More about ME/CFS

Diagnosing ME/CFS

These symptoms are required for a clinical diagnosis of ME/CFS:

1. a substantial reduction in daily functioning including profound fatigue,
2. post-exertional malaise,
3. unrefreshing and disordered sleep,
4. and either cognitive impairment or orthostatic intolerance.

Additional symptoms which often occur are: flu-like symptoms, sensory sensitivity, pain, recurrent headaches, and gastrointestinal disturbances.

The description below from the Institute of Medicine (IOM) report is more complete and informative for people who are not familiar with medical terms:

Three symptoms and at least one of two additional symptoms are required for diagnosis. The three required symptoms are:

1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activity (occupational, educational, social or personal life) that

• lasts for more than 6 months
• is accompanied by fatigue that is:
• often profound 
• of new onset (not life-long)
• not the result of ongoing or unusual excessive exertion
• not substantially alleviated by rest

2. Post-exertional malaise (PEM)* – worsening of symptoms after physical, mental or emotional exertion that would not have caused a problem before the illness. PEM often puts the patient in relapse that may last days, weeks, or even longer. For some patients, sensory overload (light and sound) can induce PEM. The symptoms typically get worse 12 to 48 hours after the activity or exposure and can last for days or even weeks.

3. Unrefreshing sleep* – patients with ME/CFS may not feel better or less tired even after a full night of sleep despite the absence of specific objective sleep alterations.

And at least one of the following two must also be present:

1. Cognitive impairment* – patients have problems with thinking, memory, executive function, and information processing, as well as attention deficit and impaired psychomotor functions. All can be exacerbated by exertion, effort, prolonged upright posture, stress, or time pressure, and may have serious consequences on a patient’s ability to maintain a job or attend school full time.

2. Orthostatic intolerance – patients develop a worsening of symptoms upon assuming and maintaining upright posture as measured by objective heart rate and blood pressure abnormalities during standing, bedside orthostatic vital signs, or head-up tilt testing. Orthostatic symptoms including lightheadedness, fainting, increased fatigue, cognitive worsening, headaches, or nausea are worsened with quiet upright posture (either standing or sitting) during day-to-day life, and are improved (though not necessarily fully resolved) with lying down. Orthostatic intolerance is often the most bothersome manifestation of ME/CFS among adolescents.

*The frequency and severity of these symptoms need to be evaluated. The IOM committee specified that “The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.”

Other causes for these symptoms should be ruled out.

Diagnosis should also include a workup to see if there are other causes for symptoms which might be treatable.

Where to find more information:
U.S. ME/CFS Clinician Coalition
https://mecfscliniciancoalition.org/about-mecfs/

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
https://www.cdc.gov/me-cfs/index.html

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (2015)
https://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness

Treating and Managing ME/CFS (The Basics)

Here are the main points about treating and managing ME/CFS from a group of expert ME/CFS clinicians. If you have lingering symptoms after COVID-19 infection, and some of your symptoms seem similar to ME/CFS, this information might be useful to you and your doctor.

This is an important point these expert clinicians want all doctors to understand:

“In the past, ME/CFS has been characterized as a syndrome of medically unexplained fatigue responsive to talk therapy and graded exercise. But scientific advances are revealing a complex, multisystem disease involving neurological, immunological, autonomic, and energy metabolism impairments. There is a critical need for a different approach to management of the disease and accompanying comorbidities.”

Here is how these expert ME/CFS clinicians suggest doctors should treat ME/CFS:

1. Validate the patient experience and educate about the disease.
The most important thing that a medical provider can do is to validate the illness for the patient and the patient’s family. Explain that ME/CFS is a serious medical illness and is not laziness, depression, or a psychosomatic disorder.

2. Address impaired function and provide support as needed.
By definition, patients with ME/CFS have significant disability. Patients may need help in obtaining accommodations for school and work or when applying for disability. They may also need parking permits, assistive devices, and/or home health aides.

3. Educate patients about pacing to prevent or minimize PEM.
Pacing is an individualized approach to managing physical, cognitive, and emotional energy within a patient’s specific limits by carefully planning where and how to spend their available energy. It is a critical tool to prevent and/or reduce PEM. Activity logs and heart rate and activity monitors can be used to help patients understand when they are overdoing their specific energy limits.

4. Treat/manage symptoms.
While there are no treatments approved specifically for ME/CFS, a number of different pharmacological and non-pharmacological treatments can help reduce the severity of symptoms.

Drugs should be started at low doses and increased slowly to avoid triggering drug sensitivities common in ME/CFS.

5. Treat Comorbid Conditions.
As listed earlier, a number of conditions may be comorbid (exist at the same time) with ME/CFS. Treating these comorbid conditions using the appropriate standard of care will not cure ME/CFS but it may improve the patient’s quality of life.

Where to learn more:

Here is a short handout written by expert ME/CFS clinicians that you can print and take to your doctor:
DIAGNOSING AND TREATING MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME (ME/CFS)
– U.S. ME/CFS CLINICIAN COALITION –
Version 2, July 2020
https://drive.google.com/file/d/1SG7hlJTCSDrDHqvioPMq-cX-rgRKXjfk/view