What Is Juvenile Chronic Fatigue Syndrome?
Juvenile chronic fatigue syndrome (JCFS) is quite like adult chronic fatigue syndrome (CFS or ME/CFS), but with some important differences. It’s worth taking a look at how this illness impacts younger people as well as at other differences that researchers have identified.
Chronic Fatigue Syndrome Basics
Before looking at the specifics of JCFS, it helps to get a general understanding of CFS.
Research indicates that CFS involves dysregulation of several systems. Many researchers believe the immune system is the hardest hit, but the nervous system and endocrine (hormone) system may also be involved.
CFS is often described as “having a flu that never goes away.” In some cases, the symptom level is fairly consistent over time, while in others it varies widely from day to day or week to week. People can have any combination of dozens of symptoms, and often it’s hard to believe that these symptoms are part of the same condition.
CFS is a controversial illness. Not all health-care providers believe it exists, and among those who do believe in it, not all are well educated on how to diagnose and treat it.
Symptoms of Juvenile Chronic Fatigue Syndrome
So far, research has not established whether JCFS tends to feature a different set of symptoms than adult CFS.
The fatigue of CFS isn’t like healthy people feel when they’re tired. It’s a unique fatigue state that can be highly debilitating. Also, fatigue is not the only symptom.
Many people with CFS have a symptom called post-exertional malaise, which leaves them highly exhausted after exercise and makes it take longer for them to recover from exertion. For example, a healthy person who rides an exercise bike as hard as they can for 20 minutes can generally perform the same day after day. Someone with CFS, on the other hand, would be unable to repeat their performance for two or more days after the initial workout. They may also experience crushing fatigue, widespread achiness, impaired mental processes and flu-like symptoms for several days.
Also prevalent is cognitive dysfunction, which is often referred to as “brain fog.” It can include problems with attention, short-term memory, verbal expression, retaining what is read and spatial orientation.
These symptoms alone are enough to severely disable some people, and they can have many other symptoms as well. Other common symptoms of CFS include:
- Unfreshing sleep
- Anxiety, which studies show may be especially prevalent in JCFS
- Dizziness upon standing (called orthostatic intolerance or postural orthostatic tachycardia syndrome)
- Pain in the joints, without redness or swelling
- Sore throat
- Headaches, the pattern of which was new at illness onset
- Tender lymph nodes
- Chronic cough
- Nerve sensations such as numbness, tingling or burning (called paresthesia)
People with CFS often have overlapping conditions as well. These can sometimes be confused with symptoms, but they may need to be diagnosed and treated separately. Common overlapping conditions include:
- Irritable bowel syndrome
- Food, chemical or environmental allergies/sensitivities
How Common Is Juvenile Chronic Fatigue Syndrome?
JCFS is considered rare. According to the CDC, the illness impacts between 0.2% and 0.6% of 11-15 years olds. The CDC also says CFS is less common in adolescents than in adults, and less common in children than in adolescents.
Some research suggests that JCFS is more likely in children of parents who have adult CFS or another similar illness, suggesting a possible genetic component.
Diagnosing Juvenile Chronic Fatigue Syndrome
At this time, we don’t have specific diagnostic criteria for JCFS, so healthcare providers rely on the adult CFS criteria. It can be a challenge to find a healthcare provider who understands CFS, so you may need to check with pediatricians, family doctors, and others in your area to find an appropriate one.
To diagnose CFS, a healthcare provider generally does a thorough examination and performs tests for multiple illnesses that can cause similar symptoms. Because there is no diagnostic test for CFS, it’s considered a “diagnosis of exclusion.”
Diagnostic criteria include:
- Unexplained persistent fatigue, not due to exertion, that’s not substantially relieved by rest
- Four or more other major symptoms, such as brain fog, post-exertional malaise, unrefreshing sleep and tender lymph nodes
- Fatigue and other symptoms much have been present for at least six months
Treatments for Juvenile Chronic Fatigue Syndrome
There is no cure for any form of CFS. Instead, we have to manage the symptoms. Effective management can lead to substantial improvement in functionality and quality of life.
Again, we don’t have much research specific to JCFS, so we have to rely on adult CFS research.
No single treatment is shown to improve all symptoms of CFS. Most people need to find their own combination of treatments and management strategies. This can take a lot of time and experimentation, which can involve several setbacks. While the process is often long and frustrating, it’s worth it for the improvement it can provide.
The treatment regimen may include:
- Medications to control symptoms
- Nutritional supplements
- Dietary changes
- Consistent, moderate exercise, physical therapy, or graded exercise therapy
- Psychological counseling or cognitive behavioral therapy
- Treatments such as massage/bodywork or acupuncture to control pain
In 2012, research indicated that the drug clonidine appeared safe enough to begin controlled trials as a potential treatment for JCFS.
Some medical professionals have developed experimental protocols for treating CFS based on hypotheses or theories that are not yet proven. Two of the better-known ones are the Pall protocol and the Glutathione protocol. They have varying degrees of scientific support, with some gaining mainstream attention and others widely dismissed.
It’s important to remember that these protocols have not been rigorously tested, either for CFS or JCFS, so we don’t know how safe or effective they are. Be sure you talk to your healthcare provider about any treatments you consider for you child, and do your own research, as well.
What’s the Prognosis?
Evidence suggests that half or more of adolescents with JCFS may completely recover from the illness within a couple of years. In one follow-up study, those who didn’t recover were still severely fatigued and impaired.
Early diagnosis and treatment is considered key to making major improvements in symptoms. If you suspect your child has JCFS, it’s important to seek a diagnosis promptly.
Special Challenges of Juvenile Chronic Fatigue Syndrome
Chronic illness of any kind can have a big impact on the self-esteem. This may be especially true when the illness compromises function to the degree that JCFS often does.
Kids with JCFS may feel “different” from their friends and classmates. They may also feel isolated because they can’t participate in activities like other kids. It’s common for them to push themselves to keep up, which only makes their symptoms worse later on.
Young people with JCFS are especially likely to miss a lot of school – as much as 33%, according to the follow-up study mentioned above. That can lead to a lot of extra stress, and research shows this group may be especially likely to be perfectionists and to be highly critical of themselves. These traits are often linked to depression, according to a 2011 study.
A 2012 study showed that young people with this condition had high levels of anxiety over multiple things that were due to their illness. Researchers identified five major themes:
- Social loss and adjustment
- Uncertainty and unpredictability
- Feelings of vulnerability
- Being different
- Making contributions toward their own recovery
The kids in the study were made more anxious by the controversy over whether CFS is “real,” their inability to explain their illness, being bullied, not being believed about being sick, and distrust from adults in their life. Families, healthcare providers and schools should be aware of these problems and help work toward solutions.
Families of these kids are likely to feel a significant impact. Treatment may cause financial difficulty, and the time, energy and stress involved in caring for the sick child can strain each family member as well as familial relationships.
These problems can be compounded by disbelief in the illness. Sometimes, parents, teachers, friends and even medical professionals may not believe JCFS is real, or that the child has it.
For academic problems, you may want to consider tutor, online classes, or homeschooling. For emotional problems, it may be beneficial for the entire family to have psychological counseling.