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A lesson in chronic multisystemic diseases

Imagine...

…waking up every day to extreme fatigue, nausea, body pain, weight fluctuations, and more. You constantly feel too tired, weak, and in pain to perform day-to-day functions or engage in your favorite activities. This is a daily reality for millions of people who suffer from ME and other related chronic post-infection diseases, such as long-COVID, POTS, EDS, MCAS, NCS, Chronic Lyme/MSIDS, among others.

These are multisystemic diseases that simultaneously affect the brain, nerves, muscles and most every vital organ.

While each has its own symptoms, these diseases are often characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic indicators, chronic pain, and other symptoms made worse by exertion of any sort—physical, emotional, or mental.

The root cause of these diseases remains a mystery, however, in many cases symptoms have been known to be activated by an infection, virus, genetics, or a triggering event, such as stress or extraordinary activity.

These diseases can last for years or a lifetime. Often there is no proven diagnostic test, treatment, or cure in sight, leading sufferers down a multi-year journey to find the care that offers a better quality of life.

Many see the afflicted as typical or even ‘healthy’ in appearance. What they don’t see is the debilitating pain, fatigue, cognitive impairment, and the onset of “crashing” due to exertion.

Multisystemic diseases impacting most every system in the body.

Unrefreshing sleep

Unrefreshing sleep, or sleep that remains non-restorative regardless of duration. Abnormal sleep disorders include delayed onset of sleep, fragmented sleep, light sleep, and deep sleep.

Post Exertional Malaise (PEM)

PEM occurs is a consequence of exertional activity worsening a patients’ symptoms and function after exposure to physical, cognitive, emotional, or orthostatic stressors. PEM manifests in the form of a crash that can occur 24-48 hours after peak exertion. The crash itself can last for days, weeks, or even months.

Cognitive impairment

Cognitive performance often worsens because of continued physical, mental, emotional, and/or orthostatic exertion. Symptoms can wax and wane with energy expenditure, manifesting as complications with short-term memory, concentration, and multi-tasking.

Orthostatic intolerance

Orthostatic Intolerance is a term used to describe the exacerbation of symptoms during upright posture, that are relieved or ameliorated by lying down or reclining. Symptoms may be presented as cognitive processing issues, lightheadedness, fainting, headache, fatigue, tremors, heart palpitations, exercise intolerance, nausea, sensitivity to heat, and sleep abnormalities.

Chronic pain

Chronic pain amplification disorder occurs when the volume of pain sensation in the brain is turned up too high. It may manifest as stiffness, achiness, sharp shooting pain, tingling and numbness, light and sound sensitivity, and may originate in the muscles, joints, bowel, bladder, pelvis, chest, head.

Immune impairments

Immune impairments include acute infection-like issues, perpetual flu-like symptoms, sore throat, tender lymph nodes, fever, new or worsened sensitivities to certain substances, such as foods, odors, medications, or chemicals.

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Making a difference in people’s lives.

Chronic post-infection diseases continue to test the medical community. While a cure is not immediate, there is hopethrough the efforts of highly reputable research, patient care, and disease advocacy organizations.

Additional resources

Beyond our coalition partners, there are a variety of other resources that can be useful to those living with chronic post-infection diseases. Explore this list for more information:

US ME/CFS Clinician Coalition diagnostic guidelines

US ME/CFS Clinician Coalition testing recommendations 

US ME/CFS Coalition Treatment Recommendations

Centers for Disease Control and Prevention | ME/CFS

Centers for Disease Control and Prevention ME/CFS Patient Toolkit

National Academy of Medicine ME/CFS Key Fact
National Institutes of Health ME/CFS
Mayo Clinic Proceedings | ME/CFS Essential of Diagnosis and Management 
ME/CFS in Young People: A Primer

Chronic multisystemic disease glossary

Myalgic Encephalomyelitis (ME) is a complex, fatiguing long-term medical condition diagnosed by required primary symptoms and criteria, and often involves a broad range of symptoms. Distinguishing core symptoms are lengthy exacerbations or “flares” of the illness after ordinary physical or mental activity, known as post-exertional malaise (PEM); greatly diminished capacity to accomplish tasks that were routine before the illness; sleep disturbances, orthostatic intolerance (difficulty sitting and standing upright); cognitive dysfunction, and chronic pain throughout the body.

Chronic Lyme Disease is a disease transmitted to humans by the bites of infected ticks. The disease can affect multiple body systems and produce a broad range of symptoms. The most common sign of infection is an expanding red rash that appears at the site of the tick bite about a week after it occurred. Other early symptoms may include fever, headache, and tiredness. If untreated, symptoms may include the inability to move one or both sides of the face, joint pains, severe headaches with neck stiffness, and heart palpitations. Despite appropriate treatment, about 10 to 20% of people develop joint pains, memory problems, and tiredness for at least six months.

Postural Orthostatic Tachycardia Syndrome (POTS) is a condition in which a change from lying to standing causes an abnormally high increase in an individual’s heartbeat. Symptoms may include lightheadedness, trouble thinking, blurred vision, or weakness. Commonly associated conditions include ME, EDS, MCAS, FMS, IBS, insomnia, and chronic headaches.
Ehlers-Danlos Syndrome (EDS) is a group of genetic connective-tissue disorders. Symptoms may include loose joints, joint pain, stretchy velvety skin, and abnormal scar formation. Complications may include aortic dissection, joint dislocations, scoliosis, chronic pain, and early osteoarthritis.
Sjögren’s Syndrome (SJS) is a long-term autoimmune disease that affects the body’s moisture-producing glands and often seriously affects other organ systems, such as the lungs, kidneys, and nervous system. Primary symptoms are dryness (dry mouth, eyes, or skin), pain and fatigue, a chronic cough, numbness in the arms and legs, feeling tired, muscle and joint pains, and thyroid problems. Those affected are also at a 15% increased risk of lymphoma. While the exact cause of SJS is unclear, it is believed to involve a combination of genetics and environmental triggers, such as exposure to a virus or bacterium.
Multiple Sclerosis (MS) is the most common immune-mediated disorder affecting the central nervous system. MS disrupts the ability of parts of the nervous system to transmit, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems. Symptoms include bladder overactivity, bowel issues, cognition problems (anxiety, depression, limited critical thinking, learning, and planning), fatigue, hearing impairment or loss, vision issues, mobility problems (dizziness, vertigo, lightheadedness, coordination issues, tremors, muscle problems, numbness, or pervasive tingling pain).
Median Arcuate Ligament Syndrome (MALS) is a rare condition characterized by abdominal pain attributed to compression of the celiac artery and the celiac ganglia by the median arcuate ligament. Patients with MALS reportedly experience stomach pain, which may be associated with eating and which may result in anorexia and weight loss. The pain can be in the left or right side, but usually where the ribs meet. Other signs are persistent nausea, lassitude (especially after a heavy meal) and exercise intolerance. Diarrhea is a common symptom, and some experience constipation. While some experience vomiting, not everyone does. Exercise or certain postures can aggravate the symptoms.
Interstitial Cystitis (IC), also known as bladder pain syndrome, is a type of chronic pain that affects the bladder and pelvic floor. Symptoms include feeling the need to urinate right away, needing to urinate often and pain with sex. Many of those affected also have irritable bowel syndrome and fibromyalgia. Interstitial Cystitis is associated with depression and a lower quality of life.
Crohn’s Disease is a type of inflammatory bowel disease that may affect any segment of the gastrointestinal tract from the mouth to the anus. Symptoms often include abdominal pain, diarrhea, fever, abdominal distention, and weight loss. Other complications outside the gastrointestinal tract may include anemia, skin rashes, arthritis, inflammation of the eye, and fatigue. Bowel obstruction may occur as a complication of chronic inflammation, and those with the disease are at greater risk of colon cancer and small bowel cancer. While the precise causes of Crohn’s Disease are unknown, it is believed to be caused by a combination of environmental, immune, and bacterial factors in genetically susceptible individuals.
Addison’s disease is a rare and chronic endocrine disorder. Addison’s disease is when the body does not produce enough of the hormone called cortisol. This hormone helps the body deal with stress. It helps with maintaining blood pressure and controlling the heart’s functions. It slows the rate of inflammation caused by the body’s immune system. It helps with controlling the way insulin is used, and the chemical reactions of proteins, carbohydrates, and fats in the body. People with the disease suffer from weight loss, fatigue, weakness, and low blood pressure. Some people also get darkened patches of skin.
Long-COVID, also known as long-haul COVID, is a condition appearing or persisting after the typical convalescence period of coronavirus disease 2019 (COVID-19). Long-COVID can affect nearly every organ system, introducing respiratory system disorders, nervous system and neurocognitive disorders, mental health disorders, metabolic disorders, cardiovascular disorders, gastrointestinal disorders, malaise, fatigue, musculoskeletal pain, and anemia. A wide range of symptoms are commonly experienced, including fatigue, headaches, shortness of breath, loss of smell, muscle weakness, low fever, and cognitive dysfunction.
Multi-Systemic Infectious Disease Syndrome (MSIDS) is a “symptom complex” that can create a persistent and tenacious illness. Instigated by Lyme disease and/or associated tick-borne co-infections, other factors such as parasitic or fungal infections, allergies, environmental toxicity, compromised immune function—and many others—can create an illness that may be unique to an individual, making diagnosis and treatment difficult. Symptoms can include abnormal liver functions, allergies, autonomic nervous system dysfunction, endocrine abnormalities, enzyme deficiencies, gastrointestinal abnormalities, immune dysfunction, inflammation, nutritional deficiencies, POTS, sleep disorders, day sweats, night sweats, chills, and shortness of breath with unexplained cough.
Mast Cell Activation Syndrome (MCAS) is an immunological condition in which mast cells inappropriately and excessively release chemical mediators. This results in a range of chronic symptoms, sometimes including anaphylaxis, or near-anaphylaxis attacks, which is a serious allergic reaction that can include throat or tongue swelling, shortness of breath, vomiting, lightheadedness, or low blood pressure. The reactions are rapid in onset and may cause death.
Fibromyalgia Syndrome (FMS) is a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include tiredness to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndrome, bowel or bladder problems, numbness and tingling, and sensitivity to noise, lights or temperature. Fibromyalgia is frequently associated with depression, anxiety, and post-traumatic stress disorder (PTSD). The cause of fibromyalgia is unknown; however, it is believed to involve a combination of genetic and environmental factors, such as psychological stress, trauma, and certain infections.
Systemic Lupus Erythematous (SLE) is the most common form of lupus. SLE can cause inflammation of multiple organs or organ systems in the body, either acutely or chronically. Symptoms of SLE vary from person to person, and they may come and go and change over time. Lupus shares symptoms with other diseases, which can make it difficult to diagnose. The most common symptoms include skin rashes, pain or swelling in the joints (arthritis), swelling in the feet, and around the eyes (typically due to kidney involvement), extreme fatigue, and low fevers.
Dysautonomia is a condition in which the autonomic nervous system (ANS) does not work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Dysautonomia has many causes, not all of which may be classified as neuropathic. Several conditions can feature dysautonomia, such as Parkinson’s disease, multiple system atrophy, dementia, Ehlers-Danlos syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), as well as other autonomic issues. Symptomatic treatment is available for many symptoms associated with dysautonomia, and some disease processes can be directly treated.
Small Intestinal Bacteria Overgrowth (SIBO) is a disorder of excessive bacterial growth in the small intestine. Patients with bacterial overgrowth typically develop symptoms of nausea, bloating, vomiting, malnutrition, weight loss and malabsorption. Patients with bacterial overgrowth that is longstanding can develop complications of their illness because of the malabsorption of nutrients, including anemia, elevated folate, vitamin B12 deficiency, or other nutritional deficiencies.
The signs and symptoms of Nutcracker Syndrome (NCS) are all derived from the outflow obstruction of the left renal vein. The compression causes renal vein hypertension, which can lead to anemia and abdominal pain. The abdominal pain may improve or worsen depending on positioning. Patients may also have the presence of protein in their urine depending on how they sit or stand. NCS can also result in left testicular pain in men or left lower quadrant pain in women, especially during intercourse and during menstruation.
Hashimoto‘s Disease is an autoimmune disease in which the thyroid gland is gradually destroyed. Early on, symptoms may not be noticed. Over time, the thyroid may enlarge, forming a painless goiter. Many symptoms are attributed to the development of Hashimoto’s thyroiditis. The most common symptoms include fatigue, weight gain, pale or puffy face, feeling cold, joint and muscle pain, constipation, dry and thinning hair, depression, panic disorder, a slowed heart rate, heavy menstrual flow or irregular periods, as well as problems getting pregnant and maintaining the pregnancy. A rare but serious complication is thyroid lymphoma.

Graves’ disease is an autoimmune disease that affects the thyroid. It frequently results in and is the most common cause of hyperthyroidism. It also often results in an enlarged thyroid. Symptoms of hyperthyroidism may include irritability, muscle weakness, sleeping problems, a fast heartbeat, poor tolerance of heat, diarrhea, and unintentional weight loss. Other symptoms may include thickening of the skin on the shins. About 25 to 80% of people with the condition develop eye problems. The exact cause of the disease is unclear; however, it is believed to involve a combination of genetic and environmental factors.

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