puzzle games throughout the day at mid length intivals. If biking hurts, swap to a trike with proper hydration and snack breaks. When yall speak of pacing, you speak of it in the form of just doing less rather than really altering each method. Baby steping through life is usually not practical for most. I think the conversation should be more towards quality over quantity.. ways to modify the must do activity VS mainly lower or eliminate. You don't maintain muscle from stagnation, you atrophy like old folks put in nursing home beds. We are currently delt a double edge sword yall seem to be glossing over there. The shower chair idea was the only decent suggestion (which I already use), however even showering in a chair can be exhausting! The better advice would be get a shower chair, a duel shower head with a seprate handheld sprayer that mounts on the shower wall, lower the water temp not to overheat and stay cooler, to keep blood from pooling elevate legs now and then when able, wash your body in a separate shower then washing your hair *if you can* to reduce length of shower time, lie or sit and relax a few moments before dressing because dressing is exhausting (robes help), towel dry or sit to dry hair, shorter hair is less to manage and reduces dry or styling time, dry shampoo your hair halfway through the same day you wash it or before sleep, use a silk bonet for hair during sleep (it will reduce tangles to fight and the dry shampoo will soak up oil between washes VS trying to fight it once it's already oily), etc. If you're going to give advice, don't half-** it.
I’m dealing with the double edge sword! I’ve been resting in bed for a couple weeks after a crash, but now I’m dealing with weakened muscles and worsened POTS. I have to keep moving AND I have to pace. Thank you for your comment.
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Thank you so much for this informative video. The only things I would add are the fact that adrenaline can mask immediate PEM symptoms, so patients can't necessarily rely on how they're feeling in the moment to properly pace; and that repeated episodes of PEM can lead to a permanent worsening of the patient's baseline of functioning.
Yes, this is so true. Some people call it the ‘tired and wired’ phase. With time one can learn to recognise this phase too although being in this phase means that you have already overdone it so should stop and rest asap.
I would add that with the Orthostatic Intolerance in the mix too it can be very hard to know when you’re overdoing it because your brain is under functioning due to its lack of perfusion (blood flow). Confusion reigns.
Can small and managable PEM actually be useful and help build new capacities in long term, or rather any for of PEM even mild should be avoided at any cost? Because, based on my personal experience, activities that cause only one day PEM crash and then after that again I feel normal, if repeated, over time don't cause PEM anymore for me. Maybe this is the natural adaptation mechanism of body, which even in healthy people, exercise that is not too intensive, initially induces oxidative stress, and then body tries to adapt and adjust by increasing metabolic and aerobic capacity ("healthy oxidate stress"), but even in healthy individuals, too much oxidative stress is detrimental and reduces our insulin sensitivity and aerobic capacity.
This is so very helpful, also the comments:) Thank you for doing this and thank you for interesting, helpful comments.
Agreed on both. Adrenaline surges must be added, and, PEM episodes are known to be cumulative.
I want to know this too- should I avoid all PEM at all cost, or is it ok to have mild PEM and build up resistance?
This is needed to oppose the general ignorance of the existence of PEM among the medical establishment overall
The 30% cell phone is a good analogy. I understand spoon theory, but it's a little hard for people to understand.
Physicians need to be educated about PEM/ ME.
Recognising immediate symptoms can be even more difficult when affected by Orthostatic Intolerance as well. When the brain is hypo perfused (when upright) one is losing cognitive awareness. I find I’ve already overdone it before I’ve recognised symptoms as my brain is not connecting the dots properly.
My warning sign to lay down is the heat sensation up my spine that increases as the base of my head. I’m in the severe stage. However, I finally think I figured out pacing. So hopefully now I won’t lose anymore battery life. I’m at a 30% battery and a 1.0 functional capacity.
Excellent and ACCURATE information.
Your videos are amazing! Thank you for keeping them short and to the point.
PEM is the cardinal symptom of ME/CFS and Dr. Powers should have stated that clearly in his explanation of PEM.
This is fantastic! Well done!!
Thank you for this information 🙏🏾
Thank you 💛
It’s, unfortunately, a bit misleading when you say pacing = “minimal consequences”. In actuality, pacing equals a lessening of consequences, not “minimal consequences”. ‘Minimal consequences’ can only happen if you have very mild PEM/PESE.
Agreed. And in severe ME, PEM is near/almost continuous and ongoing, without reprieve.
@@Bea_Survivor horrendous, i feel so sorry for those people
I’m in your area, I have ME/CFS for 35 years, I desperately need help. My doctor is not interested in learning about it. how can I find a doctor that has been trained? Thank you so much.
I hope you find a trained doctor, I’m in europe and have diagnosed ME too. Sending love❤️🩹
Same, desperately needing help in Indianapolis.
I’m 60 and after having PEM most of my life, I am now in a severe state of ME. I’m hanging on by a thread without any recognition or support. I live near Indianapolis and physicians at Indiana University health are clueless.
@@Zkbbkzzz This breaks my heart to hear! 😣😥❤️🩹❤️🩹❤️🩹
This is what I have. ME/CFS.
So sorry you have myalgic E. This is a horrible condition.
❤Thank you for a great video. I still struggle with pacing, finding my baseline. May I ask your opinion on something, a therapy a friend recommended to me, it is called bemer therapy? Have you had ME patients try that and how did they react…? Thank you❤
BEMER? I had to look it up. Looks like it’s a type of PEMF Therapy (pulsed electromagnetic field therapy). Seems like some people improve with it, some see no improvement, and some get worse. There’s really no way to know.
“BEMER sends a low intensity pulsed electromagnetic field into the body in order to safely stimulate healthy muscles which can temporarily increase microcirculation.*”
“Benefits
Muscles are stimulated and contracted. This temporarily supports local blood circulation, better supplying cells with oxygen, and removing CO2.”
Patients in America are not getting help either.
A chiropractic neurologist can help get to the bottom of and repair the damage/dysfunction that’s causing the OI. Compression socks, salt and the rest of the usual advice barely help at all, at least for me. It’s just a ‘sticking plaster’. These kind of docs exist in America but not in many other countries, unfortunately.
What a joke! 😡 Yet another doctor basically telling us, "Play dead! That'll do it!" 🙄 How about we find the roots issues and treat that instead of band-aiding the issue? I've been dealing with this for 28 years and I'll tell you what happens.. A body at rest stays at rest. When you pace you find yourself pacing more and more, when some of you already can't even get out of bed. Over time it lowers and lowers your threshold for activity, you lose muscle, and your body deconditions on top of this.
I wouldn't be able to survive off pennies of US disability so I have to be accountable for work as the sole support for my household. They don't let me trickle through my work day and take naps every 5 minutes, and caring for my kid doesn't magically pause. Sometimes life doesn't give us the option to pace!
We need to identify root cause for each person for proper treatment. We need better insurance covered, in depth workups.
If reading an hour leads to cognitive issues swap to doing several harder brain solving puzzle games throughout the day at mid length intivals. If biking hurts, swap to a trike with proper hydration and snack breaks. When yall speak of pacing, you speak of it in the form of just doing less rather than really altering each method. Baby steping through life is usually not practical for most.
I think the conversation should be more towards quality over quantity.. ways to modify the must do activity VS mainly lower or eliminate. You don't maintain muscle from stagnation, you atrophy like old folks put in nursing home beds. We are currently delt a double edge sword yall seem to be glossing over there.
The shower chair idea was the only decent suggestion (which I already use), however even showering in a chair can be exhausting! The better advice would be get a shower chair, a duel shower head with a seprate handheld sprayer that mounts on the shower wall, lower the water temp not to overheat and stay cooler, to keep blood from pooling elevate legs now and then when able, wash your body in a separate shower then washing your hair *if you can* to reduce length of shower time, lie or sit and relax a few moments before dressing because dressing is exhausting (robes help), towel dry or sit to dry hair, shorter hair is less to manage and reduces dry or styling time, dry shampoo your hair halfway through the same day you wash it or before sleep, use a silk bonet for hair during sleep (it will reduce tangles to fight and the dry shampoo will soak up oil between washes VS trying to fight it once it's already oily), etc.
If you're going to give advice, don't half-** it.
I’m dealing with the double edge sword! I’ve been resting in bed for a couple weeks after a crash, but now I’m dealing with weakened muscles and worsened POTS. I have to keep moving AND I have to pace. Thank you for your comment.
So unhelpful. We are people not “individuals” in your spreadsheet. The “management “ of symptoms presented here offers no ideas for recovery.