Long Term COVID-19December 7, 2020
While experts are still studying coronavirus and its devastating effects, there is growing evidence that an estimated 25 – 35%* of COVID-19 survivors will experience lingering symptoms. The unique experience and widespread nature of post COVID-19 symptoms led to a new term, Long COVID. People experiencing Long COVID are sometimes called “Long Haulers.”
Some patients with this “new” condition may be experiencing a disease that is already recognized, but not widely understood: Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). ME/CFS is one of several post-viral conditions with symptoms consistent with those reported by Long COVID patients.
* Strazewski, Len. Dr. Fauci Offers 2021 Forecast on COVID-19 Vaccines, Treatments, American Medical Association, 9 Nov. 2020, www.ama-assn.org/delivering-care/public-health/dr-fauci-offers-2021-forecast-covid-19-vaccines-treatments.
Have you had COVID-19?
What is Long COVID? What are the symptoms?
Long COVID is also known as Post-COVID syndrome, Long Haulers, Long-term COVID-19, or LTC-19.
These terms describe a collection of lingering symptoms devastating the lives of many COVID-19 survivors. These symptoms persist in an estimated 25 – 35% 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.
According to the CDC and other experts, Long COVID symptoms include:
- Intermittent fever
- Shortness of breath / Difficulty breathing
- Fatigue (tiredness) or Disabling Fatigue (PEM, PENE)
- Muscle/joint pain, body aches, or chest pain
- 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
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.
What is ME/CFS?
Myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS), is a complex and debilitating multi-system, chronic disease often associated with viral infections. While “ME/CFS” is the preferred name by many, this disease has also been called systemic exertion intolerance disorder (SEID), chronic fatigue immune deficiency syndrome (CFIDS), or post-viral fatigue syndrome (PVFS).
“Post-exertional malaise” (PEM) is a hallmark of ME/CFS. PEM is the worsening of symptoms, fatigue, and discomfort following exertion. PEM occurs when even mild exertion or normal activity results in the loss of physical and mental stamina, as well as the worsening of other symptoms after exertion. Post-exertional malaise can sometimes occur immediately but is generally delayed for 24 or more hours following exertion.
A report found between 836,000 and 2.5 million people in the United States suffer from ME/CFS, and up to 80 percent of cases of ME/CFS are initiated by an infection, such as COVID-19. 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.
Can COVID-19 cause ME/CFS?
Potentially, yes. There is emerging evidence that between 25 – 35% individuals who contracted COVID-19 are suffering with persistent symptoms that are “highly suggestive” of ME/CFS. There are also reports of individuals receiving a ME/CFS diagnosis as a result of a COVID-19 infection.
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%-90%.α
Because these viral outbreaks involved fewer total numbers, fewer longitudinal investigations were launched. However, thousands of people with COVID-19 are reporting extended symptoms consistent with post-viral onset of ME/CFS and these reports are being published in media outlets across the country.
“There is no question that there are a considerable number of individuals who have a post-viral syndrome… people who’ve recovered who do not get back to normal. They have things that are highly suggestive of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. This is something we really need to seriously look at because it very well might be a post-viral syndrome associated with COVID-19.”
— Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases, July, 2020
α Hornig MA, MD, Mady. “What does COVID-19 portend for ME/CFS?” Solve ME/CFS Initiative April 17, 2020. https://solvecfs.org/wp-content/uploads/2020/04/COVID19-MECFS_Sci_Review.pdf
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 to quality of life. Long Term COVID-19 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.
What should I do if I think I have ME/CFS from COVID-19?
While there are still many open questions, the ME/CFS community is here for you as a resource- ready to share its experience.
“Stop what you are trying to do and listen to your body as it tells you it needs to be quiet now. You will not ‘fight’ your way out of this. It is not a test of your character or your will. You need to stop and listen to the only body you will ever have.”
*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
If you think that you may have ME/CFS, Solve M.E. strongly encourages you to adopt PACING at a level that fits your current health and energy capacity. You should continue PACING until you can formulate a treatment plan with your healthcare team. Your long-term treatment plan may also include PACING. Below are some helpful resources to help you find a PACING strategy to meet your needs.
- Management and Treatment Of ME/CFS (webpage) – Solve M.E. resource page with guidance and worksheet on pacing to prevent PEM
- How to Manage Post-Viral Fatigue after COVID (PDF download) – 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 – 16 mins) – 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:
If you have been experiencing Long COVID symptoms, Post-Exertional Malaise (PEM), or other symptoms of ME/CFS after becoming sick from COVID-19, you can check your experience with this Five Question Quiz based on criteria from the 2015 Institute of Medicine (National Academy of Medicine) report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.
While this quiz is not a diagnosis, if you answered “yes” to these questions, it may be time to make an appointment with your healthcare provider.
**Note: In adults, symptoms must be present for six months or longer for an ME/CFS diagnosis. In children, symptoms must be present for three months or longer. **
Finding a doctor who is knowledgeable about ME/CFS can be challenging. While educational resources for medical practitioners have improved significantly in recent years, many physicians remain unaware of the scope and true impact of the disease. There are a small number of ME/CFS specialists in the United States, but many patients do their best to establish a good working relationship with a primary care physician and one or more specialists to manage specific issues.
When you are ready to make an appointment with your physician, meet with a specialist, or find a new doctor, these steps can help you start the conversation:
- ME/CFS experts generally suggest that patients focus on their most problematic symptoms first. Think of the experiences that are most hindering your quality of life. Write down these symptoms and your questions to bring with you as a guide.
- Give specific examples when describing your symptoms. Try to describe a specific type of activity that is impacted by your symptom (“I’m so tired I cannot pick up a laundry basket”) and a specific frequency (“I am unable to climb a flight of stairs without feeling faint about 3 days a week”). This will help your doctor understand the symptom, its significance in your life, and identify potential treatments.
- Don’t hesitate to ask questions. Be sure you understand the purpose and side effects of any prescriptions or supplements that have been recommended.
- Take notes during the appointment, because it is very easy to forget the information and advice. You may want to have someone come with you to help take notes, especially if you are having cognitive symptoms or memory issues.
- If you are seeing someone who doesn’t know much about the disease, consider printing and sharing the first page of the CDC’s web page titled “Information for Healthcare Providers” on ME/CFS. The U.S. ME/CFS Clinician Coalition is another excellent resource to share with your healthcare provider.
- If you feel that your concerns are not being addressed or that your doctor is dismissive of your symptoms, know that you are your own best advocate for your health. There are resources available to help empower you in the doctor’s office, and don’t be afraid to seek a second opinion.
Post COVID Care Centers (PCCC) and ME/CFS Experts:
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.
- ME/CFS Experts in the United States (webpage) – Solve M.E. list of ME/CFS clinical care experts
- Visit Survivor Corps Directory of Post COVID Care Centers (PCCCs) to find a center near you.
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 – 55 mins) – 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
- (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 & 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 (Private 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 (Private 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 (Private Facebook group) – for long-COVID patients to connect with experienced ME/CFS patients.
- Survivor Corps (Public Facebook group) – Survivor Corps is a not for profit, grassroots movement educating and mobilizing COVID-19 survivors and connecting them with the medical, scientific and academic research community, to help stem the tide of this pandemic and assist in the national recovery. Info at www.SurvivorCorps.com
How can I participate in research about Long COVID and ME/CFS
You + ME Registry to Study COVID-19
To better understand Long COVID and ME/CFS, we are using the You + ME Registry and Biobank to collect data and biological samples from individuals with and without persistent symptoms. We will also compare these data to information from people with Myalgic Encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), to characterize similarities and differences between the two groups.
Global Long COVID Data Coalition
Solve M.E. has adopted a collaborative approach to understand Long COVID and have begun work to establish the first Global Long COVID Data Coalition. We are establishing partnerships with others who are collecting data on individuals who’ve had COVID-19, centered around the concept of data harmonization. By capturing similar information on these individuals, we can later collate our data and amass enough information to see a clearer picture of the causes of these long-term effects. We are also offering our registry infrastructure and access to our symptom tracking app to anyone who is interested in using it as a mechanism to easily collect longitudinal data.
The pandemic offers an opportunity to understand susceptibility or resilience to these long-term effects, and we may well also shed light on ME/CFS and post-infectious fatigue syndromes following infections other than COVID-19.
If you are interested in joining our Global Long COVID Data Coalition, email Allison Ramiller at email@example.com
Survivor Corps Research Study Lists
Survivor Corps, the Peace Corps of the COVID Generation, is a grassroots solution-based movement to mobilize the sharply increasing number of people affected by COVID-19 to come together, support and participate in the medical and scientific research community efforts and take a more active role in trying to mitigate this pandemic. Check out their study lists below to learn more.
- National Research Studies & Trials (open to people in multiple states)
- State Plasma Studies & Medical Research Trials (alphabetically by State)
Blood and Plasma Donation Search Engines
- AABB Blood Donation Site Locator (be sure to use the convalescent plasma filter for COVID-19 related donations)
- CoVIg-19 Plasma Alliance, plasma donations relating to Immunoglobulin (Ig) Therapy
- The Fight Is In US, a national COVID survivor plasma donor recruitment campaign which may include free, roundtrip Uber rides to donation centers for eligible donors
Where can I find additional resources about ME/CFS and COVID-19?
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
In the News:
- Hundreds of ‘Long Haulers’ Present with Neurologic Complaints at Post-COVID-19 Clinics by Dan Hurley (NeurologyToday)
- Fibromyalgia and Chronic Fatigue Syndrome in the Age of COVID-19 by Dr Arya Mohabbat et al. (Mayo Clinic Proceedings: Innovations, Quality & Outcomes)
- Some of the youngest Covid patients face uncertain futures as they struggle with long-term impacts by Megan Leonhardt (CNBC)
- Long Covid: overlap emerges with ME – including debate over treatment by Linda Geddes (The Guardian)
- The COVID long-haulers: When the body gets better, but the brain does not by Clifton Gooch (Tampa Bay Times)
- Proposed British guidelines reject useless chronic fatigue syndrome treatments by David Tuller and Steven Lubet (STAT News)
- COVID-19 and Post-Viral Fatigue Syndrome by Dr. Charles Shepherd (The ME Association)
- Covid Lockdown Opening Up World for People with Disabilities by Frances Ryan (The Guardian)
- ME/CFS Research During the Time of the Coronavirus: Shutdowns and Opportunities by Cort Johnson (Health Rising)
- Chronic Uncertainty: Lessons for a Global Pandemic from a Permanently Sick Person by Esmé Weijun Wang (The Cut)
- The Disabled Person’s Guide to Getting Stimulus Checks (How to Get On)
- Fear and Social Distancing In Quarantine by Jamison Hill (Jamison Writes)
- They’re Living with an Invisible Illness. Social Distancing Will Save Their Lives by Christina Zdanowicz (CNN)
- Safety in Isolation by Jenny Spotila (Occupy M.E.)
- Dark Sun: Reflections on the Coronavirus as it Heads For Town” by Cort Johnson (Health Rising)
- Coronavirus Pt. II: Scary Models, 8 Reasons People with ME/CFS and Fibromyalgia Should Be Careful, How to Stop an Epidemic, Why You Should Trust No One and More by Cort Johnson (Health Rising)
- Coronavirus Pt. III: Is the U.S. Becoming Italy?, A Singapore Success Story, More Scary Models, Remdesivir to the Rescue? by Cort Johnson (Health Rising)
- A New Virus and ME by Jenny Spotila (Occupy M.E.)
- The Reaction to Coronavirus is Making Some Chronically Ill People Angry, and I’m One of Them by Kelly Wynne (Newsweek)
Additional Information for