#post exertional malaise (PEM)

[myalgicencephalomyelitiscfstom]

From Medscape (widely read by health professionals)

Post-Exertional Malaise in Fatiguing Diseases: What to Know to Avoid Harmful Exercise

May require free registration

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“There are several lines of evidence for abnormal responses to exercise in people with PEM, Davenport said. These include muscle worsening, cardiac preload failure & impaired systemic oxygen extraction, metabolic dysregulation, & abnormal immunologic & neurologic changes”

[crippleprophet]

let me open by saying I Know How This Sounds (fem whose undergraduate chemistry professor recommended ze take turmeric to cure zyr arthritis, etc) so no hard feelings if you keep scrolling, but hopefully folks who know me know i'm speaking honestly about my experiences, even if those don't end up being the same for other people. so!

2 Tbsp of a common kitchen spice is doing as much or more to manage my ME/CFS as any of my meds or self-medicating drugs

@lakeeffectbitch outlines a way of trying this with a control in their reddit post (link); i just went directly to the one they thought might work so i'll put my experiences & the science/theory behind this under a cut for folks who want to avoid potential placebo effect :)

i'll get more specific about this in the "spoilers" but please be aware, especially folks with diabetes or other blood sugar conditions, that this substance may cause a blood sugar drop. it's less likely at this dose but probably keep a sugary snack on hand just in case

if you experience post-exertional malaise & want to try this but don't have spare money to spend on spices feel free to dm me & i'll see if i can help!

my experience:

i took 2 Tbsp ground sumac mixed with warm water on February 11. i tried taking it with a straw first because that's what my colonoscopy prep had said would make that go down easier but because the sumac particles were so big they didn't want to remain suspended & trying to get them in the straw was difficult, which then made it harder to swallow without, yknow, noticing that you're slurping down sediment

what worked better was getting the powder wet, putting a big clump of it on my tongue, then swallowing it with water like a pill

within about half an hour of taking the sumac it was like my fatigue just faded around me where i stood. it dissolved to the background & when i thought "oh i want to do this" or "i should do that" suddenly i found myself just doing it. i had spent the past week at least bedridden except for the bathroom, & though i took the sumac on a better day, i'd been planning to return to bed with a snack after taking it.

instead, i made myself lunch, and i sat on the couch to eat it. all of this was without taking an edible that day; usually i've gotta take at least 25mg delta 8 + 25mg cbd to even consider sitting on the couch. also, it was storming.

from my write-up the day of: "everything felt very sharp & clear & lucid." i washed the dishes from my lunch. all of these activities were about 2 hours, & at that point i emphatically needed a nap. waking up felt like after taking a muscle relaxer & sleeping: my muscles were more relaxed, & my whole body felt like it'd gotten a bit of a break

i've taken sumac at least 8 times since then on at least 5 different days (this time by modifying this sumac tart recipe to include a lot of sumac powder in the crust, which has been much more enjoyable than the Glass O' Sediment lmao) & adjusting for factors like weather, the effect has been comparable every time:

i watched Inception on the couch with my husband, & understood when she explained things to me

i watched leverage on the couch all day when it was below freezing

i worked a bit on fanfics i've barely been able to touch in a year

i "meal prepped" measuring spices, gathering ingredients, & soaking beans to make beans & rice in the instant pot later that day. i literally can't remember the last time i was able to use my instant pot, after thinking about it i think it was when i made palak paneer last summer, but that was a one-off special occasion thing, i've used it maybe 3 other times since developing ME

i wrote this post

the science:

okay a lot of this shit was over my head before i developed ME so i'm gonna be summarizing at my level lol, look to @lakeeffectbitch for a higher-level analysis

but what i do know! (all images from "The malic acid inhibiting inflammation in ankylosing spondylitis by interfering M1 macrophage polarization" by Ji et al., January 2025)

sumac contains high levels of malic acid, which is found in certain fruits (apples, peaches, etc)

the drugs.com page classifies malic acid as an inactive ingredient, so there are no known drug interactions

mice with ankylosing spondylitis had lower levels of peripheral malic acid than control mice

ID: bar graph showing mice with AS had about 0.03 micromoles per milliliter of peripheral malic acid, compared to the control mice level of over 0.2 micromoles per milliliter. the difference is labeled significant via asterisks. end ID

mice with higher malic acid concentrations had lower ESR and CRP (inflammation markers)

ID: two graphs showing lines with a downward slope. the top graph, ESR versus malic acid concentration, is labeled: r=-0.6802, 95% confidence interval =-0.8843 – -0.2578, p=-0.0053. the graph shows ESR, an inflammation marker, decreasing as malic acid concentration increases. the bottom graph, CRP versus malic acid concentration, is labeled: r=-0.6068, 95% confidence interval =-0.8537 – -0.1371, p=-0.0165. the graph shows CRP, an inflammation marker, decreasing as malic acid concentration increases. end ID

mice treated with malic acid had lower levels of TNF-alpha than the mice with untreated ankylosing spondylitis. humira & similar biologics that treat autoimmune diseases are TNF-alpha blockers

ID: a bar graph of relative mRNA expression of TNF-alpha. M0, the control mice, has a relative expression of 1. M1, the mice with ankylosing spondylitis that did not receive treatment, has a relative expression of slightly less than 4.5. M1+MA, the mice with ankylosing spondylitis who received the malic acid treatment, has a relative expression slightly less than 3. this indicates that the mice treated with malic acid had lower expression of TNF-alpha than the untreated mice. asterisks between M0 and M1 and between M1 and M1+MA indicate significance. end ID

the mitochondrial function of M2 macrophages in mice treated with malic acid "was significantly enhanced"

analysis of the mice's spinal tissue blew my fucking socks off. trying not to jump to conclusions & i know journal articles are full of errors but that looks potentially disease-modifying.

ID: a 5x3 presentation of samples of mouse spinal tissue. the control mice, which are healthy, have thick, undamaged, glowing tissue. the mice with ankylosing spondylitis have thin, curved, cracked-looking tissue. the mice treated with celecoxib, a common prescription NSAID for arthritis, appear very similar to the untreated mice. the mice treated with 250mg/kg of malic acid per day have tissue in between the untreated and healthy appearances; the tissue is "glowing" like the healthy tissue but still narrower and curved, although less so than the untreated tissue. the mice treated with 500mg/kg of malic acid per day have tissue which looks even closer to the healthy appearance, with less curvature than the other treatment groups. end ID

since i started drafting this post i've started taking these malic acid supplements from Nature's Life – the full dose made me feel weird including some heartburn so i cut the capsules & take roughly 2/3 – 3/4 of it at a time (i drop the rest into a spare pill jar to make more doses from). it's been similarly effective for me

please be aware that the supplement instructions say to only take it once a day, i haven't had any issues but everybody is different & this avenue is definitely under-researched! (the mice were given 250mg/kg per day which for me would be like 27 grams but i am not a mouse lol)

[cosmiccripple]

good morning, tis i, the evil overdoer, and my disloyal horrible companion, my body

[thingsiwannareblog]

Having chronic illness is such bullshit. Today I am exhausted, aching, and having chills because I overdid it yesterday.

You know what I did yesterday that was so over ambitious?

I thought really hard about how knitting works.

Yup. I knit a few rows, crocheted a few rows, and mentally - MENTALLY - sketched out the path that the yarn takes in each method and thought deeply in 3D about the topology of each method and how they’re different and similar.

And apparently that was too much, because I’m having a flare up and PEM today. FML.

[pandemic-info]

Why You Should Rest If You Have COVID-19 | Time

[moonpool-system]

us: we cant possibly have ME/CFS, it's not something we can just self diagnose, we don't know physical illness as well as mental stuff, it could be any cause really, it doesn't matter that the vitamin D we got isn't working

us: we've just been burnt out for *checks watch* seven years. I'm sure it'll clear up soon. time to spend all day shopping

Post-Exertional Malaise: lol *hits us like a bus*

us:

us: ..................... Wow that burnout is really firing back huh--

[unfilteredrealities]

Pacing Tactics

● Prioritize your activities and delay, delegate or eliminate non-essential items.

● Minimize sustained physical or cognitive exertion by dividing and spreading out your activities into small segments with planned rest periods in between. For moderate to severely ill patients, even normal activities of daily living (eating, bathing, dressing) should be modified to avoid triggering PEM.

● Immediately stop and rest if you start to feel dizzy or short-of-breath, notice your heart rate increasing, or sense other PEM warning signs that might be unique to you. Don’t try to “push through” when you feel sick or tired. Although the concept is lauded in today’s society, doing so with ME/CFS will only exacerbate your symptoms and potentially worsen your illness.

● Schedule rest time (even if you don’t think you need it) to relax your body and allow for potential healing. When anticipating the need for extra energy (e.g. trip to the doctor, night out with friends, special occasion), plan extended rest time before and after the event.

● Learn to recognize emotional PEM triggers and take steps to avoid or minimize their impact. If a stressful situation is primarily beyond your control (e.g. the actions of others, world events, lack of understanding about this disease) try to take the emotion out of your thought process. Worrying or holding on to anger when you can’t do anything about a situation rarely accomplishes anything for anyone, but if you’re living with ME/CFS, it can use up your energy and cause you harm.

● Difficult as it may be, avoid the temptation to do too much when you’re feeling a bit better. It is rarely worth the consequences when living with ME/CFS.

[willowreader]

I know someone with PEM. They got sick with Covid before vaccinations were available.

This is what this

PhD Dr. says @chydorina (on Twitter X)

This is THE 'to-read' paper if you want to understand the physiological basis behind PEM from activity (Scheibenbogen is one of the authors).

PEM (post-exertional malaise) is a confusing concept for patients but it is not a black box. We do know a lot about what is going on and we definitely know enough to say this this process should not be triggered and this needs to be a priority.

The summary

ACTIVITY LEADS TO:

1. The accumulation of lactate, ROS, and the deprivation of cellular energy sources.

This occurs every time we hit 'go' and perform an activity. If we dont have the juice to complete this activity safely - we get into a cycle where metabolic demand continues to increase and exercise capacity keeps declining. If we keep going and going this cycle get worse and ROS starts damaging the mitochondria.

Practically this means that all future activities would take WAY more energy than they would previously if done at a pre-PEM baseline. The activity at the beginning would use normalish amounts of energy and produce normalish amounts of lactate/ROS etc. just as long as kept under the threshold but further activities would use WAY MORE ENERGY and produce MORE ROS and lactate than they should.

2. The DELAYED EFFECTS which include symptoms getting worse are due to triggering "immunometabolic downstream effects".

This means that the above changes have far reaching consequences on OTHER SYSTEMS FUNCTIONS. Those damaged mitochondria start to effect other basic functions like our immune function and our metabolic function.

3. In a final nail in the coffin the "immunometabolic dysfunction" then triggers problems with ionic imbalance (electrolytes) and triggers more muscle activation, mitochondrial damage, and immune responses.

4. Exceeding already reduced activity capacities enters affected patients into a recurrent and self-propagating loop.

Saying we dont understand PEM and that it is a black box is wrong. We understand a lot. We dont need more information to know that this process should NOT be triggered.

Please read paper.

Towards an understanding of physical activity-induced post-exertional malaise: Insights into microvascular alterations and immunometabolic interactions in post-COVID condition and myalgic encephalomyelitis/chronic fatigue syndrome (2024)

link.springer.com/article/10.100…

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom Do lovely, fun, productive things with your day but if you have a chronic illness and/or disability that can lead to post-exertional malaise then please don't push yourself too hard. Take breaks, pace yourself, give yourself extra rewards from me. emojis: black heart, blue heart, masked, lollipop x 5 2:01 PM · Nov 21, 2023

[chronicallyuniconic]

Post Exertional Malaise (PEM) - What is it?

describes the worsening of your symptoms after minor physical and/or minor mental exertion.

can occur within 48 hours of activity, leaving you worse for days, weeks, months or even years.

What it DOES NOT describe is that the minor physical or minor mental exertion can come from*:

- sitting up or rolling over in bed

- a coughing fit

- DIY noise

- the TV being too loud

- using the bathroom

- getting too cold or too warm

- too much light in the room

- a phone call or text conversation

- a hot shower or bath

- the noise of a hairdryer, of dishes being put away, the vacuum

*this is not a complete list by any means, it's all I can manage

For me, PEM has been one of the hardest to accept, knowing that the smallest of things will make my symptoms worse.

I genuinely used to think it was something people were wrongly trying to pinpoint because we usually have no other reasons & crave reasoning, so "it can't be from doing ONLY that," right?? Wrong.

I'm already having these symptoms, but now I'm going to suffer more with the symptoms because of some hollow event like brushing my damn teeth??

It's hard to accept because these things did not affect me this way before, but now, I cannot bear them.

Being in a state of PEM is to be in a state of pure suffering. You feel like you're dying but you're not, you're waiting for it to stop.

PEM makes me extremely depressed & all I want to do is be alone. In fact I HAVE to be alone, because everything is too overstimulating & makes it last longer.

It makes me extremely irritable, when I have to strain my way through the day, forcing my head to stay up with my hands, when all I may have done is fold some washing.

Stretching and straining my eyes open like I have been awake for 3 weeks. Trying to stand up but it's like someone in front of you forcing you back down with their body weight, every single time.

I get unbelievably apathetic towards PEM, because "this is who I am now" & I DESPISE IT.

Being ill, PLUS being in a state of PEM is living torture. It's the antithesis of everything I aspired to be. It is NOT ME.

[myalgicencephalomyelitiscfstom]

PEM = Post-exertional malaise

[evilwriter37]

I hate how inconsistent chronic fatigue syndrome is. I could have a day out (with my electric scooter, mind you) and not feel bad the next day.

Or I could take a shower and wake up the next day feeling like I over exerted myself and did a strenuous workout, so now I’m left with pain everywhere.

Or it could be the other way around. I almost never know what’s going to trigger PEM anymore, because it’s so inconsistent and seemingly random.

[cosmiccripple]

me when i've been severely overworking myself (doing less than my classmate's days) for weeks and now i have two music gigs i'm performing in all within three days of eachother and two appointments within four days of eachother (one of which is a hospital admission) and i'm now in a prolonged crash with a severe migraine: [insert surprised pikachu face]

i would love to say i wasn't expecting this but i 100% was. not messaged anyone all day and i have a full day tomorrow incl. physical, cognitive, orthostatic, emotional, and social exertion

i'm fucked and it's my own bloody fault. :/

[helenwhiteart-blog]

When chronic fatigue meets an ADHD brain

In this still fairly new phase of managing my energy levels (now much more volatile, since covid, than they have ever been) I am learning that cognitive fatigue can be just as destabilising as physical fatigue, with strong similarities plus some unique qualities between the two things that make it even more dangerous territory for someone with an ADHD brain. What I am seeing in myself is that…

[toomanyacronyms]

Possible PEM

I don't have a diagnosis, but I have been told by a handful of people that this sounds like PEM.

I notice it most after I get home from college classes or work. But I usually start flagging halfway through my classes/shifts. Headaches, trouble concentrating, just wanting to go lay down, brain fog, and a few others. Then I get home and immediately just feel like I got hit by a truck. Sometimes it's held off for maybe another hour, but without fail, I will feel extremely tired.

Since all I've heard about PEM is that it occurs days afterwards, I've assumed I don't have ME/CFS. But I'm wondering if my PEM is happening hours later, but to me, it feels immediate because the single event was me doing something as simple as getting ready to leave my house and/or driving to work or school. And sometimes the fatigue lets up enough for me to do things hours later, but I still need to be careful even then as it's easy to relapse and I still have the brain fog and muscle fatigue/weakness.

[unfilteredrealities]

Hey Google, why is my body punishing me when I just wanted to take a nice walk because it’s spring weather outside and the sun is shining bright and it’s warm? Why am I getting a strike by Zeus of chronically illness getting a zap and getting k.o with a big flare up? 😭💔