Post-Exertional Malaise: Clinical Management / Video 7 of 7

This video series is intended to review the clinical presentation, scientific underpinnings, and treatment approach for patients with post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE).
For an abbreviated version highlighting the clinical pearls, please watch videos 1, 2, and 7. Videos 3-6 offer a deeper dive into the scientific and evidence-based pathophysiology of PEM/PESE.
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Post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE) is an altered physiological state and pathognomonic finding unique to ME/CFS that is now being recognized in those with post-acute sequelae of COVID-19 (PASC), also known as Long COVID.
It is critical that healthcare professionals recognize PEM/PESE and support the patient in avoiding a push-crash-cycle which can exacerbate disease processes and contribute to worsened long-term functional prognoses.
In video seven of this seven-part series Brayden Yellman, MD, and Lucinda Bateman, MD, tie everything together, offering insights and guidance on clinical management of those who experience PEM/PESE.
It has been consistently observed that when patients finally break this cycle and avoid PEM for a more consistent period of time, their functional baseline and all aspects of their ME/CFS symptom control improve, independent of any other pharmacological or behavioral intervention.
Managing each and every pathological component of ME/CFS not only reduces the impact and suffering of those specific symptoms, but perhaps more importantly, can reduce the incidence, duration, and intensity of PEM and improve overall function and prognosis.
Video details:
- Pacing management/guidance
- Avoid the push/crash cycle ("stubbed toe analogy")
- Activity modification
- Trigger recognition/planning
- Budgeting rest breaks
- Low-dose naltrexone (LDN)
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.
This video was made possible by the OMF-funded Medical Education Resource Center (MERC) at BHC, our generous donors, and viewers like you.

[@WhiteRabbitAnne]

I find this so interesting it mirrors what we have found in post polio. Rest is best. For those who remember the polio era. Fighting through was considered the best way to re establish pathways. The concept was so ubiquitous that they even had the children's story about "the little engine that could" with the tag line "I think I can " Post polio patients were dumbfounded to hear that with their new symptoms they were to do the opposite of what they did as children. They were to rest because the nerve connections were fragile and repeated injury could return them to their original paralysis. Without hope of repair. Between Post polio and CFS, it really proves that doctors must understand the underlying metabolic process of any disease deeply before suggesting any therapy. So glad we are past the" you're imagining it" phase Never forget MS patients were originally put in insane asylums because they were thought to be malingering due to some psych problem. Nothing ever changes. Doctors don't have answers, the patient is malingering. The medical field really has to stop doing that. They are proven wrong everytime.

[@The_ME_Lion]

AMEN!! 100 percent!

[@wildgardens]

Fantastic series thank you!!

[@me-cfs-strategiesforhealing]

Agreed! May every doctor see this series!

[@ladyanne8139]

Great information... thank you. Fibromylagia and CFS.... ? I find I overdo. Pay the price..

[@traveltheworld1870]

Thank you for creating these videos. The short length of each video is especially helpful as it allows me to share them with my colleagues without taking up too much of their time. I am impressed by the clarity of the content, which is presented in a concise and easy-to-understand manner. Thank you again for your hard work and dedication in putting together such a helpful collection of videos!

[@JenniferJacksonxminecraftlifex]

Thank you.

[@Eggplantpermission]

I got this at 20 years old and I feel hopeless like my life is over.

[@The_ME_Lion]

I’ve had this for 24 years and nothing ever helped. Went from mild to severe. I am having improvements on the carnivore diet. Please look it up. It sounds insane, but it’s the only thing that has helped me at all. No longer confined to my bed and recliner.

[@natashannmarieeklove]

There’s many of us severe people that get 0 relief from LDN

[@tunderozsa7921]

Hi, I am just wondering about the PEM condition, and how it is possibly effecting me. I was diagnosed with ADHD and awaitinf for ASD ( I am 39). Lots of triggers which can lead to PEM, I already have as a basic background noise of my life. As the living itself cause higher amount of triggering symthoms, my PEM can be easily triggered with anything added to this. It would be interesting to see how ND conditions like ADHD and ASD affect PEM. Also, it would be good to know how to make a difference between sensory overload and PEM. Can those conditions interact with each other, causing a much harder life to me?

[@marskristin]

I greatly appreciate this work greatly, please- consider accessibility with plain language. (Not even the medical terms, but the sentence construction, length, etc., in general). Berkeley's guide on plain lang is pretty helpful. Thank you again!

[@natashannmarieeklove]

Please find the cure or successful treatment 🙏🏻🙏🏻

[@mihakavcic7237]

From tactic crash to tactic crash to normal health again. ~Mao~ With Love, Mike

[@user-nm1qn6cm8e]

Sorry. It doesn't work that way. Mao likely didn't have ME/CFS. Your advice is dangerous. It's like recommending fruits and vegetables (high potassium and phosphorus) to a kidney dialysis patient. Yeah, those things are healthy for the majority of the population but there is a subset that has a disease that works counter to that advice. That's the problem with us ever finding a cure for this disease. Too many people are not able to think outside of the box.

[@mihakavcic7237]

@@user-nm1qn6cm8e I agree with you dispaite the fect that I am cured. Different people, different approaches. For me it worked. Ttherapy that also helpd me were craniosacral therapy , reflexology, chiropractic. For me ME/CFS is not a disease , it's kinda squeezed body response and if you are lucky you can unsqueezed yourself. Open for further discussion. Been sick from 8.5.2019-15.11.2023 With love, Mike

[@afterthoughts423]

What a joke! 😡 "Fools error?" We aren't foolish for not always pacing. From 28 years of this, I'll tell you that you'll pace yourself right into deconditioning and stagnation which takes your activity threshold lower and lower while letting any muscle disappear, making you less functional than before. We can't go nap in a bubble our who lives! I'm a mom and the sole provider for my household who wouldn't be able to survive off pennies of disability in the US. I don't get to trickle through my work day, take a nap every 5 minutes, nor ignore the demands of a child and household. Y'alls advice is basically play dead. How about digging more into solving the root cause and not band-aiding the real issue! Very disappointed this is the best advice you have.. most people with this issue already try to self-pace as best they can. 🙄

[@CalvinRyerson]

Coming in hot! Whoa. Slow down. First of all, you heard wrong. She didn't say "fools error", she said "a fool's errand" which is a completely different meaning. To save you a trip to the dictionary, a fool's errand is a task or activity that has little to no hope of success. So that in NO WAY is calling you foolish. Good lord. While I catch my breath I'd like to say that I'm very sorry that you are unable to pace. Your life sounds very difficult and I hope that a cure is found. You have to understand that what you're asking for "digging more into solving the root cause" is EXACTLY what they spend their lives trying to do. All they do is research, run clinical trials, educate medical providers, and put out FREE content for everyone. Also, everyone is different. Do you think that your body is somehow the template for everyone else's? Yes, your body doesn't respond like others. Many are bed-bound and could only DREAM about working or providing for their families. There are so many variables and comorbidities to this disease that it is extremely difficult to make a cure all for everyone. I'll never understand the hostility towards the doctors and medical providers that ACTUALLY BELIEVE that this even exists and do nothing but try to find a cure! Don't you understand that putting content like this out there can potentially inspire others to get ideas and help out? All of this is to help you and everyone else that suffers with this. I'm a fierce defender of anyone who is trying to help, so if I come off a little strong, that is why.

[@afterthoughts423]

​@@CalvinRyerson It doesn't matter. A "Fool's ERRAND" is no better. They may as well say "Play Dead!" News flash, lying in bed or barely living life leads to a poor outcome too.. and usually sooner. If someone doesn't work they risk going broke and possibly homeless. If they don't do activity to challenge their muscle they'll get muscle wasting leading raising the risk for injury and weakness (making minimal activity even harder than before). If they don't exercise their mind you can get memory issues or depression that can lead to su*cide. Even bed-bound people need movement and activity. We can't just avoid life. People need to rise up and quit accepting the bare minimum from our healthcare system. We have some of the most costly healthcare in the world, yet it's sickening how terrible it is!! It functions by being reactionary and band-aiding symptoms instead of being proactive and digging deep into root cause. Most folks wait 6 mo.+ to see specialist who only chats with them about 5 minutes, and discards them saying "pace yourself," "it's in your head," or some other garbage. I find it amusing the doctors who follow this medical system jab us with several series and cocktails of vaccines from the time we are born into adulthood full of formaldehyde, fetal tissue, mercury, aluminum, etc. and then expect our bodies not to produce side effects or mutations. Our system keeps people sick to sell the Band-Aid.. not the cure. If this is the best information they have, they've obviously been failing to truly listen to real patient feedback and deeply understand. Most people don't have live in caretakers or the option to nap all day till they die. Sorry, not sorry... They sound out of touch. These doctors need to push harder. I don't know anyone with PEM/ PEMES/CFS that doesn't already realize they have limits, nor any of them that purposefully push past those limits more than necessary. You act like these doctors do this out of kindness, yet they and their company are making major money off these videos and at their jobs. In turn, patients deserve and have every right to speak out and push for better. It's sad you can get better advice than this from a FB support group from members without medical degrees than this particular doctor lead video series. I don't have hostility towards doctors, I have distain towards shallow, lacking, surface level advice. If doctors really cared so much they could help us by rallying together and pushing for holistic and functional medical doctors visits, body massage, needling, stretch clinics, home help, chiropractic, spinal decompression, deprivation float tanks, etc. to be universally covered by insurance. They'd also push for methods and advancements to be researched here that Europe has been ahead on for decades, yet the U.S. drags on. Instead they remain content and complacent in a broken system.

[@user-nm1qn6cm8e]

@@afterthoughts423 Many of us were made permanently worse by pushing through as you said. They've also done studies to show that ME worsening isn't caused by deconditioning. What about those who are athletes who get sick and are bedbound right away. They are not deconditioned if they were just very active before their illness. I understand your frustration. As someone with no income slowly going broke and no idea what I will do when that happens, I nonetheless, cannot push anymore. My body will just not let me so it's not even a choice now.