As we have discussed previously, there is no diagnostic test for CFS. The diagnosis is a clinical one: the patient’s symptoms must meet the case definition criteria (See “Do I have CFS” box below) and all other medical possibilities must be ruled out. As a result, the diagnosis is often missed. Any doctor can make the diagnosis, regardless of their specialty. However, because many physicians have a low level of awareness of CFS, patients often consult several physicians over several years before getting an accurate diagnosis. There are a small number of self-designated CFS specialists in the US who can be identified from referrals or internet searches.
If there are scientists or researchers reading this, at the top of my wish-list–after wishing for my son’s sudden and miraculous recovery—is my wish for a blood test to diagnose CFS based on biomarkers. Why? It is my belief that until a blood test specific for CFS markers is developed, we will not be able to fully identify patients who are “really” affected by CFS. Until we can identify those patients with certainty, we will not be able to conduct focused clinical trials on potential medical therapies to treat these patients.
Dr. Donnica’s Decisionnaire ™: Do I—or Does My Child–Have CFS?
The diagnosis of CFS is based upon having four or more of the following symptoms in addition to the first one (which is required for the diagnosis), and having no other medical problems to explain these symptoms. There is no “test” for CFS. You may be at increased risk if an immediate family member has had CFS or fibromyalgia, but 80% of people with CFS have no known family history.
___I have had new, unexplained, persistent, or relapsing physical and mental fatigue for at least six months (If under 18, make this three months).
___My fatigue is not the result of ongoing exertion.
___My fatigue is not relieved by appropriate rest.
___I have at least four of the following symptoms:
___Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity (“post exertional malaise”)
___Unrefreshing sleep, insomnia, day/night reversals, or excessive daytime sleepiness
___Substantial impairment of short-term memory or concentration, “brain fog”, problems with my short-term memory, confusion, disorientation, difficulty finding the right words or numbers, difficulty concentrating
___Widespread or migratory muscle pain
___Pain in the joints, without swelling or redness
___Headaches of a new type, pattern or severity
___Tender armpit and/or neck lymph nodes
___Persistent or frequent sore throat
___In addition, I have the following symptoms which may be CFS related:
___I have unexplained abdominal or chest pain
___I have difficulty concentrating,
___I have problems maintaining my balance
___I have hypersensitivity to light (photophobia) or noise
___I have hypersensitivity to emotional overload
___I have dizziness, palpitations, urinary frequency, or shortness of breath
___I have been told by a doctor that I have orthostatic intolerance, neurally mediated hypotension, or postural orthostatic tachycardia
___I have irritable bowel syndrome
___I have low body temperature, intolerance to heat or cold, often feel feverish, often feel like I have chills, inappropriate sweating, abnormal appetite
___I have new sensitivities to foods, medications or chemicals