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, like Long Covid, is often triggered by an infection. The main symptoms are extreme exhaustion (exacerbated by activity), cognitive dysfunction and unrefreshing sleep. Other symptoms may vary.
Because it is not yet fully understood, there is no cure for ME/CFS, 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 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 on ME/CFS based on current research:
Diagnosis and Management
The CDC has created a toolkit for healthcare providers to assist with assessing and managing symptoms, and providing other supportive strategies:
- ME/CFS Assessment Overview Table
- What is ME/CFS?
- What are ME/CFS symptoms?
- Managing Specific Symptoms
- Managing Post-exertional Malaise (PEM)
- Other Supportive Strategies
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.
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:
- Between 836,000 and 2.5 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
Continuing Medical Education (CME)
Medscape + CDC Online Courses:
- ME/CFS: A Case-Based Learning Module
- ME/CFS: Test Your Strengths and Gaps in Knowledge
- Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experts Weigh In
Michigan State Medical Society:
- Update on Chronic Fatigue Syndrome Part 1: Clinical Diagnostic Criteria for Chronic Fatigue Syndrome/CFS now called Myalgic Encephalomyelitis or ME/CFS
- Update on Chronic Fatigue Syndrome Part 2: Uniting Compassion, Attention and Innovation to treat ME/CFS
Workwell Foundation + MedBridge courses for physical, occupational and speech therapists as well as nurses and other health care providers:
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.
Chronic Fatigue Syndrome: What Nurses Need to Know, Marianne Bush, BS, RN
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 Research through the Solve M.E. Webinar Series, and sign up for our newsletter. You can also find a list of ME/CFS experts and thought leaders here. If you have any questions or need additional information, please contact us.