Long-COVID refers to a condition where symptoms persist or develop after the initial COVID-19 (SARS-CoV-2) infection, lasting beyond the expected recovery period. While most people recover from COVID-19 within a few weeks, some continue to experience ongoing and often disabling symptoms. This is sometimes called Post-COVID-19 Syndrome or “Long-COVID.”

The World Health Organization defines Long-COVID as symptoms that continue twelve weeks or more after infection and cannot be explained by another diagnosis.

Symptoms may include:

• Severe fatigue and exhaustion
• Post-exertional malaise (worsening of symptoms after activity)
• Cognitive difficulties (“brain fog”)
• Shortness of breath, chest pain, or heart palpitations
• Sleep problems
• Muscle and joint pain
• Autonomic issues such as dizziness or rapid heart rate (POTS/orthostatic intolerance)
• Sensory issues such as loss of taste or smell
• There are up to 200 symptoms based on body system involvement.
• A diagnosis of Long-COVID does not require the same degree of functional impairment (such as a 50% or greater reduction in physical and mental activity) that is required for a diagnosis of ME/CFS.

Prevention of Long-COVID

Prevention: After COVID-19, many people are eager to regain their health and return to normal life as quickly as possible. However, evidence shows that pushing too hard—whether physically or mentally—during the recovery phase can worsen symptoms, prolong recovery, or even lead to a diagnosis of ME/CFS. It is therefore vital to pace yourself and take exceptional care during this time. Some individuals may be genetically more vulnerable to post-viral illness, and those already living with ME/CFS are at particular risk of relapse if they over-exert. These insights highlight the importance of rest, gradual recovery, and self-compassion for anyone recovering from COVID-19.

Types of Long COVID

1. Long-COVID (mixed symptoms): The largest group, experiencing a combination of symptoms directly related to COVID-19 (such as respiratory or cardiac problems) alongside symptoms that overlap with ME/CFS.
2. Post-COVID ME/CFS: A smaller group whose illness is indistinguishable from ME/CFS, with no ongoing COVID-specific symptoms. This group develops ME/CFS following COVID-19.
3. Long-COVID with COVID-only symptoms: A smaller group whose symptoms are only related to COVID-19 complications (e.g., lung scarring, clotting issues) and do not include ME/CFS features. As an ME/CFS support service, we do not support this group.

Occasionally, individuals may develop a chronic post-immune condition following vaccination, with symptoms overlapping those of ME/CFS. In such cases, this may be described as vaccine-triggered ME/CFS, rather than Long-COVID.

Progression

• Symptoms that last longer than twelve weeks after COVID-19 onset may be diagnosed as Long-COVID.
• If symptoms remain beyond eighteen months, particularly when ME/CFS features are dominant, a diagnosis of Post-COVID ME/CFS may be appropriate.

Treatment

Treatment for Long-COVID is similar to that of ME/CFS. It is about managing symptoms and pain.

The key to symptom management is pacing.

If PEM (post-exertional malaise) is experienced, you must avoid exercise and activities that cause fatigue or increased symptoms and conserve your energy.

The ME Association in the UK has developed a document to discuss whether ME and Long-COVID are the same condition: https://meassociation.org.uk/literature/items/long-covid-and-me-cfs-are-they-the-same-condition/ 

Fibromyalgia is a chronic condition characterised by widespread musculoskeletal pain, fatigue, and heightened sensitivity to touch, pressure, or other stimuli. It affects the nervous system, altering the way the brain processes pain signals, and can lead to a variety of physical and cognitive symptoms.

The cause of Fibromyalgia is thought to involve a combination of genetic, neurological, and environmental factors, including previous infections, physical trauma, or emotional stress. It often occurs alongside other chronic conditions, including ME/CFS.

People with Fibromyalgia generally experience pain in specific points around the body. These points are no longer used to gauge for diagnosis; however, it is a helpful way of explaining where people are likely to feel pain.

(See https://www.healthline.com/health/fibromyalgia/fibromyalgia-tender-points for more information.)

The points around the body are:

• Back of the head
• Area between the shoulders
• Front of the neck
• Top of the chest
• Outside of the elbows
• Top and sides of the hips
• Insides of the knees

Typical features include:

• Widespread, persistent pain in muscles, ligaments, and joints
• Fatigue and low energy
• Sleep disturbances and unrefreshing sleep
• Cognitive difficulties, often called “fibro fog” (memory and concentration issues)
• Headaches or migraines
• Sensitivity to light, sound, temperature, or touch
• Irritable bowel symptoms or other digestive issues
• Mood changes, including anxiety or depression

Onset and course:

• Fibromyalgia can develop gradually over time or after a triggering event such as infection, injury, or significant stress.
• Symptoms fluctuate in severity, and flare-ups may be triggered by stress, physical activity, or environmental factors.
• Fibromyalgia is a long-term condition, and while there is currently no cure, management focuses on symptom relief, pacing, lifestyle adjustments, and supportive care.

Post-Viral Fatigue (sometimes called Post-Viral Fatigue Syndrome, PVFS) is a condition where fatigue and other symptoms continue well beyond the expected recovery time after a viral infection. In most straight-forward viral illnesses, recovery takes 2–4 weeks, with symptoms disappearing by six weeks. However, a small percentage of PVF/S patients may take several months to recover.

Typical features include:

• Persistent fatigue and lack of energy
• Reduced tolerance to activity (physical or mental)
• Poor concentration or “brain fog”
• Unrefreshing sleep
• Muscle aches or generalised pain
• Slower recovery from exertion

For many, PVF/S improves gradually over time as the body heals. If symptoms persist for at least six months in adults, or three months in children, and there is no significant improvement, the condition may be diagnosed as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Dysautonomia is a term for a group of diseases that include Postural Orthostatic Tachycardia Syndrome (POTS), Neurally Mediated Hypertension (“NMH”) and Orthostatic Intolerance (OI).

In these conditions, the autonomic nervous system (“ANS”) is dysregulated, which can lead to blood pressure problems, heart problems, trouble with breathing and swallowing, and erectile dysfunction in men.

Postural Orthostatic Tachycardia Syndrome (POTS)

Main symptoms include:

• Fatigue
• Headaches
• Light-headedness and dizziness
• An extreme increase in heart rate upon moving from a supine position to sitting position or standing position (extreme defined as over 100bpm). Diagnostic criteria involves if it rises by 30bpm in adults or 40bpm in youth, within 10 mins of standing. For most individuals living with POTS, this means experiencing an increase in heart rate above 100 to 200 compared to the expected heart rate of 60.
• Exercise intolerance
• Nausea
• Diminished concentration and forgetfulness
• Tremulousness (shaking)
• Coldness or pain in the extremities
• Excessive sweating
• Chest pain and shortness of breath.
• Sleep difficulties
• Anxiety (as an autonomic dysfunction)

Neurally Mediated Hypertension (“NMH”)

Abnormal reflex lowering of blood pressure during upright posture (low blood pressure created via the nervous system).

• Low blood pressure from faulty brain signals / ‘miscommunication’ between the heart and brain.
• Causes blood pressure to drop when a person has been standing for long periods, which is the opposite of what is needed, i.e. for the heart to beat faster to pump blood back up to the brain. Many people will not be able to “stand still” and they will walk to pump their legs in an attempt to push blood back up to the heart unconsciously.
• Leads to dizziness, nausea, and fainting.

Dr. Vallings refers to this as “3^rd Isle of the Supermarket;” after getting from the car to the supermarket and around a few aisles, fainting and falling becomes a possibility as there is a sudden feeling of the plug being pulled, marked by nausea, dizziness, fatigue, and brain fog.

Orthostatic Intolerance (“OI”)

POTS and NMH both have Orthostatic Intolerance as their primary symptom.

Orthostatic Intolerance is an umbrella term for the development of symptoms when in an upright posture.

OI can be caused by standing in an upright position for long periods of time, after being in a warm environment, immediately after exercise, after an emotionally stressful event, after eating (blood flow moved to digest food), or if salt and fluid intake is inadequate. These symptoms subside when returning to a horizontal position.

Symptoms of OI include:

• Light-headedness
• Altered vision
• Headache
• Heart palpations
• Exercise Intolerance
• Fatigue
• Neurocognitive deficits
• Anxiety
• Nausea
• Abdominal discomfort
• Tremulousness
• Sweating
• Weakness
• Syncope (fainting)