#post exertional malaise (PEM)

[pandemic-info]

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

[myalgicencephalomyelitiscfstom]

Useful 2-page document from Bateman Horne Center

"Pacing for PEM/PESE [post-exertional malaise/post-exertional symptom exacerbation]"

Links in image:

[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.

[thecouncilofidiots]

"Why are we so fucking exhausted? Other than shower, we didn't do much today..."

"...oh."

Explains the headache. And pain. And exhaustion.

On the plus side, we finally finished transferring all of our spreadsheet information onto SimplyPlural. Now, we just have to do the SimplyPlural and PluralKit profiles. (Which require making moodboards for everyone...)

-Sose

[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.

[jesusonafrickinboat]

May is ME/CFS Awareness Month!

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Chronic Fatigue (CF), a symptom of many chronic illnesses, is not the same as Chronic Fatigue Syndrome (CFS). There is a push for ME/CFS to be exclusively known as Myalgic Encephalomyelitis (ME) in the future

ME/CFS is a complex, fluctuating, chronic medical condition affecting multiple body systems and symptoms can change unpredictably

Post-exertional malaise (PEM) is the hallmark of ME/CFS

More on symptoms: Symptoms of ME/CFS

ME/CFS affects an estimated 836,000 to 2.5 million Americans, the majority of those diagnosed being AFAB

An estimated 90% of people with ME/CFS are undiagnosed

About 25% of people with ME/CFS are bedbound or housebound for long periods

Most of those diagnosed never regain their pre-disease level of functioning

The root cause of ME/CFS is unknown

Possible triggers include: viral infections (such as mono, the flu, or COVID-19), bacterial infections, physical or psychological stress, and immune system changes. There may also be a genetic component

There is no cure or approved treatment for ME/CFS

However, some symptoms can be treated. For example, PEM is treated by pacing. More on treatments: Treatment of ME/CFS

ME/CFS costs the US economy about $17 to $24 billion annually in medical bills and lost incomes

The ME Association and the CDC have more in-depth articles on ME/CFS for more information

[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.

[triumph-of-adaptation]

studiovinciguerra

Here’s a comic to celebrate the announcement made today that finally the clinical guidelines for Myalgic Encephalomyelitis so-called Chronic Fatigue Syndrome are finally going to be revised. The guidelines as they are now in Australia (which haven’t been updated in over two decades) recommend physical rehabilitation called Graded Exercise Therapy (or Incremental Physical Activity) which is based on Cognitive Behavioural Therapy so the position being upheld is that it’s all in the mind. The defining symptom of ME (and Long Covid) is if you do something beyond your capacity you will get worse, This is known as Post Exertional Malaise (PEM) or “crashing”. The quality of life for people with severe ME is atrocious - comparable to late stage AIDS or terminal cancer. ME is treated as some kind of late stage capitalism anxiety victim mindset tik tok social contagion and I’m sure that’s true to a very small extent, malingerers exist and so do lazy people. If someone you know thinks they have ME or Long Covid don’t be so quick to dismiss them. It is an invisible disability hidden in plain sight. I shan’t bother editing or proof reading this to give the maximum effect of hysterical ME ally that has been shaken to their very core by this astounding failure of da system.

[myalgicencephalomyelitiscfstom]

Ed Yong is an award-winning journalist who has been praised for his previous in-depth articles on long Covid

"Pacing is more challenging than it sounds. Practitioners can’t rely on fixed routines; instead, they must learn to gauge their fluctuating energy levels in real time, while becoming acutely aware of their PEM triggers.

...pacing isn’t a recovery tactic; it’s mostly a way of not getting worse, which makes its value harder to appreciate."

One person’s summary: “Ed Yong nailed it again, writing almost an entire article about PEM. He acknowledges all the major difficulties of living with it: The inability to do things you want, the inability to do activities to manage your mental health, that doing one small thing means you can't do something else later, the false accusations it's psychosomatic, and the lack of support people receive.”

[unfilteredrealities]

I turned 27 today! Whoop! 🙌🏻

But unfortunately my body is kinda oscillating between pretending to be healthy and borderline chronically ill today and it’s pretty bad 🥲🫣

I might have a crash or p.e.m idk but I feel so horrible physically wise 😩 It’s a mix between a headache, nausea, whole body ache, upset digestive system, itchy skin , restlessness, plain feeling like something is wrong, random pains, existing is so exhausting rn

Work wise was okayish I guess. My coworkers told me happy birthday and hugged me (might be as well that that upset my body as well but oh well can’t change it anymore rn) and I extra left earlier to work to get some snacks and drinkies for them :3

Dear people called and messaged me to tell me a happy birthday and I am grateful for every single person who thought about me today! ❤️ I feel loved.

[thecouncilofidiots]

Stupid PEM

Stupid ME/CFS

We were FINALLY having a good day mentally/emotionally

I was enthusiastic about food, got a decent amount of sleep, drank a full bottle of water, didn't feel inexplicably guilty for existing

So we cooked some food, did some dishes (made sure not to overdo it too! I didn't do all of them, I was careful to pace it out so I wouldn't trigger a meltdown!), and showered!

Enjoyed some stupid horror-comedy movies, had some of my favorite snacks

Overall a good and productive day!

And you know how I get rewarded for that?

Fucking PAIN and EXHAUSTION

Our fingers, triceps, head, hips, knees, ankles, spine? HURT

Hurts so bad we can't move and I feel sick/want to cry (/literal)

We honestly didn't even overdo it either, I've done so before, I'm learning our limits!

But we hurt so bad because we have Fucked Up Body Disorder -Ace

[multifariousmayhem]

source: http://www.cfsselfhelp.org/

we made this for our room but maybe it can help some people! so here you go

[helenwhiteart-blog]

Slowly inching back outside after a crash

I’ve done really well at starting to pull myself out of a pretty deep two-ish month long ME/CFS crash, not that I’m completely out of it by a long chalk but I want to be able to take pause to appreciate where I have got to considering how long and deep a crash can be (and the many months of overexertion that had lead up to this one, risking that it might take just as long to get out of). Also, a…

[pandemic-info]

I know unsolicited medical advice is never welcome, but I feel an absolute compulsion to mention #LongCovid & post exertional malaise to everyone I see posting about how they “just don’t feel like themselves/are weirdly irritable/can’t focus/can’t sleep/energy levels tanked.”

The first place most people jump to is “I’m probably depressed & I should push myself to exercise & get out more,” which would be fine if you’re actually depressed but disastrous if you have post exertional malaise.

I’m so desperate to spare even *one* person the agony of spiraling into #MECFS that I’m fine w/ being the unsolicited advice asshole.

Also, I’d bet my soul that #LongCovid is orders of magnitude more common than most people think because of the many people I know who almost certainly have it, only a handful have been willing to make even a tenuous connection between their post infection health issues & Covid.