Chronic Fatigue Syndrome Diagnosis in Children and Teens: What Kids with CFS Desperately Need

Chronic Fatigue Syndrome Diagnosis in Children and Teens: What Kids with CFS Desperately NeedChronic fatigue syndrome diagnosis is finally becoming a reality for some children and teens suffering from this very real and disabling condition, yet research shows that many kids are still going undiagnosed. While chronic fatigue syndrome (CFS) is not easy to diagnose in adults, let alone in children, diagnosis is not only possible but essential. Many general healthcare practitioners don’t feel confident in making a CFS diagnosis, studies show, and it is likely that even fewer feel confident in diagnosing CFS in children or teens. Nevertheless, without a CFS diagnosis, kids can’t and won’t get the treatment they need.

CFS diagnosis in children and teens

The most common way CFS is diagnosed in children and adolescents is with the US Centers for Disease Control and Prevention (CDC) criteria created in 1994, officially called the “International CFS Case Definition (1994)”. Worldwide, there are a few other commonly used criteria to diagnose CFS, but as with the CDC’s 1994 criteria, none have an official separate version for diagnosing CFS in children. According to CDC criteria, a child or adult has CFS if they have been experiencing severe chronic fatigue of 6 months or longer that is not explained by any medical or psychiatric diagnosis.[1] In addition, they must have 4 or more of the following 8 symptoms:

  1. post-exertional malaise (fatigue and other symptoms) lasting more than 24 hours
  2. unrefreshing sleep
  3. significant impairment in short term memory or concentration
  4. muscle pain
  5. multi-joint pain without swelling or redness
  6. sore throat
  7. tender lymph nodes
  8. headaches of a new type, pattern, or severity

Accurate diagnosis of CFS is a complex task for healthcare providers because in addition to meeting the criteria above, patients cannot have any other illnesses that could cause similar complaints but require different treatment. It is the doctor’s duty to conduct a thorough medical history, physical examination, mental status examination, and laboratory tests to identify underlying or contributing conditions that require treatment. According to the CDC, CFS diagnosis cannot be made without such an evaluation.[1]

The dire consequences of CFS in children

Most doctors working within the conventional medical system do not have the time or inclination to do this. This is exceptionally unfortunate because more kids and teens have CFS than is realized, and kids with CFS can be severely fatigued and physically impaired for years. According to a 2010 study on adolescent CFS published in JAMA Pediatrics , between 1.3% and 4.4% of U.S. teens have CFS, with about 4 adolescent females having the illness to every 1 male. Kids with CFS often have considerable pain and poor mental health, self-esteem, and general health.[2] A study by UK researchers found that having CFS profoundly effects children’s quality of life. Most kids are ill for an average of 3 years, the UK researchers found, and very few are able to attend school full-time. They have significant role/social limitations attributable to their physical health problems as well as lower self-esteem, lower mental health, increased bodily pain and discomfort, and decreased family activities.[3]

Hope for children and teens with CFS

Clearly, younger CFS patients still face more obstacles than adults in getting their illness recognized and diagnosed, let alone treated. Yet, hope and help are available. Generally, integrative physicians have more experience in diagnosing and treating CFS in both children and adults.

In addition to conventional laboratory tests to help rule out potential causes of chronic fatigue, they are more likely to use additional lab tests and take more extensive histories. They tend to spend more time with chronically fatigued children and their families, searching far and deep for the underlying cause and the therapies that are likely to make the biggest difference. If you’re concerned that your child or teen may have CFS, make an appointment with an integrative physician today.

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[1] CDC. CFS 1994 Case Definition.

[2] JAMA Pediatr. 2010 Sep;164(9):810-4.

[3] Pediatr. 2010 June 1;125(6):e1324-1330.

Originally published in 2013, this blog has been updated.

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