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What is Post-Exertional Malaise?

New to ME/Chronic Fatigue Syndrome? MEAction's* wiki page on PEM gives a good run-down of the basics (with citations!) and then goes in-depth to cover everything you probably ever wanted to know on the topic. Here's a sample to kick things off...

"In ME/CFS, Post-exertional malaise (PEM) refers to a worsening of the illness after physical or cognitive exertion which was previously tolerated. This can include a worsening of ME/CFS symptoms, the appearance of new symptoms, and a worsening of “baseline” (capacity for exertion). These characteristics are often delayed 24-72 hours or more after the triggering event.

...While in most fatiguing diseases patients experience symptom relief after exercise, the opposite is true for ME/CFS patients...

In ME/CFS recovery time from exertion is prolonged, lasting days, weeks, months, or longer. PEM can lead to a permanent worsening of the condition and increased disability."

Post-exertional malaise

* "MEAction (The Myalgic Encephalomyelitis Action Network) is a worldwide ME/CFS patient advocacy group co-founded May 12, 2015 by Jennifer Brea and Beth Mazur. Its focus is on empowering patients to take action to improve the status of research and clinical care through nationally organized efforts with the support of local affiliate groups in countries around the world."

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It's Not Just POTS – Forms of Dysautonomia

For those of you frustrated that POTS is the only type of dysautonomia that seems to get talked about, or for anyone wanting to learn more about chronic illnesses, here's a great resource.

This page is a comprehensive introduction to the 15 forms of dysautonomia...

"Forms of dysautonomia include: Postural Orthostatic Tachycardia Syndrome, Orthostatic Hypotension, Vasovagal Syncope, Inappropriate Sinus Tachycardia, Autoimmune Autonomic Ganglionopathy, Baroreflex Failure, Familial Dysautonomia, Pure Autonomic Failure, and Multiple System Atrophy."

It’s important to note that patients can have more than one form of dysautonomia and symptoms of each form can overlap. If you think you may

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Yes, Fibromyalgia is Real

“Using tools like functional MRI, which show the brain's response to pressure and heat stimuli, researchers have been able to measure how people with fibromyalgia process stimuli like pain and pressure. Some key differences have been discovered between fibromyalgia patients and those without the condition.

Researchers at the University of Michigan in Ann Arbor have found that patients with fibromyalgia have what's called a "hyperexcitable" nervous system. In other words, pain networks in their brains are more easily activated than people who don't have fibromyalgia. Other researchers have also found impairments in a specific brain region that helps to inhibit the body's response to pain among people with fibromyalgia.

Is Fibromyalgia a Real Thing? Or Should You Be Skeptical?

Controversy has swirled around the disorder for years. However, the effectiveness of fibromyalgia syndrome treatment is making doubters beli

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What is Hypersomnia?

"Hypersomnia goes far beyond feeling “a little tired.” It’s a chronic neurological sleep disorder that disrupts daily functioning, relationships, and overall health. According to the National Institute of Neurological Disorders and Stroke (NINDS), hypersomnia is excessive sleepiness despite adequate or prolonged nighttime sleep."

Read about excessive daytime sleepiness, sleep inertia (aka sleep drunkenness), unrefreshing naps, cognitive impairment (brain fog), irritability and mood changes, automatic behaviors, anxiety about sleep, and how hypersomnia interferes with daily life:

9 Symptoms of Hypersomnia

Hypersomnia is a sleep disorder marked by excessive daytime sleepiness and long sleep durations. It often affects people with depression.

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Men and Breast Cancer Awareness

It's not just women that need to be aware and on the lookout for signs of breast cancer. Here's some more info for all the men and non-women out there (and there will be more tomorrow)...

"Breast cancer in men is the same disease as affects women. Although most of the available information is directed at women it is generally relevant for men too, as the diagnosis, treatment and survival rates ... is very similar."

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If you don't read the whole page, please read at least this section:

"Signs and symptoms - A lump or area of thickened tissue. This is most commonly painless and situated close to, or behind, the nipple. - Skin changes such as puckering or dimpling, redness or ulceration, or any change in breast shape. - Nipple changes such as a newly indrawn or distorted nipple, or itchy, scaly, or ulcerated skin on the nipple. - Fluid discharge from the nipple. This might be clear or bloodstained. - Unusual breast pain or tenderness. - Painless lump in the axilla (armpit). These symptoms may also be signs of a benign (non-cancerous) breast condition but it’s important to have any changes checked by your doctor."

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What is Sjögren's – The Basics

This fact sheet or this brochure from the Sjögren's Foundation are great starter resources for someone new to Sjögren's, or something to share with friends and family who didn't know what you're dealing with.

Also, check out sjogrens.org for more information on symptoms, management tips, patient stories, and more

Sjögren's Foundation

Receive updates about treatments, upcoming events, advocacy and more.

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Busting Epilepsy Myths | Epilepsy Awareness Month Part 2

Taken from this informative webpage by the Epilepsy Foundation, here are a few myths and facts about epilepsy that everyone should know:

❌ Myth: Someone having a seizure might swallow their tongue.

"It is physically impossible to swallow your tongue during a seizure."

✅ Fact: If someone is having a seizure, you should NOT force something into their mouth.

"Forcing something in their mouth may chip their teeth, cut their gums, or even break someone's jaw."

✅ Fact: You should NOT restrain someone who is having a seizure either.

"Most seizures end in seconds or a few minutes and will end on their own.

... STAY with the person and start timing the seizure. Keep the person SAFE. Turn the person onto their SIDE if they are not awake and aware... Call [emergency services] if the seizure lasts longer than 5 minutes; they have repeated seizures; they have difficulty breathing; the seizure occurs in water; the person is injured, pregnant, or sick; the person does not return to their usual state, it's their first seizure; or the person asks for medical help."

❌ Myth: Epilepsy is contagious.

"Epilepsy is a neurological disorder; it cannot be transferred to another person like a cold or flu."

✅ Fact: Anyone can develop epilepsy.

"Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like a stroke or heart disease."

✅ Fact: Epilepsy is not rare.

"Epilepsy is not a rare disorder, 1 in 26 people will develop epilepsy during their lifetime. It can occur on its own or alongside other health conditions..."

Facts About Seizures and Epilepsy | Epilepsy Foundation

Understanding the basic facts about epilepsy and seizures can make all the difference. Epilepsy is not a rare disorder. Find quick epilepsy

Check back in tomorrow for more info on epilepsy ✌️

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What is Epilepsy? | Epilepsy Awareness Month Part 1

Epilepsy is "a brain disorder that causes recurring, unprovoked seizures" due to "surges of electrical activity in your brain".

What Is Epilepsy?

Epilepsy, the fourth most common neurological disorder, affects people of all ages and can cause unpredictable seizures. Learn more from the

Some quick facts about epilepsy:

A doctor may diagnose you with epilepsy if you have two unprovoked seizures or one unprovoked seizure with a high risk of more.

Epilepsy is the fourth most common neurological disorder in the world.

Not all seizures are the result of epilepsy.

Seizures may be due to a brain injury or a family trait, but often the cause is completely unknown.

Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well.

If someone is having a seizure, you should NOT force something into their mouth.

Check back in tomorrow for more about epilepsy ✌️