Info for Healthcare ProvidersDecember 8, 2020
It can be a challenge to compassionately and effectively care for patients with complex, multi-system illnesses, especially during a pandemic. It’s not surprising that many medical professionals are struggling to diagnose and treat an exploding number of patients exhibiting a wide variety of post-viral complications.
Since most medical textbooks and curriculums don’t include information about ME/CFS, it’s understandable when medical professionals and health care providers need more answers about this complex illness. Thank you for visiting this page and going the extra mile for your patients!
The following resources aim to empower you with the latest information and updates from ME/CFS experts around the country.
What is Long COVID? What are the symptoms?
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:
- 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 are ME/CFS experts saying about treatment of Long COVID? What can cause harm?
“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
- 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) – Cindy Bateman and 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) – Nancy Klimas of the Institute for Neuro-Immune Medicine at Nova Southeastern University hos
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.
- Blunted heart rate and implications for pacing in ME/CFS (blog) Carolyn Elizabeth explains Chronotropic incompetence (CI), ME/CFS, the potential harms of exercise, and PACING treatments
- Pacing and Management Guide for ME/CFS (PDF) #MEAction printable guide to PACING and activity management
- For People With Chronic Fatigue Syndrome, More Exercise Isn’t Better (NPR) A segment from NPR’s “Morning Edition” and accompanying article by Michaeleen Doucleff address the harm caused by exercise treatment recommendations
How is ME/CFS diagnosed?
The U.S. ME/CFS Clinician Coalition, a group of US ME/CFS experts, has authored this handout on the basics of diagnosis and management of ME/CFS to help the medical community better understand how to recognize ME/CFS and how to appropriately care for patients.
Key Considerations in Diagnosing ME/CFS:
The onset of ME/CFS is often sudden. About 80% of ME/CFS patients report that an infectious-like syndrome or infectious disease (such as infectious mononucleosis, COVID-19, or flu-like illness) preceded the onset of their disease. Diagnosis requires recognition of the following core symptoms:
- Substantial reduction or impairment in the ability to engage in pre-illness activity that persists for 6 months or more and is accompanied by fatigue. The fatigue is profound, not lifelong, not the result of ongoing exertion, and not alleviated by rest.
- Post-exertional malaise (PEM) in which physical or mental activities result in a typically delayed and prolonged exacerbation of symptoms and reduction in functioning (see details below).
- Unrefreshing sleep and a variety of sleep disturbances.
- Either cognitive impairment (often referred to as “brain fog” by patients) and/or orthostatic intolerance (the development of symptoms when upright that are alleviated when lying down).
ME/CFS is a serious, chronic, and systemic disease that frequently and dramatically limits the activities of affected patients. A thorough history, physical examination, and targeted workup are necessary to determine a differential diagnosis and are often sufficient for diagnosis of ME/CFS. It is essential that clinicians assess the severity and duration of symptoms over the past month or more. Chronic, frequent, and moderate or severe symptoms are required to distinguish ME/CFS from other illnesses.
Comorbidities such as fibromyalgia and irritable bowel syndrome are common in ME/CFS patients. These comorbidities should be diagnosed and treated when caring for patients. The presence of other illnesses should not preclude patients from receiving a diagnosis of ME/CFS (SEID) except in the unlikely event that all symptoms can be accounted for by these other illnesses.
The Hallmark Symtpom — POST-EXERTIONAL MALAISE (PEM):
From the U.S. ME/CFS Clinician’s Coalition:
Patients experiencing PEM will often describe a “crash,” “relapse,” or “collapse” after even small amounts of mental or physical exertion that was previously tolerated. During the crash, which may be immediate but more often delayed by hours or days, patients can experience an exacerbation of one or all of their symptoms and a further reduction in functioning. It can take hours, days, a week or even longer to return to their previous baseline after a crash. Some patients may go through cycles of overexerting and crashing while others may have learned to reduce or change activities to minimize crashes. For some patients, even basic activities of daily living can result in PEM.
The following questions may help identify whether a patient experiences PEM:
- What happens when you engage in normal (previously tolerated) physical or mental exertion?
- How much activity does it take to make you feel ill or to trigger illness worsening?
- How long does it take to recover from this physical or mental effort?
- Do you avoid or change certain activities because of what happens after you do them?
It may help patients and clinicians to identify PEM if patients keep a daily diary of their symptoms and activities for two weeks.
How do I provide care for an ME/CFS patient who has COVID-19?
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.
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?
- 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
- UPDATE ON CHRONIC FATIGUE SYNDROME: CLINICAL DIAGNOSTIC CRITERIA AND UNITING COMPASSION, ATTENTION AND INNOVATION TO TREAT ME/CFS (Part 1 and Part 2 – Free) Provided by Michigan State Medical Society featuring Dr. Lucinda Bateman
- UNREST, A FILM ABOUT ME/CFS WITH A TUTORIAL ON DIAGNOSIS AND MANAGEMENT OF ME/CFS (free) Provided by American Medical Women’s Association and Indian University School of Medicine featuring film by Jen Brea and tutorial by Dr. David Kaufman
- 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
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