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A Guide To Diagnosing Chronic Fatigue Syndrome (ME/CFS)

 "More than one million Americans have CFS yet less than 20% have been diagnosed. This is a major health concern."

  Dr. William Reeves, M.D. Director of the CDC's CFS Research program  

 Not An Easy Process!  Diagnosing chronic fatigue syndrome (ME/CFS) is not always easy. Because no laboratory tests are diagnostic for it diagnosing chronic fatigue syndrome (ME/CFS) involves having a physician examine your symptoms and excluding other diseases that could cause them. Your physician will take your personal history, probably asking questions such as:

  •  When did your fatigue start?
  •  How have your energy and activity levels been affected?
  •  Are your symptoms worse after you exercise?
  •  Do you have any problems with sleep?
  •  Do you have any problems with memory or concentration?
  •  Do you have any pain?
  •  What prescription or over the counter medications are you taking?
  •  Do you use drugs or drink alcohol?
  •  Have you been under increased stress lately?

Dig Deeper! Check out  I'm Fatigued - Do I Have chronic fatigue syndrome (ME/CFS)?

Ruling Out Other Diseases – Because many CFS symptoms are fairly general a key part of a diagnosis involves ruling out other diseases that could cause them such as mononucleosis, multiple sclerosis, chronic Lyme disease, sleep disorders, severe obesity and reactions to medications. Physicians may use the criteria below to determine if you have it.

The 1994 International ("Fukuda") Definition For Chronic Fatigue Syndrome: The Fukuda definition was created for researchers and physicians. Although widely recognized as inadequate the Fukuda definition is nevertheless the most widely used definition of this disease. (See the Canadian Consensus Definition below for an alternative definition designed for physicians). According to the Fukuda definition a person is considered to have ME/CFS if they have:

Chronic Fatigue: unexplained, persistent or relapsing chronic fatigue that is not substantially alleviated by rest, and results in substantial reductions in levels of occupational, educational, social, or personal activities; and

A Certain Set of Symptoms:  four or more of the following symptoms for 6 or more consecutive months   
  • self-reported impairment in short-term memory or concentration
  • post-exertional malaise (extreme, prolonged exhaustion and exacerbation of symptoms following physical or mental exertion)
  • unrefreshing sleep
  • muscle pain
  • multi-joint pain without joint swelling or redness
  • sore throat
  • tender neck lymph nodes
  • headaches of a new type, pattern, or severity

A Detailed Medical History:  The CDC recommends physicians give potential CFS patients a thorough physical examination and mental screening including the  following tests :

Laboratory Tests: urinalysis, total protein, glucose, C-reactive protein, phosphorous, electrolytes, complete blood count (CBC) with leukocyte differential, alkaline phosphatase (ALP), creatinine, blood urea nitrogen (BUN), albumin, ANA and rheumatoid factor, globulin, calcium alanine aminotransferase (ALT) or aspartate transaminase serum (AST), thyroid function tests (TSH and Free T4).

Finding A Physician: CFS is only now slowly making its way into the curriculum at medical schools and many physicians know little about it. The Centers For Disease Control estimates that only about 15-20% of CFS patients have been diagnosed. What to do if you’re having trouble getting diagnosed? The Finding a Physician Page may be helpful (Page is Coming Soon).

Take An Online Test - because a CFS diagnosis requires ensuring that you do not have another disease only a physician can diagnose CFS. The CFIDS Association of America provides, however, an online questionnaire that can help people understand whether or not they may have CFS.

Dig Deeper: The Canadian Consensus Definition of ME/CFS - In contrast to the Fukuda Definition the CCD was written for physicians. It is a long document that provides a more or less complete picture of the disease and is preferred by many doctors and patients. The CCD posits that postexertional malaise and cognitive problems are hallmarks of this disorder.

Dig Deeper: The Pediatric Definition of ME/CFS -  was developed under the  auspices of International Association of chronic fatigue syndrome/ ME (IACFS/ME). It describes how the disease appears in children and is very similar to the Canadian Consensus Definition

Dig Deeper: The Empirical Definition of Chronic Fatigue Syndrome was developed in 2005 by a small group of researchers at the Centers for Disease Control. The Empirical Definition introduced emotional criteria, reduced the criteria for  fatigue and  created an algorithm based on standardized testing physicians and researchers could use to identify chronic fatigue syndrome patients. This definition resulted in greatly increased prevalence rates and has been much criticized ; it has not been adopted by either physicians or researchers.

Dig Deeper: For more on the controversy on how to define chronic fatigue syndrome (ME/CFS) see 'Hitting a Moving Target'

Dig Deeper! To Prognosis and Treatment Success Rates

The Phoenix Rising website is compiled by a layman. It is not a substitute for a physician and is for informational uses only. Please discuss any treatments in these pages with your physician.

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Centers For Disease Control: Diagnosing CFS / CFS Toolkit

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