When to Talk to Your Provider About the Relationship between Long COVID and ME/CFS

By Bobbi Ausubel and Jessie Brown-Clark

Do you know anyone who has been ill with COVID-19, and still doesn’t feel well? While experts are still studying the novel coronavirus and its devastating effects, there is growing evidence that an estimated 25 – 35% of COVID-19 survivors will experience lingering symptoms.[1] The widespread nature of extended post-COVID-19 symptoms has led to the use of a new term, “long COVID-19.”

Some patients with this “new” condition may, in fact, 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 that are consistent with those reported by long COVID-19 patients. Several scholars are exploring the relationship between COVID-19 and ME/CFS, as much of what learn about long COVID could inform care for people with ME/CFS, and vice versa.[2]

ME/CFS is a debilitating, multi-system chronic disease. Key symptoms can include profound fatigue, cognitive impairment, sleep disorders, autonomic dysfunction (characterized by dizziness upon standing, among other symptoms), chronic pain, and symptoms that are often exacerbated by exertion. One of the hallmarks of ME/CFS is “post-exertional malaise” (PEM): the exacerbation of fatigue, discomfort, and other symptoms after a person exerts her or himself. With PEM, even normal activities or mild exertion results in deteriorating physical and mental stamina and worsening of other symptoms. PEM can sometimes occur immediately post-exertion, but is generally delayed for 24 or more hours.

In the U.S., between 836,000 and 2.5 million people suffer from ME/CFS. Research has shown that ME/CFS is about two to four times more likely to occur in women than men.[3] There are early indications that this trend will continue in long COVID, as well.[4] While the exact cause is unknown, up to 80 percent of ME/CFS cases begin with a viral infection.[5] History shows that when a severe infection like COVID-19 sweeps through the population, ME/CFS often follows.

If you have had COVID-19 and are experiencing symptoms of long COVID-19 or ME/CFS (including PEM), you can assess whether to talk to a provider using this checklist, which is based on criteria from the Institute of Medicine report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness:[6]

  • Are you experiencing profound fatigue that substantially decreases your ability to function?
  • Has this profound fatigue persisted for more than six months?
  • Do you experience post-exertional malaise after physical or mental exertion or normal daily activities?
  • Do you experience unrefreshing sleep (also called “non-restorative sleep”)? This occurs when you awaken but feel just as exhausted as when you went to bed, despite being in bed for an extended period of time.
  • Are you experiencing cognitive impairment? Examples include memory problems, attention deficits, or trouble with skills where thinking and movement are combined (such as balance or coordination).
  • Do your symptoms get worse when you are standing or sitting upright and improve when you are lying down?

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 providers remain unaware of the scope and true impact of the disease. There are a small number of ME/CFS specialists in the U.S., but many patients do their best to establish a good working relationship with a primary care provider and one or more specialists to manage their specific issues. You can help educate your provider by sharing the first page of the Centers for Disease Control and Prevention’s (CDC) website for providers about ME/CFS.[7]

When you are ready to make an appointment with a health care provider, these steps can help you start the conversation and make the most of your visit:

  • Focus on the most problematic symptoms first, specifically the experiences that are hindering your quality of life the most. Write down these symptoms and your questions and bring with you to the appointment as a guide for the conversation.
  • Give specific examples when describing your symptoms. Try to describe a specific type of activity that is impacted by your symptom and how often it happens. This will help your provider to understand the symptom and its significance in your life, and to identify potential treatments.
  • Ask questions. Be sure you understand the purpose and side effects of any recommended prescriptions or supplements, in particular.
  • Take notes during the appointment. It’s is very easy to forget the information and advice, so you may want to bring someone with you to help take notes.
  • If you feel that your concerns are not being addressed or that the provider is dismissive of your symptoms, remember that you are your own best advocate for your health. Never be afraid to find a new provider if you don’t feel that you are being listened to. We know that women, particularly women of color, often face difficulty getting providers to take their symptoms seriously, so this is an extremely important point.  

While the Food and Drug Administration has not approved any treatments for ME/CFS, there is hope. The degree to which your life is impacted by ME/CFS depends on a number of things, including the severity of your disease. Individuals with ME/CFS learn over time what works best for them and many rely on the robust community of patients and advocates that share resources, information, and support.

Some useful resources are:

Bobbi Ausubel is a longtime advocate for ME and currently facilitating ‘Writing From Our ME Lives,’ a writing group for people with ME. Jessie Brown-Clark, the Engagement Coordinator at the Solve ME/CFS Initiative (Solve M.E.) is passionate about working with ME/CFS advocates to make this disease widely understood, diagnosable, and treatable.

[1] Retrieved from American Medical Association: https://www.ama-assn.org/delivering-care/public-health/dr-fauci-offers-2021-forecast-covid-19-vaccines-treatments

[2] Komaroff AL, Bateman L, Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Front. Med., January 18 2021. doi.org/10.3389/fmed.2020.606824.

[3] Institute of Medicine. (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Washington, DC: The National Academies Press. Retrieved from https://doi.org/10.17226/19012.

[4] Davis HE, Assaf GS, McCorkell L, et al., “Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact,” medRxiv. December 24, 2020. doi.org/10.1101/2020.12.24.20248802.

[5] Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Washington (DC): National Academies Press, 2015. doi.org/10.17226/19012

[6] Solve M.E., Do I Have ME/CFS? Quiz, 2015. Online: www.solveME.org: https://solvecfs.org/do-i-have-mecfs-quiz/.

[7] Centers for Disease Control and Prevention (CDC), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Information for Healthcare Providers, Atlanta (GA): CDC, 2020. Online: www.cdc.gov/me-cfs/healthcare-providers/index.html.