Info for Healthcare Providers

Long Covid is also known as Post-COVID syndrome, Long Haulers, Long-term COVID-19, Post-Acute COVID Syndrome (PACS) or LTC-19.

These terms describe a collection of lingering symptoms:

• Cough
• Shortness of breath / Difficulty breathing
• Fatigue (tiredness) or Disabling Fatigue (PEM, PENE)
• Muscle/joint pain, body aches, or chest pain
• Headache
• 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.

Additional Resources:

Centers for Disease Control (CDC) Webinar: Treating Long COVID: Clinician Experience with Post-Acute COVID-19 Care (PDF)

“Given the similarity in symptoms and the preceding infectious illness, we recommend that you consider a diagnosis of post-viral fatigue syndrome or ME/CFS (ICD-10 93.3) in the differential diagnosis of those patients who remain ill for an extended time following a COVID-19 infection and meet established ME/CFS criteria.”

— The US ME/CFS Clinician Coalition, October 2020

• Managing COVID-19 Post Viral Fatigue Syndrome – Dr. Charles W. Lapp of the Hunter Hopkins Center and Dr. Joseph F. John of Low Country Infectious Diseases and the Ralph H. Johnson Veterans Administration Medical Center
• Special Editorial: Long-Haul COVID (PDF or Website) – By Dr.  Avindra Nath, Clinical Director at the Division of Intramural Research at the National Institutes of Health (NIH) published August 2020 in Neurology.
• COVID-19 and ME/CFS/FM Frequently Asked Questions (PDF) – Dr. Cindy Bateman and Dr. Brayden Yellman of the Bateman-Horne Center answer specific questions about COVID-19 as it relates to ME/CFS/FM.
• Coronavirus (COVID-19) & ME/CFS (Telebriefing -14 mins) – Dr. Nancy Klimas of the Institute for Neuro-Immune Medicine at Nova Southeastern University Hospital

Graded Exercise Therapy (GET) Can Cause Harm!

“ME/CFS patients have also reported harms from graded exercise therapy … exercise can trigger the systemic intolerance to exertion characteristic of ME/CFS and worsen the patient’s condition.”

— The US ME/CFS Clinician Coalition, October 2020

Many studies and reports from people with ME/CFS show that exercise or intense physical exertion at the early stages of illness leads to significantly worse long-term health outcomes and potential disability.  Before considering any recommendations for increased activity level, it is vital that ME/CFS is ruled out as a potential diagnosis to avoid further deteriorating the patient’s health and capacity. Click here for #MEAction’s guide to PACING and activity management.

The Bateman Horne Center has created a fast fact sheet for treating COVID-19 in patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and severe Fibromyalgia (FM). Their recommendations include:

• Presume the patient is orthostatic and treat as if in “shock” (abnormal perfusion and circulatory failure)
• Reduce sensory stimuli [sensory stress] as much as possible
• Assume cognitive impairment [cognitive slowing] is present
• Use medications thoughtfully and skillfully with close monitoring

US ME/CFS: Clinician Coalition Website:

The U.S. ME/CFS Clinician Coalition is committed to improving clinical care for patients with ME/CFS by advancing best clinical practices, providing education for the medical community, expanding the pool of medical providers with strong expertise in ME/CFS, and providing clinical insights for researchers.

• Diagnosis and Management
• Diagnosing Key Comorbidities
• Special Considerations

Standard of Care for ME/CFS:

There is currently no FDA approved treatment for ME/CFS. However, here are a number of medications and strategies that may help reduce symptoms. The Bateman Horne Center’s treatment advice includes:

• Building emotional resilience
• Achieving the most restorative sleep possible
• Achieving reasonable pain control
• Balancing physical pacing with physical conditioning
• Identifying and treat comorbid conditions

An important strategy for patients to learn is how to manage their activities to avoid triggering post-exertional malaise (PEM).

Where can I receive CME credits for ME/CFS?

• A Fresh Look at Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Diagnosis and Management of a Multisystem Illness (Free) Provided by Medscape featuring Benjamin Natelson, MD; Donna Felsenstein, MD; Mitchell Miglis, MD; Dale Strasser, MD 
• Post-Viral Syndrome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): What Every Clinician Needs to Know (Free) Provided by New York State Department of Health AIDS Institute featuring Dr. David Kaufman
• DIAGNOSING MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME: THE EXPERTS WEIGH IN (Free) Provided by Medscape CME featuring Drs. Lucinda Bateman, Natalie Azar, Nancy Klimas, and José Montoya
• MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME: TEST YOUR STRENGTHS AND GAPS IN KNOWLEDGE (free) Provided by Medscape featuring Dr. Nancy Klimas
• MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME: A CASE-BASED LEARNING MODULE (free) Provided by Medscape featuring Dr. Stephen Gluckman
• MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME: SCHOOL NURSES CAN IMPROVE OUTCOMES (free) Provided by National Association of School Nurses featuring Dr. Kenneth Friedman, Beth Mattey, MSN, RN, NCSN, FNASN, and Faith Newton, EdD.
• ME/CFS FOR PHYSICAL THERAPISTS: INTRODUCTION, IDENTIFICATION, ETIOLOGY, AND MANAGEMENT (Part 1 and Part 2 – $100 ea) Provided by Medbridge featuring Drs. Todd Davenport, Mark VanNess, and Ms. Staci Stevens