Some survivors of COVID-19 have lingering symptoms long after their initial illness, regardless of their initial infection severity. Long Covid can a be devastating and life changing illness. The below information is for long haulers, their loved ones, and anyone else who wants to learn more about this growing health crisis.
Have you had COVID-19?
What is Long Covid? What are the symptoms?
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. The World Health Organization (WHO) published a definition of Long Covid in October 2021: “Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.” The WHO estimates that 10 to 20% of COVID-19 patients experience lingering symptoms, although more research is needed to get a true picture of the extent of Long COVID.
Long COVID symptoms include, but are not limited to:
- Difficulty breathing or shortness of breath
- Post exertional malaise (worsening of symptoms following even minor physical or mental exertion)
- Cognitive impairment (brain fog)
- Hair Loss
- Fast-beating or pounding heart
The American Academy of Physical Medicine and Rehabilitation (AAPM&R) has created a PASC Dashboard to estimate those affected including state and county-level data and trends over time.
ME/CFS and other Post-Viral Conditions:
Many of the symptoms of Long COVID are like those experienced by patients with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic autonomic dysfunction and postural orthostatic tachycardia syndrome (POTS), and Fibromyalgia. Mast cell activation symptoms (MCAS) are increased in Long COVID patients and there are indications that Long COVID may be an autoimmune reaction, as seen in autoimmune diseases.
ME/CFS is a complex and debilitating multi-system, chronic disease often associated with viral infections. Up to 80 percent of cases of ME/CFS are initiated by an infection. At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, no FDA-approved treatment, and patients often suffer for life.
History shows that when a severe infection like COVID-19 sweeps through the population, ME/CFS often follows. Prior studies of other viral outbreaks, including SARS, MERS, West Nile virus and even Ebola, show long-term symptoms akin to those seen in ME/CFS in the aftermath of acute infection, ranging from 11 to 90%. Cases of ME/CFS may double as a result of the pandemic.
What should I do if I think I have Long COVID?
Click here to take our short quiz based on criteria identified by Long Covid clinicians and researchers to see if you may have Long Covid. While we cannot provide medical advice, we hope this simple quiz, which is grounded in science, is helpful in understanding your symptoms.
The Centers for Disease Control and Prevention (CDC) has issued interim care guidance for Long COVID (click here). If you may have Long Covid or ME/CFS, Solve M.E. strongly encourages you to adopt pacing, or activity management, at a level that fits your current health and energy capacity. 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
Resources for Pacing:
- Management and Treatment Of ME/CFS (PDF) – Solve M.E. resource page with guidance and worksheet on pacing to prevent Post Exertional Malaise (PEM)
- How to Manage Post-Viral Fatigue after COVID (PDF) – Pacing guidance from the Royal College of Occupational Therapists
- Pacing and Management Guide (PDF view or download) – #MEAction’s 4-page printable guide to pacing
- Activity and Energy Management – Pacing (webpage and video) – From Dialogues for ME/CFS, a collection of videos covers a variety of topics, giving a multi-faceted understanding of the disease from the perspectives of medical professionals, exercise scientists, and research professionals specializing in ME/CFS.
- Q&A: Pacing for Chronic Illness / I Did A Pacing Master Class (blog) – two ‘how to pace’ posts from Natasha Lipman, BBC reporter and blogger with ME/CFS
- How to Manage Long COVID symptoms and Fatigue (blog)- Guidance from people with ME/CFS, by Megan E. Doherty
Exploring a New Diagnosis:
- A Comprehensive Guide for COVID-19 Longhaulers and Physicians (Google doc)- Guide created by the COVID-19 Longhauler Advocacy Project
- List of Long COVID Support Groups (webpage)
- Find Help (webpage)- database of free or reduced cost programs for food assistance, help paying bills, and other services including new programs for the COVID-19 pandemic
- CDC Interim Guidance for Long COVID (webpage)
- Los Angeles Times journalist Sandhya Kambhampati has written extensively about her own Long Covid journey, including this piece about how people with Long Covid can get the care they need.
Finding Medical Care:
Recovery from COVID-19 is posing a new set of challenges for patients and physicians alike. There is so much we don’t know about Long COVID, but we can draw from the expert knowledge of clinicians who treat similar illnesses. Note that Solve M.E. does not have professional medical relationship with these clinicians and cannot confirm the expertise or quality of care provided by these clinics – only that other patients have utilized them.
- ME/CFS Experts in the United States (PDF)
- List of Post COVID Care Centers (PCCCs): US List, Survivor Corps Map
- COVID Competent Health Care Providers List (Spreadsheet)
Employment, Paid Leave, and Disability Resources:
- Families First Coronavirus Response Act: Employee Paid Leave Rights (webpage) – from the U.S. Department of Labor regarding employee rights and protections related to COVID-19.
- COVID-19 Insurance Denial Handbook (PDF) – From long-term disability legal specialists Kantor & Kantor LLP, this guidebook addresses what to do when your Long Term Disability insurance claim is denied.
- Navigating Career & Life Transitions with Chronic Illness (video) – From Body Politic, a conversation with a rehabilitation counselor who specializes in career transitions for people with chronic illness/disabilities.
- Coronavirus (Covid-19) and disability: How to do it, with a disability specialist who has gone through it herself (webpage) – An interview with Alison Sbrana of Body Politic
- The Sleepy Girl Guide to Social Security Disability (webpage)- A self-advocacy guide to Social Security Disability.
- Helping Patients Access Disability and Accommodations (webpage)- Accommodations for school and work from the U.S. ME/CFS Clinician Coalition
Community and Peer Support:
“To the COVID-19 patients who are searching for information, support, and community, these are the things I wish someone had told me when I became ill.”
— Jennifer Diamond, MA, LMFT, COVID-19 Long-Haulers and the Burden of Doubt
- Body Politic Support Group (Slack platform) – a slack support group with members from all over the world who are experiencing symptoms of or are recovering from COVID-19. Hosted by Body Politic is a queer feminist wellness collective, event series, and media company.
- COVID-19 Longhauler Advocacy Project (Facebook group) – created by a Covid-19 Longhauler for other Longhaulers and those seeking education, support and who would like to help raise awareness.
- Long Covid Support Group (Facebook group) – a private group for people with Long Covid or people who are caring for someone with Long Covid.
- #MEAction Long COVID-19 Group (Facebook group) – for long-COVID patients to connect with experienced ME/CFS patients.
How can I tell the difference between symptoms of ME/CFS, COVID-19, or the Flu / Common Cold?
Because some of the symptoms of ME/CFS, flu, cold, and COVID-19 can be similar, it may be hard to tell the difference between them based on symptoms alone, and testing may be needed to help confirm a diagnosis. Both ACUTE COVID-19 and Flu can have varying degrees of signs and symptoms, ranging from no symptoms (asymptomatic) to severe symptoms and death. Similarly, the symptoms of ME/CFS can vary in severity and frequency. It is common for people with ME/CFS to experience periods of improvement, periods of relapse, and “crashes” where symptoms worsen with a devastating impact on quality of life. Our understanding of Long Covid symptoms is still evolving and more research is needed to further define this condition.
Here’s a chart of the most common symptoms of Cold, Flu, Acute COVID-19, Long Term COVID-19, and ME/CFS.
How can I participate in research about Long Covid and ME/CFS?
The You + ME Registry + Biobank is a collection of patient-reported data and biological samples (e.g. blood) from people living with ME/CFS, people with Long Covid, and healthy volunteers. Our large, rich dataset is used by researchers searching for treatments and a cure. Help uncover causes and identify treatments for ME/CFS, Long Covid, and other post-viral illnesses.
Visit the Long COVID Alliance for a list of studies, clinical trials, and research opportunities.
Where can I find additional resources about Long Covid?
Check out this COVID-19 and ME/CFS Webinar playlist: https://www.youtube.com/playlist?list=PLbO5abv0daLXu0TZwgSPKgxDgO5IPQGgB
From the Experts:
- What does COVID-19 portend for ME/CFS? (PDF) – Dr. Mady Hornig, Associate Professor of Epidemiology, Columbia University Medical Center
- We know too little about Covid-19 ‘long-haulers.’ We need a comprehensive study (Op-ed) – Dr. Anthony Komaroff, Harvard Medical School and Oved Amitay, Solve M.E.
- Will There Be a Post-COVID-19 Form of ME/CFS? – Dr. Anthony Komaroff, Harvard Medical School
- Coronavirus (COVID-19) & ME/CFS (Video) – Dr. Nancy Klimas, Institute for Neuro-Immune Medicine
- Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-A Systemic Review and Comparison of Clinical Presentation and Symptomatology – Timothy L Wong, Danielle J Weitzer
- Multi-Disciplinary Collaborative Consensus Guidance Statement on the Assessment and Treatment of Fatigue in Post-Acute Sequelae of SARS-CoV-2 infection (PASC) Patients – American Association of Physical Medicine and Rehabilitation (AAPM&R)