long covid declaration

WE, PATIENT ORGANIZATIONS AND ADVOCATES LIVING WITH LONG COVID, DECLARE:

• Long COVID is a new complex chronic condition caused by SARS-CoV-2. Born in 2020 from the lived experience of patients, the term broke the early myth that COVID-19 was either a brief mild illness or a rapidly fatal disease. It sparked a global grassroots movement demanding recognition and research. Long COVID is a vascular, chronic multisystemic condition caused by a virus that challenges medicine and public health in unprecedented ways.

• Long COVID affects every organ and body system: cardiovascular, neurological, gastrointestinal, respiratory and beyond. All its chronic sequelae demand immediate action. Long COVID kills*, more or less slowly.

• There is vast research already on Long COVID to build upon, which must be translated into clinical practice, biomarkers, and to clinical trials focused on developing curative or disease-modifying treatments. It is an area of utmost urgency. Five years have passed since the start of the pandemic: no further delay should be acceptable.

• However, as a new chronic and evolving condition, the extent of Long COVID’s impact is not yet fully known. Issues such as viral persistence, immune dysfunction, and cardiovascular sequelae are a serious concern, and remain so for the future. We need active care, with close monitoring for risks such as, but not limited to, cancer, cardiovascular events, and neurological diseases. Adequate tests must be used – and made more accessible. This is a pressing demand.

• Clinical guidelines for Long COVID must encompass the full range of the condition’s diverse manifestations. Each presentation can be severe, and patients often experience multiple symptoms simultaneously. Organ damage can appear far from the acute phase of the infection.

• Prevention must be pivotal to both clinical practice and research. Clean air, masks, research and equitable access to preventive treatments are non-negotiable. Preventing Long COVID and reinfections is also preventing all the conditions and additional damage it refers to.

• It is an absolute ethical necessity that every declaration and decision about Long COVID research and care must involve directly concerned Long COVID experts who assess the entire spectrum of the disease. This is the only way to ensure an unbiased evaluation of Long COVID needs and priorities, and to avoid the exclusion of a major proportion of patients by focusing only on one symptomatic presentation. 

Without adherence to this essential principle, any statement made about us holds no legitimacy.

NOTHING ABOUT US WITHOUT US.

• We are still canaries in the coal mine. What we went through in the early pandemic hotspots is still happening to others worldwide, sometimes more slowly, and potentially shaped by subclinical or asymptomatic disease and repeated reinfections. The most vulnerable, those without access to broad information or quality care, tend to be the most impacted by organ damage and life-threatening events. We will not accept their abandonment, which leads to massive losses of opportunity for timely care and survival, and perpetuates the systemic silencing of those already left behind.

• The erasure of Long COVID’s cause is a crisis. As governments dismantle testing for acute COVID-19, they erase the starting point of a chronic condition. Without knowledge of infection, patients will face even more dismissal and barriers to care. We will not endorse this collective retreat from responsibility. This is also why we do not support attempts to rename Long COVID: other terms usually downplay the virus’s role in the condition, and this reflects both a lack of consideration for those who raised the alarm about Long COVID, and a failure to truly understand their message.

WE DEMAND DEDICATED ACTION. LONG COVID VOICES MUST LEAD LONG COVID POLICIES AND REPRESENTATION.

* Note: In the US alone, more than 5,000 persons living with Long COVID had died as of January 2024. This number is likely a significant undercount. https://www.medscape.com/viewarticle/long-covid-has-caused-thousands-us-deaths-new-cdc-data-2024a100006l

If you agree with these statements, you can sign with a formulary provided by one of the organisations and activists below :

Writers and Organisers:

Published on 27th October 2025

Signatories:

Dr Elisa Perego MA PhD, University College London

International Long Covid Awareness

Winslow Santé Publique

Long COVID Aragón

World Health Network

Col·lectiu d’Afectades i Afectats persistents per la COVID-19

MaskTogetherAmerica

Solenn Tanguy, president of association Winslow Santé Publique, France

Delphine Crespo, president of Long COVID Aragón, Spain

Silvia Soler, Portaveu Col·lectiu d’Afectades i Afectats persistents per la COVID-19, Spain

Angela Laffin, Activist/Founder of International Long Covid Awareness (ILCA), USA

Yaneer Bar-Yam, co-founder WHN, USA

Julie Lam, founder, MaskTogetherAmerica, USA

DAGL – Deutsche Arbeitsgemeinschaft für Lufthygiene e.V., Germany

Association Covid Long Solidarité

Joerg Danzer, DAGL[.]de, Germany

Nora Schumann, Member of Deutsche Arbeitsgemeinschaft für Lufthygiene e.V., Germany

Eva Hottenroth, IGÖ Austria

Dr. Jordi Matias-Guiu Antem, Neurólogo del Hospital Clínico San Carlos, Madrid, Spain

Dr. Marjorie E.Roberts, Advocate

Dara York patient, RN, Organized LCDC

Marta Esperti, Founder of the first Italian support group « Long Covid Italia », patient-advocate, political and social sciences researcher

Dr. Robi Tamargo, Long COVID patient, Public Health Advocate, Clinical Psychologist & Advisor Mask Together America, USA

Michael Hoerger, PhD, MSCR, MBA, population scientist

Deborah Holloway, patient and activist, Canada

Sidney Hollingsworth, Organizer, USA

Nima SADAGHIANI, MD, France

Judy Stone, MD; physician and medical journalist

Dr Rae Duncan, Consultant Cardiologist & Long Covid Research Clinician, Long Covid Advisory Team, World Health Network

Adam Van Bavel, Patient Advocate + Founder, Maryland Indoor Air Quality Advocates

Asociación Cántabra de afectados por secuelas de COVID y COVID Persistente

Aránzazu Algar Santacoloma , Presidenta Asociación Long Covid Cantabria, España

Emilia Morate Muñoz, member of the Association Long COVID of Cantabria, Spain

Asociación Covid Persistente Asturias

María José Pérez Rodríguez. Presidenta de Asociación Covid Persistente Asturias, Spain

Roger Paredes, Physician

David Lerma Irureta, MD and Long-Covid researcher

Andrea Bazo, Researcher, Spain

Ana Medel, Researcher, Spain

Jon Schoorlemmer, researcher, Spain

Michaël Rochoy, MD PhD, France

Long Covid Foundation

Salvador Macip, doctor, UK

Mask Together Colorado

Dr Maria Gillespie, MaskTogetherColorado founder

Dra. Rosa Magallón Botaya, researcher, Spain

Dr. ÁLVARO FLAMARIQUE PASCUAL, Medicina Interna Quirónsalud Zaragoza

Maite Garolera, Researcher head of Brain, Cognition and Behavior, Terrassa-Barcelona, Spain

Gemma Torrell, MD

Lourdes Mateu, physician and researcher

Marta Massanella, Researcher

Ana Gervassi

Anna Prats París, Clinical neuropsychologist and researcher

COPAIBA, Covid Persistent Illes Balears

Antonio Portells Monjo, presidente de COPAIBA

Tommaso Francesco Aiello, doctor, Spain

Carmina Rodriguez Fumaz, Ph.D. Infectious Disease Department, Germans Trias i Pujol University Hospital, Badalona, Barcelona, Spain

Rebecca A Robertson

Michelle Beakley, member of Mask Together America

Amy Mitchell, patient, activist, member of Long Covid Action Project (LCAP)

Dawn Lee Fontaine

Amy, RN, activist, and patient