Post-Exertional Malaise (PEM)
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- čas přidán 9. 07. 2024
- May 17, 2022
Bateman Horne Center has partnered with the University of Utah Health to conduct a Long COVID and Post-Viral Syndromes ECHO (Project ECHO). This series delivers information to healthcare professionals utilizing short didactics and case-based learning to enhance their ability to manage patients with long COVID, ME/CFS, FM, and related comorbid conditions.
In this presentation, Brayden Yellman, MD, reviews:
- The definition of PEM
- PEM presentation in post-acute sequelae of COVID-19 (PASC/long COVID), ME/CFS, and related post-viral syndromes (PVS)
- Triggers and PEM onset
- The science behind PEM: VAT reductions, decreased aerobic metabolism, altered cellular metabolism, neurobiological changes, dorsal midbrain activity post-exercise
- Clinical implications of PEM
- How to clinically manage PEM
Note to community members: We advise viewers to always speak with their medical care team prior to making any adjustments or changes to their current regimen.
Bateman Horne Center’s involvement in this program is made possible with the additional support of the Open Medicine Foundation.
I said the exact same thing ‘not being able to get out of my house if it was on fire’ to my GP and her comment was ‘oh I’m sure you would’ I said no I wouldn’t and she just looked at me as if I was mad! Hence I never went back, she had not a clue!
This was a huge bundle of information, and from personal experience, it was dead on. Friends, family, to some degree, medical g.p., and medical specialists think I'm a hypochondriac. To look at me, one would never suspect what I'm dealing with.
That's exactly describes my husband too. This is such a lonely disease. 🙄
This may be the best explanation (and backed up by scientific studies) . That I have heard. I’d love to get people to listen to this to understand. In particular that pushing through or graded exercise not only doesn’t work but most likely make the baseline of exhaustion worse. ( in this video around 29 to 30 something minutes). NHS Doctors and Nurses need to know this as well as DWP “health professionals” and “Decision Makers”
Every doctor should see this, thank you.
If only I could press the like button one million times!!!
when defining PEM, I wish they wouldn't only focus on fatigue. Dr. Yellman does a great job of expanding on it but it's not in the definition.
eta: this video is amazingly factual and based on research. I wish people in my life would actually watch it.
This is some of the best detailed explanation of this part of my illness I have ever seen. For it to come from an MD with a clear interest means a lot to me.
I sincerely hope there will be some breakthroughs soon, we have been left in limbo/ hell for too long
Thank you what an important webinar for everyone to understand. You have done such an amazing job to help those of us who suffer from PEM. I have spent 32 years of my life hearing from other people I am tired also. The fatigue I experience is so much more than what I would call fatigue. It feels as if this is how you would feel right before you die, as if your body does not have the capacity to function. As if you don't have enough blood flow or oxygen to your brain and organ and you are just done. It is very painful to me. I have been to so many doctors that have no idea what PEM even is. It brings much gratification that I am not making this up! I want to support as many Doctors as possible and researchers to help understand how devastating PEM can be to your life. I have been sick for 32 years and I hear all the time I am so tired also. This is so much different. I cannot thank you enough for sharing PEM in an easy way to understand for all of those who suffer, for husbands, wives, doctors and families. So many loved ones get frustrated with you thinking you are lazy which causes emotional damage to the person having the PEM and makes some marriages very hard. Thank you from my heart.
If your doctor doesn't believe you DON'T GO TO THEM ANYMORE. And write them a bad review online.
I report these symptoms to my primary doc and my rheumatologist. The diagnosis is always depression and that I need antidepressants.
Judi, you are in luck, there's help for your situation already. If you go to the CDC site and read the ME/CFS section you'll see specific handouts for you and your care providers. Most of this is covered by the CDC's 2015 diagnostic criteria, but very few doctors are aware of the disease at all, much less the criteria. Takes a long time to get this data to the front lines apparently. www.cdc.gov/me-cfs/index.html
@@LukeFisherGAS Thank you.
So true. And he advises to walk 5 km a day....
Yes, you are spot on! I have been so much better and push myself to work part time food delivery, where I pick and choose my times, however having to pay bills I push myself into PEM sometimes and I do my protocols to help. Once i start feeling better i still have to pace, but i have built up my threshold to a higher level by doing a little more each day and pacing. I have found supplementation, breath work, fresh air (ocean or nature trails) all to help. i have come so far, but it is still there after 2years almost with long covid. I do feel i have my life back compared to where i was. I am very grateful everyday. It is not always easy, there should be disability or income for us dealing with this, having to provide for myself and no family I can live with. The gov needs to help assist, i filed for disability over 1.5 years ago. The problem is how do you prove chronic fatigue, long covid, PEM. Where is the proof for them? I have 600 pages in medical documents and says i have long covid but no real test for these. This is a huge problem, not to mention the nueroinflammation and cognitive issues i still have and some days after PEM it is really bad.
I can totally relate and agree so much…
You are absolutely correct. After decades of suffering with ME/CFS, finally there's some real doctors and scientists researching these post viral symptoms. Thanks be to God we now have studies to prove it's not all in our heads and we are NOT hypochondriacs! Soon there may be that proof. Already they have proved that micro clots are in the CV and Long CV patients blood along with epithelial (vessel lining) damage. At least this is one good thing coming out of the CV pandemic, that CFS and including Long CV patients will get help. 🙏
I don't feel so alone
Thank you Dr Yellman, to the Bateman Horne center and to OMF. Thank you for sharing this important information with the community with humility, compassion and care.
Those who have Mast Cell diseases often have Post-Exertional Malaise (PEM) and the same symptoms that we see in those who have ME/CFS.
I think most people with ME/CFS have Mast Cell Activation Syndrome (MCAS). This is a common disease that is new and unknown to most doctors.
A few may have Systemic Mastocytosis which is a rare disease.
Mast cells are a white blood cell that is incredibly complex. On the surface of mast cells there are more than 200 different types of receptors. One of these is IgE which is linked to allergy.
Mast cells can release more than 1,000 different types of mediators, many of which are inflammatory mediators. One of these is Histamine H1 known from allergy.
A Mast Cell only contains about 50 different types of mediators that it can release fast. The around 1,000 other known mediators it must produce and release over time.
If you do something that triggers the Mast Cells, you can get a quick reaction if the Mast Cells release some the mediators it has stored in them.
If the Mast Cells have to produce the mediators and release them little by little, it is not certain that you will feel anything until the next day which could then be an explanation for PEM.
Thank you, this is the most comprehensive video I have found.
So glad I found this video!! Totally explains what I’ve been going through for over a decade. Been to pulmonologist, sleep studies, multiple cardiologists, nuclear scans, allergy testing and others. This is what I’ve been trying to say all along! Finally!!!
How do we find a doctor that understands and believes studies like this?
I've called a few places to ask if there's some kind of referral system for the doctors who have gotten the info from the CDC, I couldnt find anything. Im going to a new doctor this week, he graduated in 2016 so I have high hopes that he is open to just following the 2015 CDC ME/CFS guidelines, follow their diagnostic and treatment protocol and I'll be happy.
Exactly...
Naturopathic doctors are your best bet. Western medicine has next to nothing to offer to ME/CFS or long Covid patients.
Difficult
Make them watch this presentation. Johns Hopkins believes this. Now with long Covid, ME/CFS is being recognized
These are so great. Sending the entire series to my doc. Doubt she will watch them, but it's all I can do.
Thanks. I kept thinking I had become more and more lazy and making a big deal of my exhaustion post viral. It makes perfect sense.
This is so great. Thank you. I get PEM the day after cognitive/physical exertion, but while my body is zonked, it shows up in me mostly cognitively. Often, dramatically. I can't think, read, function, coordinate body movements, process info.
Very practical and understandable presentation. Thank you.
Excellent. Spot on. 👍
Fantastic, fantastic presentation. Thanks so much for uploading ❤️
What is my debilitating illness called Now? Until you suffer with this one cannot imagine the sheer hell our lives can be and progressively deteriorate.
Here's a concept Doctor's help us by writing a note for poor housing making us sick or medicate our pain , the only opioid crisis is with the chronic pain sufferer...you couldn't live a day in my shoes...
I'm done with being nice about a disease we know nothing about and doesn't exist accept to the patient who is suffering
nobody ever even cared about lyme disease I also have covid also 2yrs longhauler and 12 years chronic lyme cant take it anmore dont even go to docs anymore
It's sad because I am in fairly good condition, and used to body build years ago. Ive worked out for years. But if I do something like a light leg workout, or the stair climber, or push it too hard on pulldowns, or rows, I feel really sick and nervous when im done. I get home and I feel terrible. I have awful sleep, and wake up like ive been drinking all night. It feels like a terrible hangover...I need help
me too. long covid.
I hope you stopped exercising immediately! 🤞
Really good presentation, Dr Yellman 🙂 Will be asking my GP to watch it!
17:25 sensitivity to cortisol
This is exactly why I can't exercise in the mornings when cortisol is higher.
I can't eat in the morning. Complete loss of appetite.
Thank you so very much! This is so important for healthcarepersonal and others to learn about.
Excellent presentation. Thank you!!
Excellent info. Can someone post links to the studies referenced? Also, is this powerpoint available to download?
Thank you for this important webinar. Can you activate the automatic subtitles, so that health professionals around the world have access to the translations? Thank you very much
I have PEM without Fatigue. I would not describe myself as "tired" during a PEM episode, though I will "behave" as though I'm tired. I have an exacerbation of neurological symptoms that follows this pattern, including the 24-48 hour delay in onset, just without the fatigue. It's more like I'm sensitive to *movement* during the episode, which makes me behave as though I am tired.... laying around a lot.
Same. Can't get a CFS/ME dx because I don't have extreme fatigue (just regular fatigue), but PEM is wrecking me.
PEM is so inadequate. I like PENE (post exertional neuroimmune exhaustion). PESE (post exertional symptom exacerbation) might sit better with you.
This is good information 👍🏻
Lord help me. Also I didn't hear him say short of breath as a symptom but it's one of my worst.. Of many. My brain is always ringing or stuffy
I feel short of breath as if I'm winded without being winded; I mean, if I breathe deeply, it's easy to breathe deeply but it feels like I'm in an oxygen poor environment because even if I breathe deeply, I don't feel oxygenated. If that makes sense. It's like hypoxia without dyspnea, which was a symptom of COVID. Can you get an oximeter to measure your blood oxygen saturation (SpO2) ?
@@myotherusername9224 yes, I have the same thing. I have a pulse ox my oxygen is usually good, there have been a few times in the past 6 years it has dropped too low after exertion, like once I tried to shovel the drive it was 89... Most of the time It's 95 and up. Typically it's 97 and up. But there have been a few times it's dropped.
@@lessons9745 I'm starting to think it might be mitochondrial dysfunction. look up methylene blue.
@@myotherusername9224 yes, I have thought that is part of the issue
@@myotherusername9224 x
I just found out this is a thing I’ve been diagnosed with pots for awhile and the symptoms just seem to be getting worse even tho I’m doing more and more to make myself get better. someone told me to look up symptoms of this and I’m gunna like cry because I relate to this so much. I have to see if I can talk to a doctor about this because I really feel like I found an answer and things have been so incredibly hard that even finding an answer or a reason I’m like this would be amazing.
The name has malaise in it but you don't mention malaise has a symptom which I get severely.
What dosage of dextromethorphan is used to treat crashes? Anyone know?
I heard him say to use it prior to the activity not after a crash.
Yup even exciting music triggers it.
I have PEM or worsening of symptoms after exertion post Covid. It is very difficult to know what will put me into PEM at times. This makes avoiding PEM difficult. Do you suggest complete rest would be best for recovery?
In my experience, complete rest can lead to deconditioning. Pacing to meet your personal needs is your best bet.
@@bonniegeiger2882 thank you
I don't feel episodes of PEM are cumulative. If going all out, for sure, recovery will be extended (which is why graded exercise is a joke), but I feel like over time, I go back to baseline.
i thought I heard someone say: over time it should slowly improve as long as you keep away from crashing which will cause a setback.
As someone who's in bed most of the day... Please don't gamble on this. You have a lot to lose.
PEM: 20.8.2019-15.6.2021.
are you saying you cured PEM and don't have it anymore ? I dont understand you.
@@myotherusername9224 Yes, also POTS resolved on 20.10.2022.
So I consider myself healed.
It's kinda crazy have life back...
But I have to color it now I lost all the joy but soon I will take care of this too...
I think it's all abot to calm down inner "sensors". Or maybe I regulated deregulated nerveus system back.
From 8.5.2019-20.10.2022
@@mihakavcic7237 TELL US please what treatment cured you
@@myotherusername9224 I will copy one of my Facebook post...
1.Craniosacral therapy.
2.Was lucky to be diagnosed in two months.
3. Had the mental capacity to go through this.
4. At the finale stage reflex therapy and chiropractor.
5. Suplements, but I don't know there were so many...
From 20%-100%
Time 8.5.2019-20.10.2022.
Comlitly fine.
From 8.5.2019 to 15.6.2021 was unbearable.
15.6.2021 [Last whipe-out PEM]
And thanks god that the POTS is gone.
POTS was with me to the end.
A loyal friend who watch after me, to the end. 😊 But it was really mild at the end. 11.3.2022-20.10.2022
I think its all about the head sensors.
Emergcy shot down happens... And there is no swich on or off [depend how you wonna look it] for this highly alert senosrs.
You just have to calm it all down day by day but is easy for me to say now when evertying is working.
Sleep ok
Memory ok
Cognition ok.
Standing ok
Walking ok
Running ok
Concentration ok
Sound, ligh sensitivity "normal"
Sore throat signals, no more.
Energy distribution trough the day normal
Being tired at the end of the day normal.
Perception of time, back to normal.
Get all my friends back but they are still guilty of betrayed. " We didn't know We didn't know, people just can get it. And why should they, they have their own lifes and problems every day.
With Love, Mike
And advice... The state you are in is making you stay this way and you can't do anything about it. [Or maybe you can 😉]
So try to get the hole picture with this limited cognition of your's and probably mixed with some despair, and address all the aspects of life for the better and probably somthing will change for the good and than you are on a healing path and evertying ia already ok. 💖 But will probaly take time... 🥴
@@mihakavcic7237 what do you think helped you with PEM? We’re you resting a lot?
my PEM is immediate
does it come up as soon as you exert yourself? is it worse the next day or two days later ?
Take high dose vit d3 40k per day
I don't think that would work. I take 10-15k.
Evidence based 🤣
whats so funny