Wrong diagnoses hurt. They lead doctors to prescribe treatments that don’t work and may even be harmful (exercise!) and they keep doctors from prescribing treatments that do work.  They waste patients’ money and, given the fact that the earlier a person is diagnosed with ME/CFS the better chance they have of improving their health, they contribute to poor health.

Many people with  ME/CFS and FM are mistakenly diagnosed with depression first

Many people with ME/CFS and FM are mistakenly diagnosed with depression first

The fact that only from 15-20% of people in the U.S. with Chronic Fatigue Syndrome have been diagnosed with it suggests wrong diagnoses run rampant in this disorder. Of all the wrong diagnoses, being diagnosed with depression is surely the most common.

Who has not been diagnosed with depression at some point?  I was diagnosed with depression by my primary care provider only to have the psychologist I was sent to tell me, “I know what depression is and you’re not depressed.”

I was lucky.  (Of course my primary provider still didn’t have a clue about ME/CFS, but at least he wasn’t prescribing me with antidepressants and exercise.)

Fortunately, Dr. Lenny Jason has come up with a way to convince your doctor that you’re not simply depressed.  But first, a little history.

A Little History

The most commonly used definition for ME/CFS, the Fukuda definition, has contributed to the problem. A doctor looking at the symptomatic criteria for major depression and the Fukuda criteria would find them quite similar and be inclined to conclude that you’re just depressed.

On the flip side they could also  conclude that some people with major depression have ME/CFS instead.  This is one reason Lenny Jason argues for using standardized psychiatric interviews.

Researchers have been working up to separating the two illnesses for quite some time.  Natelson’s 1995 finding that people with ME/CFS tended to mark more physical and fatigue symptoms and fewer mood symptoms on the Beck Depression Inventory (BDI) than people with major depression suggested that different symptoms were found in the two disorders.

figure  writing

Measuring both frequency and severity of symptoms turned out to be key to differentiating ME/CFS from depression

Jason’s 2005 finding agreed with that conclusion. It found that including activity levels or other symptoms not found in the Fukuda criteria (muscle weakness, need to nap each day, frequently losing train of thought, difficulty finding the right word, confusion–disorientation, hot and cold spells, etc. ) allowed him to successfully differentiate between the two illnesses. Adding symptom severity (instead of simply symptom presence) to the Fukuda criteria also helped to differentiate the two illnesses.

Then in 2006 Jason more or less ended the discussion by combining the results of those two studies to come up with a set of symptoms that could definitively  differentiate between ME/CFS and depression.

(Note that a person with ME/CFS who is depressed will be defined as someone with ME/CFS who is also depressed.  The goal is to get a Chronic Fatigue Syndrome diagnosis in there when a person has ME/CFS.)

The difference between people with ME/CFS and people with depression ended up being quite simple.  People with ME/CFS may have some similar symptoms to depressed people, but symptoms which are severe in both disorders are much different.

People with ME/CFS have much more

  • post-exertional malaise (PEM)
  • unrefreshing sleep,
  • are fatigued a much greater percentage of the time
  • are more confused and disoriented
  • have more severe shortness of breath
  • much less self-reproach than people with depression.
worn out bicyclist

The degree of post-exertional malaise was one of the great discriminators between the two conditions

Post-exertional malaise leads the list.  Severe PEM is common in ME/CFS but in the discriminant analysis Jason did the ‘M-values’ (meaning unclear) for PEM in depression were much closer to those of the healthy controls than the ME/CFS patients. High rates of fatigue, post-exertional malaise, unrefreshing sleep, and cognitive problems appear to be the four hallmark symptoms of ME/CFS.

If your doctor thinks you’re simply depressed, you might want to point out that studies indicate people with depression don’t have the high rates of post-exertional malaise, unrefreshing sleep, and cognitive problems found in ME/CFS. They also don’t spend nearly as much time fatigued, and they have a lot more self-reproach.

So you’re fatigued much of the time, can’t exercise without symptoms, wake up like a leaden lump no matter how much sleep you get, feel confused and disoriented a lot, and aren’t into beating yourself up a lot, you have Chronic Fatigue Syndrome – not depression. (If you experience shortness of breath you might want to bring that up also.)

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