While there are no definitive diagnostic tests or FDA approved treatments specific to ME/CFS, there are no shortage of interventions a clinician can make to improve patient quality of life and significantly reduce the overall symptomatic burden of ME/CFS.
The following resources may assist with diagnosis of ME/CFS and provide guidance toward clinical management for those suffering from this illness.
Additional information is available on the Resources page
GETTING STARTED WITH THE BASICS
Medical providers can use the basic information on diagnosis and management in these resources to care for people with ME/CFS. Diagnosis involves positively identifying the key features of ME/CFS while also identifying alternative diagnoses that could fully explain the symptoms along with any comorbidities that are also present. Management starts with validating the patient’s experience and includes teaching them about pacing to minimize postexertional malaise, treating their symptoms and comorbidities, and helping them access needed support.
GUIDANCE ON DIAGNOSIS AND MANAGEMENT
The following resources provide more in-depth information about ME/CFS and its diagnosis and management in both adults and children. The first two resources are consensus recommendations from the ME/CFS Clinician Coalition on testing and treatment approaches. Other resources include adult and pediatric clinical primers authored by ME/CFS clinical experts from around the world and guidance for psychiatrists.
ME/CFS and Long COVID
In October 2020, the ME/CFS Clinician Coalition published a letter recognizing the development of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in patients with Post-COVID Conditions, also known as Long COVID. Since then, the intersection of ME/CFS and Long COVID has become even clearer. This highlights the need for clinicians to consider a diagnosis of ME/CFS in those with Long COVID, particularly when post-exertional malaise (PEM) is present. Early diagnosis and management of PEM and ME/CFS in these patients can help reduce patient suffering and improve quality of life.
DIAGNOSING AND MANAGING KEY COMORBIDITIES
Patients with ME/CFS may experience a number of comorbidities. Treating these will not cure ME/CFS but can help decrease the symptom burden. The 2020 ME/CFS Clinician Coalition Handout on the Basics of Diagnosis and Treatment (referenced above) contains a list of the common comorbidities. The following resources provide clinical information on diagnosing and managing some of the key comorbidities seen in ME/CFS.
People with ME/CFS who are severely ill, are pregnant, require emergency room services for acute illnesses, or who need to undergo surgery require special medical considerations. The 2014 IACFS/ME Primer, the 2012 ME-ICC Primer, and the 2017 Pediatric Primer contain general information on these topics. Additional information can be found in the following resources:
HELPING PATIENTS ACCESS DISABILITY AND ACCOMMODATIONS
People with ME/CFS often benefit from various support services, devices, and accommodations. Among these interventions are mobility and positional support devices, school accommodations, work accommodations, home health aids, and even disability resources or support. The following resources provide additional information on these topics:
Disability and School Accommodations
Accommodations for Work
(US Job Accommodation Network Recommendations)
Please visit our Resources Page for additional references.