Resources for Medical Providers

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and is often triggered by an infection. The main symptoms are extreme exhaustion (exacerbated by activity), cognitive dysfunction and unrefreshing sleep. Other symptoms may vary.

Long Covid describes a collection of lingering symptoms devastating the lives of many infected by COVID-19. Long Covid affects an estimated 10-30% of people infected with COVID-19, including those who were asymptomatic. The most frequent prolonged symptoms are persistent fatigue, brain fog, and depleted energy after even a minimal effort.

Because post-infection diseases are not yet fully understood, there is no cure for ME/CFS or Long Covid, nor are there any FDA-approved drugs or treatments. However, there are interventions and symptom-reduction strategies that you can use to significantly improve patients’ quality of life. Providing compassionate and effective care for patients with ME/CFS and Long Covid can be challenging, like many other multisystemic chronic conditions. Patients and their providers must be partners with open lines of communication in order to effectively manage this illness. Below you will find education based on current research:

Diagnosis and Management: ME/CFS

Center of Disease Control: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

The CDC has created a toolkit for healthcare providers to assist with assessing and managing symptoms, and providing other supportive strategies:

Mayo Clinic Proceedings: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

ME Association Booklet: Diagnosis of ME/CFS – Importance of Early & Accurate Diagnosis

The US ME/CFS Clinician Coalition produced updated clinical guidance for ME/CFS, published in the Mayo Clinic Proceedings. In this article, you will find:

  • Diagnostic criteria
  • Guidance on the efficient use of interview questions, physical examination findings, and diagnostic testing
  • Alternative diagnoses and co-existing conditions to consider 
  • Pharmacological and nonpharmacological treatments
  • A discussion of why previously-recommended treatments — cognitive behavioral therapy and graded exercise therapy — can be harmful and are no longer recommended

 

The ME/CFS Clinician Coalition also has excellent clinical management resources available.

Institute of Medicine: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

In 2015, the National Academy of Medicine (NAM) — formerly called the Institute of Medicine (IOM) — published a report summarizing the evidence base and redefining the diagnostic criteria. Key findings of the report included:

  • It is estimated that between 5 – 9 million Americans suffer from ME/CFS
  • ME/CFS is not psychiatric or psychological in nature
  • ME/CFS is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion
  • Many people with ME/CFS report difficulty completing everyday tasks, and at least one quarter have been home- or bed-bound at some point as a result of their illness
  • The total economic costs of ME/CFS are estimated at $17 to $24 billion annually
  • ME/CFS can severely impair patients’ ability to conduct their normal lives

Diagnosis and Management: Long Covid

Centers of Disease Control: Evaluating and Caring for Patients with Post-COVID Conditions: Interim Guidance

The CDC has published interim guidance for “Post-COVID Conditions,” an umbrella term for the wide range of symptoms experienced by some patients that are present four or more weeks after SARS-CoV-2 infection.

American Academy of Physical Medicine and Rehabilitation: Multidisciplinary Quality Improvement Guidance

AAPM&R’s Multidisciplinary PASC Collaborative published a series of consensus based guidance articles:

Covid-19 Longhauler Advocacy Project (C-19LAP): A Comprehensive Guide for COVID-19 Longhaulers and Physicians

C-19LAP created this “Master Document” as a guide to help Longhaulers and their physicians work as a team in an attempt to get the patient back to good health and regain quality of life.

Journal of Orthopaedic & Sports Physical Therapy: Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Resources and Guidance for Coding

More Information

Doctors with ME: Doctors with M.E. is the global professional association for medical practitioners and scientists in the field, bringing together leading experts, regional associations and the quarter of a million healthcare professionals with ME. Check out their resources, “Putting it into Practice: What NICE ME/CFS means for GPs” & ME/CFS: What Psychiatrists Need to Know

ME/CFS: Causes, Clinical Features and Diagnosis (Medicina)

Chronic Fatigue Syndrome: What Nurses Need to Know, Marianne Bush, BS, RN

Health Care Responsibility and Compassion-Visiting the Housebound Patient Severely Affected by ME/CFS, Caroline Kingdon

Sample ME/CFS Disability Report, NeuroCognitive Research Institute: This is a quantitative case study of an ME/CFS patient

Learn more about current ME/CFS and Long Covid research through the Solve M.E. Webinar Series, and sign up for our newsletter. You can also find a list of experts and thought leaders here. If you have any questions or need additional information, please contact us.

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