What is Long Covid?

While most patients recover from COVID-19, as many as half experience lingering symptoms six or more months after their initial infection. Long Covid is the patient-preferred term used to describe this experience of post-infection illness. Long Covid includes a broad range of symptoms that can be disabling, prevent recovery to pre-infection health, and thwart return to the workforce.

Long Covid is also known as Post-COVID syndrome, Long Haulers, Long-term COVID-19, Post-Acute COVID Syndrome (PACS) or LTC-19.

The Centers for Disease Control (CDC) estimate that 6% of adults infected with SARS-CoV-2, including those who were asymptomatic, are currently experiencing Long Covid — or 12.5M individuals. Researchers anticipate that many patients will have this disease for their lifetime.

Reports and data about Long Covid symptoms and patient experiences contain many similarities to other chronic illnesses known to be associated with viral triggers, such as:  Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, and Mast Cell Activation Syndrome (MCAS), just to name a few.

Additional Resources:

Centers for Disease Control (CDC) Webinar: Treating Long COVID: Clinician Experience with Post-Acute COVID-19 Care (PDF)

Will Long Covid Lead to ME/CFS?

About 80% of people with ME/CFS report that their symptoms followed a viral infection[1] and research shows that previous coronaviruses (SARS and MERS) triggered ME/CFS in about 11% of patients[2]. One 2009 study of SARS patients reported that 40% of patients continued to experience ME/CFS-like symptoms four years after their initial viral infection[3]. If the novel coronavirus behaves like SARS and MERS in regards to lasting ME/CFS symptoms, as early evidence suggests is likely, COVID-19 could potentially double the existing number of patients with ME/CFS in the United States over the next two to four years.

Patient Resources

While there are still many open questions, the ME/CFS community is here for you as a resource ready to share its experience.

*Most Important* Preventing Further Harm: PACE Yourself

Many studies and reports from people with ME/CFS show that exercise or intense exertion at the early stages of illness leads to significantly worse long-term health outcomes and potential disability.

“Pacing refers to spacing out your activities during the day so that you’re able to stay within the limits of what your body can handle without exacerbating your symptoms. Another way to think of it is that pacing is a way to keep you inside your ‘energy envelope’—the envelope that contains your energy stores for any given day.”

— Toni Bernhard J.D., Pacing: The Chronically Ill Person’s Best Friend

Visit our patient resources page for information about finding a doctor, securing a personal support system, tracking symptoms, and more. 

Mental Health During Isolation

Crisis Support:

Crisis Text Line: https://www.crisistextline.org

  • Crisis Text Line is a nonprofit organization that offers crisis support through texting, 24 hours a day, 7 days per week.
    From the US text: 741741
    From Canada text: 686868
    From the UK text: 95258

Further Reading:

Learn more about Long Covid

Immune-Based Prediction of Long Covid and Implications for ME/CFS

Solve M.E. President and CEO Oved Amitay on ME/CFS and Long COVID

How the Study of COVID-19 Will Impact Our Understanding of ME/CFS

ME/CFS Informs Covid-19

Will COVID-19 Lead to ME/CFS in Some People?

The Link Between ME/CFS and Long Covid

Frequently Asked Questions

The Centers for Disease Control (CDC) estimate that 29% of adults infected with SARS-CoV-2, including those who were asymptomatic, ever experience Long Covid.

The most frequent prolonged symptoms are persistent fatigue, brain fog, and depleted energy after even a minimal effort — having a profound impact on everyday life. Researchers anticipate that many patients will have this disease for their lifetime.

Long Covid, or Long Haul Covid-19, describe a collection of some of the lingering symptoms:

  • Cough
  • Shortness of breath / Difficulty breathing
  • Fatigue (tiredness) or Disabling Fatigue (PEM, PENE)
  • Muscle/joint pain, body aches, or chest pain
  • Headache
  • Sleep Disruption / Unrefreshing Sleep
  • Difficulty with thinking and concentration (sometimes referred to as “brain fog”)
  • Loss of taste or smell
  • Fast-beating or pounding heart / large swings in heart rate and blood pressure

Mathematical models produced by the Solve Long Covid Initiative reflect that Long Covid affects an estimated 10-30% of people infected with SARS-CoV-2, including those who were asymptomatic.

As of January, 2022:

  • 22 million U.S. adults are living with Long Covid (LC) – close to 7% of the population.
  • 7 million are experiencing Disabling Long Covid (DLC) – 2.3% of the population.

Researchers anticipate that many patients will have this disease for their lifetime.

Read our whitepaper here.

7 to 14 million Long Covid cases (2–4% of the total U.S. population) are expected to result in long term disability — placing individuals at risk of lifelong complex health problems and economic ruin from healthcare costs, unemployment, denied benefits, eviction, and homelessness.

The Individual financial burden of Long Covid is staggering.

As of January 2022, the cumulative U.S. cost of Long Covid is estimated at more than $386 billion.

Experts say the condition is a major public health concern, given the devastating impact it has on society, ranging from increased health care costs to economic and productivity losses.

Post-infection illness is not new. It is a documented, yet still misunderstood medical and research challenge. Like other post-infection illnesses, Long Covid is a complex, multi-system illness that increases medical needs. People with these illnesses require additional services, testing, visits, and specialists. The complexity of these illnesses is a contributing factor to increased healthcare expenses and costs for this patient population.

Further reading:

 Evengård B, Jonzon E, Sandberg A, Theorell T, Lindh G. Differences between patients with chronic fatigue syndrome and with chronic fatigue at an infectious disease clinic in Stockholm, Sweden. Psychiatry Clin Neurosci. 2003 Aug;57(4):361-8. doi: 10.1046/j.1440-1819.2003.01132.x. PMID: 12839515.

[2] Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A; Dubbo Infection Outcomes Study Group. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. 2006 Sep 16;333(7568):575. doi: 10.1136/bmj.38933.585764.AE. Epub 2006 Sep 1. PMID: 16950834; PMCID: PMC1569956.

[3] Lam MH, Wing YK, Yu MW, Leung CM, Ma RC, Kong AP, So WY, Fong SY, Lam SP. Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up. Arch Intern Med. 2009 Dec 14;169(22):2142-7. doi: 10.1001/archinternmed.2009.384. PMID: 20008700.

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