Chronic Fatigue Syndrome Diagnosis

Expect Lots of Testing

A doctor reviews a chart with a patient.
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Chronic fagtigue syndrome is a difficult condition to diagnose. There's no lab or imaging test for it, so it's a diagnosis of exclusion. That means the first step is for doctors to rule out conditions with similar symptoms.

That can make the diagnostic process lengthy and frustrating, because you know you're sick, yet test after test comes back negative. Add to the weight time is that you have to have symptoms for six full months before your doctor can even consider chronic fatigue syndrome—that's actually part of the diagnostic criteria.

Understanding the diagnostic process can help you get through it with less frustration and fear.

To date, no medical specialty has "claimed" this condition. That means you can't count on a certain type of doctor knowing how to diagnose and treat it. It's up to you to find a doctor who's knowledgeable, and that not always easy.

Getting a Chronic Fatigue Syndrome Diagnosis

While no medical test has been proven to provide an accurate diagnosis of this disease, you can find some doctors and other health-care practitioners who claim they do have tests that can identify it, or at least identify certain subgroups of chronic fatigue syndrome patients. However, not one of these tests has yet to garner the support of the overall medical community.

Why is that? Because they don't have the evidence. I may be that one or more of these methods is accurate, but for now, we simply don't have the scientific backing to say one way or the other.

As mentioned above, chronic fatigue syndrome is a diagnosis of exclusion. Before diagnosing it, your doctor will want to check you for other things that could be causing your symptoms. That list may include:

Depending on your specific symptoms, your doctor may not ask for all of these and may ask for additional tests and scans that aren't on this list.

2015 Diagnostic Criteria

A comprehensive report from the Institute of Medicine in 2015 put forth new diagnostic criteria (along with a new name, systemic exertion intolerance disease, or SEID). The report was based on their review of more than 9,000 scientific studies. The criteria they came up with are similar to the Canadian Consensus Criteria, which advocacy groups had long called for the U.S. to adopt.

The new diagnostic criteria include:

    Many patients, doctors, and advocates believe these criteria better reflect the reality of the disease than the older critieria. The previous diagnostic criteria included persistent fatigue plus four or more symptoms from a list that included all of the above except orthostatic intolerance as well as several other symptoms, including sore throat, joint pain, headaches, and tender lymph nodes. However, it was possible under the old criteria to diagnose chronic fatigue syndrome without any of the symptoms (save fatigue) required by the new criteria.

    Some studies suggested that the old criteria were too broad and that it could misdiagnose some psychiatric conditions, especially major depressive disorder, as chronic fatigue syndrome.

    So while the new name, SEID, hasn't appeared to catch on, the new diagnostic criteria have met with enthusiastic support from many.

    Learn more about the report: New Name, Criteria for Chronic Fatigue Syndrome

    Tracking Your Symptoms

    While they're not required for a diagnosis of chronic fatigue syndrome, a complete list of your symptoms can help your doctor diagnose you. It's helpful if you first become familiar with the full range of chronic fatigue syndrome symptoms and then start keeping a symptom journal.

    Source:

    Centers for Disease Control and Prevention, May 3 2006. "Diagnosing CFS"

    Maes M, Anderson G, Morris G, Berk M. Diagnosis of myalgic encephalomyelitis: where are we now? Expert opinion on medical diagnostics. 2013 May;7(3):221-5. doi: 10.1517/17530059.2013.776039.

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