#PEM management

[compassionmattersmost]

Calling All Beings to Send Love and Peace: A Message for Our Community

Harnessing Inner Peace: A Pacing Toolkit Tool for Those Living with ME/CFS or Long Covid As we face the approach of Hurricane Milton, we are reminded of the moment when Jesus calmed the storm on the Sea of Galilee. His disciples, filled with fear, watched as He spoke these simple yet powerful words: “Peace! Be still!” And the storm settled. This is such a time for us to look at the storm that’s…

[crazycatsiren]

Yet another one of those days when I can't concentrate on anything because the brain fog is fogging. Maybe I should just take my painkillers and go to bed.

[tele-mesmerism]

when i got my diagnoses the cfs dx felt so secondary and less of a big deal than fibro but i wish theyd put emphasis on how much you can destroy your body permanently. but ofc they wouldnt have said that bc they were still teaching GET at the time, they were recommending treatment that wouldve damaged my body so much

[phonesuitedirect]

Property Experience Management Systems (PEMS) streamline operations, personalize guest experiences, and ultimately cultivate exceptional stays. In this article, we will explore the impact and benefits of PEMS in transforming the hospitality landscape. Read More...

[c0rpsedemon]

I LOVE YOU

[dagasinfilo]

god i need to get this bitch diagnosed

[emmasammuel12]

IBM Partner Engagement Manager | Pragma Edge

Pragma Edge has significant experience with helping customers design and configures optimized onboarding business processes into Partner Engagement Manager. To speed Partner Engagement Manager deployment projects’ time to market, Pragma Edge is the only IBM Partner offering “Deployment Accelerators�� that deliver standard onboarding workflows for IBM Sterling B2B Integrator and IBM Sterling File Gateway out-of-the-box.

Partner information collection and storage is done using duplicate and disparate systems and processes. No defined workflow process for consistent customer onboarding.

Importance of having the PEM 

Flexible Deployment Options

Accelerate Time To Revenue

Optimize Partner Onboarding Processes.

About Pragma Edge INC.

Pragma Edge is a software, SaaS, and consulting services company that drives digitization data integration and process automation. We are one of the fastest-growing companies in the United States and are ranked 20th among I.T. Services companies. We are achieving this growth by helping our customers to achieve their goals, delivering innovation, collaboration, and agility with solutions and services that improve their bottom line and business operations. We are a team of "Does and Thinkers" who take a pragmatic approach to addressing the needs of our customers.

[cripplecharacters]

Hi there! I'm working on a modern supernatural story, and I've got a side character (the main character's best friend) who deals with chronic fatigue syndrome. He's a sweet, goofy, confident guy, and he has friends who are happy to change plans to accommodate him when he has flare-ups. They'll also help him out with chores or errands when he needs, with his consent. Naturally he gets bummed about his condition from time to time, but he's accepted that it's how he lives and with the help of therapy he's found ways to manage it. He also has plenty of hobbies and interests and grievances outside of his condition.

My question is this: I have a side-plot where the characters learn that a vampire has been feeding off him for weeks without his knowing, most likely using some kind of hypnotism. I'm wondering if the effects of consistent blood loss - fatigue, headaches, dizziness, etc - could reasonably be chalked up to a particularly bad CFS flare-up. Or would that be something where it's more likely he would notice the difference in severity of his symptoms and realize something else was wrong? Assuming the vampire can heal up any bite marks he leaves.

For the sake of clarity, he's had CFS most of his life and I'm taking care to avoid implying that it has anything to do with the vampire attacks. I'm just wondering if his symptoms would help hide the feedings or not.

Thank you!

The short answer: absolutely yes, this seems like it could be chalked up to a bad flare-up.

The long answer: I'm going to use the CDC's description of CFS/ME to lay out pretty exactly why it would work for both you and anyone wondering why exactly it would work.

A list of symptoms from the CDC has 3 core and 2 that you only need 1 out of 2 symptoms to have CFS.

Core: Lowered ability to do usual activities due to fatigue [that is not relieved by sleep/rest] that wouldn't have been an issue before illness

Core: Post-exertional malaise (PEM), which is a worsening of symptoms after physical or mental activity that wouldn't have been an issue before illness. Often described as a 'crash' and can include feeling dizzy, having difficulty thinking, headaches, or feeling ill. It can take days, months, or longer to recover from a crash and it's hard to predict how long a crash will last or what will cause it.

Core: Sleeping problesms; even a full night's sleep doesn't help symptoms much and might not help at all. Might have trouble falling or staying asleep.

Other: Problems with thinking and memory, like 'brain fog' or slowed thinking or trouble remembering things or paying attention.

Other: Orthostatic intolerance, meaning that symptoms can get worse while standing up. This can make people feel lightheaded, dizzy, weak or even faint.

I've bolded the symptoms on the list that match your stated symptoms of vampiric blood loss: "fatigue, headaches, dizziness, etc." and as you can see they match up pretty exactly!

Your character could perhaps do something that required a decent amount of mental or physical extertion, and perhaps it did or didn't cause a crash but at around the same time the vampire could have started to feed off of him. This might seem to prolong the 'crash' and your character might not think twice about it, just realize that they're feeling pretty miserable in a way not unknown to them.

I hope this helped!

PS, I really enjoy modern supernatural stories, and if you ever feel like sharing it I'd love to read this.

— Mod Sparrow

[myalgicencephalomyelitiscfstom]

From The #MEAction Network

Wondering about the terms PEM or pacing? Have you seen #StopRestPace and were curious as to what it referenced? Maybe you have been in our community a long time and want to save some easy ways to explain these concepts to others. Perhaps you have seen pacing misused and want to help clear that up. We hope this post helps!

#StopRestPace is a campaign created by #MEAction to help our community spread the word to those who were experiencing PEM after COVID-19 to rest and pace their activity.

What is PEM? Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.

Sometimes exertion is misunderstood as exercise. Exercise is simply one form of exertion. Exertion is defined here as anything that stresses or strains the system. Exertion can be physical, orthostatic, sensory, cognitive, emotional, or environmental. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.

Pacing is a self-management strategy for activity. Patients who pace well are active when able and rest when tired. Proper pacing involves building up awareness of the levels of daily activity that do not trigger relapse of symptoms through PEM. While this sounds simple, it is incredibly difficult. Activity management in severe patients can be very challenging since even activities like eating or brushing teeth may lead to a crash. Pacing advice may not always be useful in this population.

#MEAction offers three pacing guides - adult, pediatric, and clinician - on our site. Our pediatric guide was developed in conjunction with Long Covid families. Our clinician's guide was developed with Patient-Led Research. https://www.meaction.net/resource/pacing-and-management-guide

[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.

[m-e-and-more]

Not all #LongCovid is #myalgicEncephalomyelitis.

While its super important to raise awareness of the simularities of the #millionsMissing with #MECFS and #millionsMore with #LongC it is also essential to recognize that only a subset of #covid #longhaulers meet the criteria for a diagnosis of ME.

ME aka #ChronicFatigueSydnrome is not the same as #chronicFatigue. The defining symptom of ME / #CFS is #PostExertionalMalaise or an exhasurabtion of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.

When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.

When you are talking about long covid patients be clear that only the subset with PEM have MECFS.

It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA approved treatments for ME, many commorbidities do have effective medication options. Management of ME must also be tailored based on a patients commorbidities.

Patients with MECFS and post viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.

Long covid patients who experience PEM should be advised to #StopRestPace and informed about the importance of pacing agressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)

Because long covid is a broad category that encompasses patients MECFS #MCAS #fibromyalgia #POTS #dysautonomia #autoimmune and #autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.

MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that #covidLonghaulers will #LearnFromME and ally with us to end #postViralIlness

[compassionmattersmost]

Coping with ME/CFS in the Aftermath of Hurricane Helene: On-the-Spot Practices for Pacing and Recovery

Rest now, breath by breath,Let each moment cradle you—And nourish your soul. As we recover from the aftermath of Hurricane Helene here in Florida, many of us are left not only dealing with physical damage and power outages but also with the internal toll such intense stress can take. For those of us living with chronic fatigue syndrome (ME/CFS), the impact can be particularly difficult, as our…

[chronically-persistent]

ME/CFS AWARENESS MONTH

Hello and happy May! As of today, it's officially ME/CFS Awareness Month, so I have compiled some resources to spread in the hopes of informing and bringing attention to this disease.

What is ME/CFS?

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex and debilitating systemic disease that varies in severity and presentation between patients. Some common symptoms are fatigue, sleep problems, widespread pain, difficulties in thinking and memory, and PEM. PEM (post-exertional malaise) is a hallmark of this illness, defined as a worsening of symptoms after mental, physical or emotional exertion that can last from days to even weeks.

Some other symptoms include: gastrointestinal problems, dizziness, difficulty concentrating, changes in mood, headaches, sore throat, skin rashes, musculoskeletal pain and heart palpitations. Science is still unsure how ME/CFS affects the body, but in many patients it appears after an infection with a virus.

There are no tests for ME/CFS as of May 2024, and the only method of diagnosis is a process of exclusion. As such, ME/CFS is critically underdiagnosed and many suffer without knowing. People with this disease are often recipients of medical gas lighting and negligence, with the average diagnosis taking around 1-5 years.

There is no cure, and there are limited treatments, most aiming to address individuals symptoms or comorbidities. Despite the misinformation still spread around, exercise is not a recommended treatment and can cause great harm to ME/CFS patients.

How Can You Help?

There are many organizations working toward awareness and quality of life for ME/CFS patients, and I'll list some of them below. This is not an exhaustive list, but be aware that there are many web sites that spread misinformation and harmful statements: any that talk about a cure or exercise therapy are generally ones to avoid.

If you can, please take a look at the information the listed sites provide and share their knowledge in whatever ways possible. I'll also include some resources for ME/CFS patients, and I encourage allies to look as well.

I hope you have a wonderful May, and to all fellow ME/CFS sufferers, know that you are not alone. We can do this.

(Also, please let me know if there are other sites you recommend, or if there are any personal experiences you would like to share. Treat this as an open invitation to share your stories if you are comfortable.)

Links;

[flutterbyfairy]

i've been collecting resources and studies about myalgic encephalomyelitis for upcoming doctors appointments, and since there's a lot of misinformation about ME out there i thought i'd make a post with links and information that might be helpful for other ME patients, or just generally educational!

for anyone who doesn't know, myalgic encephalomyelitis is a debilitating multi system chronic illness. it's most characteristic symptom is post exertional malaise/symptom exacerbation (meaning symptoms getting significantly worse after exertion with prolonged recovery periods - see the diagnostic criteria linked below for more explanation). it has previously been called chronic fatigue syndrome, a name associated with claims of it being a psychosomatic condition rather than a medical one despite evidence to the contrary (here's a page with some information about the history of ME, and see the pathology section further down for evidence of ME being a physical disease). ME is also often comorbid with conditions like POTS (or other forms of orthostatic intolerance and dysautonomia), MCAS, and Small Fibre Neuropathy, and it's not uncommon for people who have long covid to develop ME. but yea! here's some links to resources i've gathered.

general resources/overviews:

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer For Clinical Practitioners 2014 Edition

Diagnosis and Management of Myalgic Encephalomyelitis - ME Action

Initiating Care of a Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Medical considerations when treating urgently ill patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Three Cases of Severe ME/CFS in Adults

diagnostics:

Myalgic Encephalomyelitis: International Consensus Criteria <- just the criteria

Myalgic encephalomyelitis: International Consensus Criteria <- criteria with explanation of how and why it was developed

TESTING RECOMMENDATIONS FOR SUSPECTED ME/CFS US ME/CFS Clinician Coalition

there are multiple ME severity scales, and exact definitions of what constitutes mild/moderate/severe/very severe vary a bit, but here is one: M.E. Disability Scale, another one is the ME/CFS Disability Rating Scale from ME Association, however the pdf on their website costs so i also have a pdf that i made with the text

pathology:

Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients

Decreased oxygen extraction during cardiopulmonary exercise test in patients with chronic fatigue syndrome

Developing a blood cell-based diagnostic test for myalgic encephalomyelitis/chronic fatigue syndrome using peripheral blood mononuclear cells

Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Mitochondrial complex activity in permeabilised cells of chronic fatigue syndrome patients using two cell types

Muscle sodium content in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Redox imbalance links COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome

The use of oxygen as a possible screening biomarker for the diagnosis of chronic fatigue

Tissue specific signature of HHV-6 infection in ME/CFS

treatment (both helpful and harmful):

ME/CFS TREATMENT RECOMMENDATIONS US ME/CFS Clinician Coalition

Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/ CFS)

Potential Therapeutic Benefit of Low Dose Naltrexone in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Role of Transient Receptor Potential Melastatin 3 Ion Channels in Pathophysiology and Treatment

Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Evidence Against Exercise for people with PEM/PESE in Long COVID and ME/CFS

PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the methodology and results

Treatment harms to patients with ME/CFS

[thecouncilofidiots]

Our day has been completely derailed and I don't know how to handle that

We're not DONE with what we need to do, we were just trying to take a break but now but now we are no longer okay

And of course, because we can't finish our self-assigned tasks, the brain is fucking SCREAMING at us to finish cleaning we have to finish cleaning we had a manageable list of plans! We were going to do a reasonable amount then stop, which is hard to do! But now but now we can't and that makes everything Bad and Wrong and Not Good

We can add the rest of today's plans to tomorrow, but that makes tomorrow's plans less manageable and that means breakdown! If we can't do it! We're supposed to do smaller amounts that the body can handle over a longer time to not induce a PEM! Or an obsessive-compulsive episode induced panic attack!

Edit : Yes this is related to the PSA about properly tagging triggering content post, because fun fact! Being negatively triggered can derail your whole day!

[transfaguette]

hey i remember you mentioning you have chronic fatigue a while ago. if you dont mind me asking, how did you figure that out? did a doctor help you navigate your symptoms and arrive to that conclusion or did you figure it out yourself and. how. i considered it as a possible explanation for my symptoms years ago but after a while of not being heard/believed i just kinda started ignoring it since ive been basically programmed to keep functioning 'as normal' since childhood even with no spoons (disabled from 4 years old with some kind of arthritis/similar and a mother obsessed with making me not look disabled). but a recent chain of events and its consequences on my health left me wondering. and now im wondering how to even go about it

i think first we have to make a distinction between chronic fatigue (a symptom) and chronic fatigue syndrome (a disease). As a symptom it can have many, many causes and many many solutions. The specific hallmark of CFS is post exertional malaise, a symptom where activity and exertion worsens your symptoms, sometimes for days, weeks, or even months or years. PEM can also come with a sore throat and swollen lymph nodes, among other things. That is kinda how you figure out you have CFS. This exertion doesn’t have to be strictly physical, either. mental and emotional exertion can trigger PEM as well. You should also rule out other diseases, too, because like I said chronic fatigue as a symptom can have many causes, and some of them are much more treatable than CFS. But if you’ve been chronically ill you’re probably used to tests always coming back normal.

I figured this all out by myself. CFS is like fibromyalgia in terms of how the medical community treats it but with even less support and approved treatment I think. It has been a known complication of long-covid (and other viral infections like mono), though and so has been speeding up in research and advocacy progress the last few years. Basically the only treatment is whats known as pacing, or carefully managing your activity level as to not trigger PEM. After 2 years I’m still trying to adjust to this. It’s hard. But some people do reach pre-illness levels of function with careful pacing so it is very much worth doing.

i recommend checking out the FAQ on the CFS reddit, theres a wealth of knowledge there.

Good luck, and I hope you find some healing in your future.