What is Long COVID?

Long COVID is also known as Post-acute COVID-19 syndrome (PACS), Post Acute Sequelae of COVD-19 (PASC), COVID Long Haulers, or Long-term COVID-19.

These terms describe a collection of lingering symptoms devastating the lives of many COVID-19 survivors. These symptoms persist in an estimated 10–20% of COVID-19 patients, regardless of infection severity, even after the patient no longer tests positive for the virus or antibodies. While recovery times for COVID-19 vary from person to person, Long COVID generally refers to cases where symptoms continue to persist for 90 days or more.

Preliminary 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. Among patients with medical visits, 68% received a new diagnosis and 38% visited a new specialist who did not treat the patient in the year before the COVID-19 diagnosis.

Who We Are

The Long COVID Alliance is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.

Our Core Values:

  • Collaboration — Long COVID has highlighted many challenges in science, research, and healthcare. We can overcome these challenges by working together.
  • Science Strong — Our Alliance relies upon researchers and scientists from both public and private sectors. Peer-reviewed, evidence-based practices are core to the Alliance’s efforts.
  • Patient-Centered — “Nothing about us, without us.” The post-viral patient voice and experience is key. The Alliance strives to include patient-leaders at every stage of its work.
Goals: 1. Advocate for Long Covid scientific investment and secure resources for quality research. 2. Leverage public and private sector resources to create post-viral research infrastructure. 3. Ensure continued growth, equity, and sustainability of research infrastructure, beyond pandemic response. 4. Translate research results into diagnostics, treatments, and cures for millions

Our Priorities:

  • Ensuring meaningful patient participation
  • Confronting systemic bias and racism in the Long COVID response
  • Advancing health equity initiatives
  • Facilitating data harmonization
  • Leveraging existing post-viral disease knowledge and infrastructure
  • Expediting public-private partnerships
  • Creating a platform for thought leaders
  • Connecting policy makers with patients and scientists
  • Providing expert guidance and resources to media and policy makers

Need Support?

If you are a person looking for resources or patient support, please click here to send a message to our team.

Please understand that we provide general referrals and resources and are not able to respond to medical questions about specific doctors, treatments, or provide legal guidance.