About ME/CFS
What is ME/CFS?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex illness that affects multiple systems of the body. People with ME/CFS experience profound exhaustion, sleep abnormalities, cognitive problems, orthostatic dysfunction, and pain. For a majority of cases, the onset of the illness is triggered by a viral infection like Epstein Barr (mononucleosis) or COVID-19. A smaller number of cases may be triggered by physical trauma such as concussion or other traumatic injury, or an environmental trauma like chemical exposure.
ME/CFS can range in severity from mild (only a small impact on daily activities) to moderate (symptoms become severe with exertion, unable to attend school regularly) to severe (housebound or bed-bound.) The illness may last many years, or decades. Symptoms may vary in severity and may wax and wane. Remission and recurrence is not uncommon.
How is ME/CFS diagnosed?
The current diagnostic criteria for ME/CFS are based on a 2015 report by the Institute of Medicine/National Academy of Medicine. These criteria require presence of the following common core symptoms:
- Impaired function due to exhaustion persisting for greater than 6 months
- Post-exertional malaise*
- Unrefreshing sleep*
- Cognitive impairment* or orthostatic intolerance
*Must be moderate to severe, and present more than 50% of the time
Post-exertional malaise
Post-exertional malaise (PEM) is the phenomenon of worsening symptoms following exertion or stress of any kind, including physical, cognitive, emotional, or orthostatic. The PEM “crash” can occur up to 24-48 hours following exertion, and may last days, weeks, or even months.
Unrefreshing sleep
Unrefreshing sleep is defined as non-restorative sleep, regardless of sleep duration, and can be associated with delayed sleep onset, frequent awakenings, increased light sleep, and decreased deep sleep.
Cognitive impairment
Cognitive impairment typically includes slowed information processing and manifests as problems with short term memory, concentration, and difficulty multi-tasking. Cognitive impairment worsens with continued physical, mental, emotional, and orthostatic exertion.
Orthostatic intolerance
Orthostatic Intolerance (OI) is a complex phenomenon that worsens with upright posture and improves with lying down. The symptoms associated with OI include lightheadedness, headache, fatigue, tremors, heart palpitations, exercise intolerance, nausea, sensitivity to heat, sleep abnormalities, and cognitive impairment. Although the mechanism of OI is not well understood, it is thought to involve impairment in the nervous system signals required to change blood vessel tone, heart rate, and contractility during shifts in position from lying to standing.
Clinical manifestations of OI include fainting, rapid heart rate, Orthostatic Hypotension (OH), Neurally Mediated Hypotension (NMH), and Postural Orthostatic Tachycardia Syndrome (POTS).
ME/CFS commonly causes many other symptoms that are not required for diagnosis, but may be severe and debilitating.
These include:
- Widespread muscle and joint pain, hyperalgesia, fibromyalgia, and various other pain syndromes
- Immune dysfunction, chronic inflammation, and environmental sensitivities
- Chronic or recurring infection (eg. bronchitis, sinusitis)
- Neuroendocrine dysregulation
- Neurologic problems including neuropathies, fine motor and concentration difficulties
How is ME/CFS treated?
Since there is no known cause or cure, treatment is targeted to relieve specific symptoms, such as pain and sleep disorder. Experienced ME/CFS clinicians are treating patients with both conventional and alternative approaches. Experimental treatments are being evaluated in clinical trials. Patients need to assess their treatment options carefully for safety and effectiveness.
ME/CFS is a complex, multi-symptom illness and may require a coordinated approach. Importantly, associated conditions can be treated, which may alleviate symptoms.
- A gastroenterologist may address stomach disturbance
- A neurologist can oversee headache and migraines
- Symptoms of orthostatic intolerance can be addressed by a cardiologist or a doctor specialized in autonomic function/POTS
- Alternatively, an Integrative or Functional Medicine doctor can oversee multiple aspects of the disease
Patient self-management is very important for quality of life. Important lifestyle changes include: increased rest, decreased and carefully paced activity (living in your ‘energy envelope’), exercise only as tolerated, stress control, balanced nutrition, improved sleep, and identifying effective coping strategies.
Patient and family support groups, as well as counseling, can be very helpful. It is vital to find a physician who understands ME/CFS, and is willing to develop an individualized treatment program.
Because some patients can show lower tolerance or hypersensitivity to medications, treatment should be started at low doses with gradual increases as appropriate. Since anesthesia can also trigger hypersensitive reactions, caution must be exercised when an ME/CFS patient undergoes a procedure using anesthesia. (See the suggestions of Dr. Charles Lapp concerning the use of anesthesia.)
What about kids?
Children develop ME/CFS, but they are often misdiagnosed. An accurate pediatric definition of ME/CFS has only been in existence since 2006.
Children tend to experience symptoms of short-term memory and concentration problems, dizziness, light-headedness, abdominal pain, rash, fever, and chills. They frequently experience profound fatigue as well, although they may have difficulty expressing their complaints or judging the severity of their condition.
Thus, some people may incorrectly perceive that the child is developing progressive learning and social difficulties rather than a physical illness. (Please see our Pediatric ME/CFS section for more information.)
Where to find more information:
U.S. ME/CFS Clinician Coalition
https://mecfscliniciancoalition.org/about-mecfs/
Bateman Horne Center Clinical Care Guide: Managing ME/CFS, Long COVID and IACCs
https://batemanhornecenter.org/clinical-care-guide/
U.S. Centers for Disease Control and Prevention on ME/CFS
https://www.cdc.gov/me-cfs/index.html
Institute for Medicine Report (2015): Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness