In nearly 25 years of living with myalgic encephalomyelitis, this is the best presentation on PEM I've ever seen (including what I've written myself). Thank you for this. I hope that other doctors can be persuaded to educate themselves by watching it, so they can provide better care to their ME/cfs and Long Covid patients.
This is by far the best presentation on Post Exertional Malaise I've ever seen! Is there any way this exact video could be disseminated to medical personnel or other's working in the front line of ME services?? I know it's available here but they would have to look for it. I immediately wanted everyone who's ever had anything to do with my care to see this video. Because people REALLY don't et it!
Excellent explanation, you nailed it! As a person living with M.E. for 33+ years, I SO appreciate BHC's resources, support groups & outreach. Thank you 🙌🏻
Thank you for providing the right information. There is a whole new wave of long Covid “experts” saying it’s all neural brain retraining and to just exercise through .. and that is wrong! If we could exercise we would be ! Thank you for posting the correct information for the safety and understanding for patients.
Oh my word,THIS is me ,not able to escape a house fire if I needed to 🔥 😮 THANK YOU SO MUCH FOR THIS .I wish everybody would watch it.😢 it should be on TV 📺
This video seems very accurate. Good job. One of the most important things that keeps me from getting sicker is the freedom to choose what activities I do and to choose what activities I won't do. Being able to rest whenever I want to for as long as I want to is the most important thing for fighting the symptoms of this illness.
This is a brilliant presentation on PEM. People really don’t get it AT ALL. When they see you at a social event looking totally “healthy” one week they can’t wrap their brains around why you can’t join again the following week. It’s because I’m now in a crash bedridden and feel like I’m dying. I’ve gone from mild to severe to moderate. It’s really all so unpredictable. I am the one who has a few good days or weeks and then gets blindsided by a debilitating crash. I was bedridden for 2 months once. I can’t seem to get it through people’s heads that even though I look normal I cannot attend that dinner or social gathering. I have used the house fire analogy myself! This truly is an evil disease.
Very good video. 10 years+ of ME here and this is complete and really helpful. Sent it to my doctor, my physical therapist and my psychologist 😊 I have personnally learned how to deal with it in a better way. Thank you 🙏
Thank you for this vert important information, It was so helpful to me. I have been living with CFS/Fibromyalgia and PEM episodes for 7 years. I would push myself to exercise and not pay much attention to my PEM, until it worsened and my quality life was affected. I was told by many doctors to increase my exercise to produce a healthier me. I had been a fitness instructor for 25 years and I believed too that an exercise routine would heal me. I now know how harmful it was/is to me. This video was exactly what I needed to understand that pacing my days will be my new routine.
Radical rest is essential.Essential.It's the Only strategy that helps keep me from regularly crashing.I have moderate level ME for eleven years.Baths +sauna blanket (Koanna is the make that's available in Ireland.. it's a European brand) help with the bone crushing winter pain. Best of luck.
Absolutely brilliant! I'm one of those who keep pushing and pushing and pushing. Feels like it's expected of me to "get up, stay up and do things" instead of recover. A shower, conversation, call, sending an email, being around people / noise results in PEM. The result is devastating. The all over pain is excruciating, the cognitive impairment devastating, breathlessness so much worse, headaches on a different level. Wish all doctors could be this informed, sympathetic and supportive. Thank you for this!!!
I’m glad that there is a more scientifically detailed explanation from a medical standpoint of PEM. A sticking point for me, & possibly many other patients. It would only be in an ideal world that we can spend two months avoiding PEM . Not all of us have round-the-clock Carers or people who can be with us to make all our food or see to our homes and families. It’s a very nuanced challenging area of how to deal with M.E and long Covid . Not everyone understands the intersectionality that some of us live through (we may be disabled in other ways. We may be parents to those who have needs-the list goes on). Sometimes there’s no way of avoiding going to physical medical appointments (because many of us have comorbidities and other major diseases ) either which can be very taxing no matter how much you do to minimise exertion. There are a lot of social aspects as well that can mean people go outside of their safer pacing area. All of this to say I’m not discounting the very real and solid understanding here from a centre like this (I’m not aware of anything like this in the UK where I’m based) . I know that a clinic like this is doing their best until there is pharmacological interventions that are widely clinically trialed and tested for TRUE efficacy. It’s just such a complex arena.
Thank you for this validating & informative video! A lot of this is what my ME Dr out of Stanford told me. But, I wanted to know HOW to work w this crushing illness. Be mindful of energy battery / envelope Never let battery drain completely Pacing Pacing Pacing Surrender to state of PEM Embrace radical rest So, maybe even tracking body battery and using that as tool along WITH our symptom inventory & severity. Just because you CAN do an activity, does not mean you SHOULD Modify every single activity to minimize energy use on CELLULAR level!!! Becoming so deliberate in daily existence that we adopt it as default & stay out of PEM. Not easy, but so worth it. Thank you for this tool❤
Yeah, well doctors didn’t get me diagnosed till I was in the severe stage housebound/bedbound and now I’m worse. I don’t see myself getting better. I only see getting worse because that’s all that’s happening. My baseline is way too low. I can’t even function. It’s like dying every day, but you’re still alive.
I am so sorry you experienced this . It happens far too often with this illness. We cannot get diagnosed and we get terrible advice while looking for a diagnosis. We are trying to change that. Severe ME is something so hard for anyone to truly understand until they experience it or witness it first-hand.
I’m in the same boat. I was a healthy athletic health professional. Got long Covid and had untreated sinus turned brain infection and was told I was crazy by medical for 2 years keep pushing. until a pain doctor finally said MECFS and I was bedbound severe. It’s now year 5 of homebound, ruined life, no exercise, can’t do my profession. Living hell. Not getting better. Only worse. How do we as severe ever get better???? 😔
Thanks Dr Yellman. You have explained very well what we are going through and how to manage this condition. I need to show this to my family and friends to help them understand too
Yep, this is my world, going on 4th year. I am thankful I've calmed my carriage enough to only experience PEM one most days! ❤ Thank you for this excellent explanation video. My PEM is very low, being aware of my energy tank and realize thinking and keeping my eyes open can be harmful. Meditation and Sound Therapy help immensely.
Please do a video to instruct medical staff on how to treat patients experiencing PEM in clinical settings. Dim lights, recline patient, administer liquids & electrolytes, encourage calm & quiet. I cannot access medical care for anything because I crash in the exam room. I crashed in a clinical setting, I was grabbed, yanked to the floor, commanded to stand up, then finally placed in a wheelchair and dumped outside.
Omg! I was yelled at in the emergency waiting room to not lay down! I have severe ME/CFS long Covid and had acute Covid and couldn’t even sit up. They did not know or care and I said well then I will have to lay outside and they just left me there. Told me there was no help at the hospital for me. I am still traumatized from it over a year later, and still as sick and disabled every day. This disease is living hell. Seeing accurate videos like this is the only thing that keeps me going.
I've decided to survive in spite of what the medical establishment does to people with ME. There's been a concerted push towards eugenics in Western medicine. Medical staff are instructed to get rid of patients presenting with unprofitable billing codes. Medical care has gotten so bad I know I'm better off avoiding doctors, nurses & the whole deplorable medical system. I know there are some good doctors somewhere, but none in my area. Any good doctors have left this soul sucking system. BTW, I've gotten some PEM relief from LOLA supplements. Have you tried it?
Rather than a dollar a day, I would slmost say "only have a dollar for a moment of unknown length depending on the activity, intensity, weather, blood pooling, or suddeness of surprise onset activity or level of emotional or intellectual importance/intensity". Tolerability is based on smaller, shorter amount of any of the above followed by adequate rest and nutrition consistent with whatever just happened for mot too long. If going beyond "too long" or "too much" without adequate pause causes set back that takes even longer to recover.
September 14, 2024 This is the best explanation and advice I have heard on this topic. I have been searching for information for almost 4 years now and I am very grateful, thank you for sharing 🩷
Dr Brayden Yellman sounds like the type of doctor, all of us people with M.E/CFS/LongCovid need.
FINALLY a doctor who actually appears to understand.
In nearly 25 years of living with myalgic encephalomyelitis, this is the best presentation on PEM I've ever seen (including what I've written myself). Thank you for this. I hope that other doctors can be persuaded to educate themselves by watching it, so they can provide better care to their ME/cfs and Long Covid patients.
This is by far the best presentation on Post Exertional Malaise I've ever seen! Is there any way this exact video could be disseminated to medical personnel or other's working in the front line of ME services?? I know it's available here but they would have to look for it. I immediately wanted everyone who's ever had anything to do with my care to see this video. Because people REALLY don't et it!
th-cam.com/video/D75Tf7r92oY/w-d-xo.html
Yes, that is the goal and we are in conversation with different institutions about this.
Excellent explanation, you nailed it! As a person living with M.E. for 33+ years, I SO appreciate BHC's resources, support groups & outreach. Thank you 🙌🏻
You should check out the releasecfs program, it basically healed me in 12 months.
Thank you for providing the right information. There is a whole new wave of long Covid “experts” saying it’s all neural brain retraining and to just exercise through .. and that is wrong! If we could exercise we would be ! Thank you for posting the correct information for the safety and understanding for patients.
Oh my word,THIS is me ,not able to escape a house fire if I needed to 🔥 😮 THANK YOU SO MUCH FOR THIS .I wish everybody would watch it.😢 it should be on TV 📺
This video seems very accurate. Good job.
One of the most important things that keeps me from getting sicker is the freedom to choose what activities I do and to choose what activities I won't do. Being able to rest whenever I want to for as long as I want to is the most important thing for fighting the symptoms of this illness.
This is a brilliant presentation on PEM. People really don’t get it AT ALL. When they see you at a social event looking totally “healthy” one week they can’t wrap their brains around why you can’t join again the following week. It’s because I’m now in a crash bedridden and feel like I’m dying. I’ve gone from mild to severe to moderate. It’s really all so unpredictable. I am the one who has a few good days or weeks and then gets blindsided by a debilitating crash. I was bedridden for 2 months once. I can’t seem to get it through people’s heads that even though I look normal I cannot attend that dinner or social gathering. I have used the house fire analogy myself! This truly is an evil disease.
Very good video. 10 years+ of ME here and this is complete and really helpful. Sent it to my doctor, my physical therapist and my psychologist 😊 I have personnally learned how to deal with it in a better way. Thank you 🙏
Thank you for this vert important information, It was so helpful to me. I have been living with CFS/Fibromyalgia and PEM episodes for 7 years. I would push myself to exercise and not pay much attention to my PEM, until it worsened and my quality life was affected. I was told by many doctors to increase my exercise to produce a healthier me. I had been a fitness instructor for 25 years and I believed too that an exercise routine would heal me. I now know how harmful it was/is to me. This video was exactly what I needed to understand that pacing my days will be my new routine.
Radical rest is essential.Essential.It's the Only strategy that helps keep me from regularly crashing.I have moderate level ME for eleven years.Baths +sauna blanket (Koanna is the make that's available in Ireland.. it's a European brand) help with the bone crushing winter pain. Best of luck.
Absolutely brilliant! I'm one of those who keep pushing and pushing and pushing. Feels like it's expected of me to "get up, stay up and do things" instead of recover. A shower, conversation, call, sending an email, being around people / noise results in PEM. The result is devastating. The all over pain is excruciating, the cognitive impairment devastating, breathlessness so much worse, headaches on a different level.
Wish all doctors could be this informed, sympathetic and supportive. Thank you for this!!!
As a patient, I truly appreciate your thoroughness with which you explained PEM. I think I will share this with my primary care provider. Thank you!
Thank you so much for this information! So helpful for me to manage my symptoms and to also explain to my family and friends
I’m glad that there is a more scientifically detailed explanation from a medical standpoint of PEM.
A sticking point for me, & possibly many other patients. It would only be in an ideal world that we can spend two months avoiding PEM . Not all of us have round-the-clock Carers or people who can be with us to make all our food or see to our homes and families. It’s a very nuanced challenging area of how to deal with M.E and long Covid . Not everyone understands the intersectionality that some of us live through (we may be disabled in other ways. We may be parents to those who have needs-the list goes on). Sometimes there’s no way of avoiding going to physical medical appointments (because many of us have comorbidities and other major diseases ) either which can be very taxing no matter how much you do to minimise exertion. There are a lot of social aspects as well that can mean people go outside of their safer pacing area.
All of this to say I’m not discounting the very real and solid understanding here from a centre like this (I’m not aware of anything like this in the UK where I’m based) . I know that a clinic like this is doing their best until there is pharmacological interventions that are widely clinically trialed and tested for TRUE efficacy. It’s just such a complex arena.
I’m watching this while recovering from a cold and Thanksgiving. All of this resonates with me. Excellent presentation.
This is absolutely excellent. I wish everyone involved in my care would watch this - especially my care agency.
Thank you for this validating & informative video! A lot of this is what my ME Dr out of Stanford told me. But, I wanted to know HOW to work w this crushing illness.
Be mindful of energy battery / envelope
Never let battery drain completely
Pacing
Pacing
Pacing
Surrender to state of PEM
Embrace radical rest
So, maybe even tracking body battery and using that as tool along WITH our symptom inventory & severity.
Just because you CAN do an activity, does not mean you SHOULD
Modify every single activity to minimize energy use on CELLULAR level!!!
Becoming so deliberate in daily existence that we adopt it as default & stay out of PEM.
Not easy, but so worth it.
Thank you for this tool❤
Yeah, well doctors didn’t get me diagnosed till I was in the severe stage housebound/bedbound and now I’m worse. I don’t see myself getting better. I only see getting worse because that’s all that’s happening. My baseline is way too low. I can’t even function. It’s like dying every day, but you’re still alive.
I am so sorry you experienced this . It happens far too often with this illness. We cannot get diagnosed and we get terrible advice while looking for a diagnosis. We are trying to change that. Severe ME is something so hard for anyone to truly understand until they experience it or witness it first-hand.
I’m in the same boat. I was a healthy athletic health professional. Got long Covid and had untreated sinus turned brain infection and was told I was crazy by medical for 2 years keep pushing. until a pain doctor finally said MECFS and I was bedbound severe. It’s now year 5 of homebound, ruined life, no exercise, can’t do my profession. Living hell. Not getting better. Only worse. How do we as severe ever get better????
😔
Continuing to push, based on doctor’s advice, kept me in PEM. My baseline is so low now.
Thanks Dr Yellman. You have explained very well what we are going through and how to manage this condition. I need to show this to my family and friends to help them understand too
What a wonderful video! Thank you for making this and sharing it. This has been so helpful. I wish I had understood all this years ago. 🙏😊❤️
This is such an excellent summary. Thank you!
Thanks so much for this. So helpful and affirming.
Thank you!!!
Brilliant!!!
Orthostatic Intolerance and the feeling of body heaviness are symptoms of Dysautonomia/POTS.
Utterly utterly invaluable, thank you. x
I wish I could find a DR like you!! 😢
Yep, this is my world, going on 4th year. I am thankful I've calmed my carriage enough to only experience PEM one most days! ❤
Thank you for this excellent explanation video. My PEM is very low, being aware of my energy tank and realize thinking and keeping my eyes open can be harmful. Meditation and Sound Therapy help immensely.
Please do a video to instruct medical staff on how to treat patients experiencing PEM in clinical settings. Dim lights, recline patient, administer liquids & electrolytes, encourage calm & quiet. I cannot access medical care for anything because I crash in the exam room. I crashed in a clinical setting, I was grabbed, yanked to the floor, commanded to stand up, then finally placed in a wheelchair and dumped outside.
Omg! I was yelled at in the emergency waiting room to not lay down! I have severe ME/CFS long Covid and had acute Covid and couldn’t even sit up. They did not know or care and I said well then I will have to lay outside and they just left me there. Told me there was no help at the hospital for me. I am still traumatized from it over a year later, and still as sick and disabled every day. This disease is living hell.
Seeing accurate videos like this is the only thing that keeps me going.
I've decided to survive in spite of what the medical establishment does to people with ME. There's been a concerted push towards eugenics in Western medicine. Medical staff are instructed to get rid of patients presenting with unprofitable billing codes. Medical care has gotten so bad I know I'm better off avoiding doctors, nurses & the whole deplorable medical system. I know there are some good doctors somewhere, but none in my area. Any good doctors have left this soul sucking system. BTW, I've gotten some PEM relief from LOLA supplements. Have you tried it?
The second scenario at 6:00 is definitely the hardest to figure out and prevent. SO difficult
Fight smarter instead of harder.
Rather than a dollar a day, I would slmost say "only have a dollar for a moment of unknown length depending on the activity, intensity, weather, blood pooling, or suddeness of surprise onset activity or level of emotional or intellectual importance/intensity". Tolerability is based on smaller, shorter amount of any of the above followed by adequate rest and nutrition consistent with whatever just happened for mot too long. If going beyond "too long" or "too much" without adequate pause causes set back that takes even longer to recover.
Thank you for putting this into easy to understand terms and easy to follow steps. Do you see overseas patients via video or phone ?
I am not sure of the answer but Dr. Yellman works at The Bateman Horne Center so you might check on their website. batemanhornecenter.org/
I get severe malaise. It is in the name and you didn't mention it.
Thank you for this! Is there any studies about 2-day CPET in MCAS patients?
None that we are aware of
100%
September 14, 2024 This is the best explanation and advice I have heard on this topic. I have been searching for information for almost 4 years now and I am very grateful, thank you for sharing 🩷