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.
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 could find them quite similar and be inclined to conclude that you’re just depressed. Or doctors could conclude that some people with depression actually have ME/CFS. (Avoiding that is one reason Lenny Jason, a psychologist, argues for using standardized psychiatric interviews.)
Symptom overlaps between the two diseases include fatigue, problems sleeping, feeling lethargic and difficulty thinking or concentrating. Symptoms more associated with depression include feelings of worthlessness/guilt, diminished interest or pleasure in everyday activities, recurring thoughts of death or suicide.
The Jason Studies
Natelson’s 1995 study found that people with ME/CFS tended to have more physical and fatigue symptoms and fewer mood symptoms on the Beck Depression Inventory (BDI) than people with major 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.
2006 Study Results
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 become 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
- indulge in much less self-reproach than people with depression.
Post-exertional malaise (PEM) – considered by many to be the core symptom of ME/CFS – leads the list. Post-exertional malaise refers to symptom flares that typically results when people with ME/CFS engage in too much physical and/or mental activity. (PEM is such a distinctive part of ME/CFS that the term PEM was coined to describe it.
Severe PEM is common in ME/CFS but not in depression. Jason’s analysis indicated that the PEM experienced in depression is more similar to that found in healthy people than that experienced by people with ME/CFS.
The four symptoms identified in Jason’s study – fatigue, post-exertional malaise, unrefreshing sleep, and cognitive problems – are considered 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 experience much post-exertional malaise or unrefreshing sleep or have the cognitive problems found in ME/CFS. They also don’t spend nearly as much time fatigued, and they typically have a lot more self-reproach.
So you’re fatigued much of the time, can’t exercise without symptoms, wake up feeling 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 (ME/CFS) – not depression.
You may be depressed but if you are your diagnosis should include chronic fatigue syndrome (ME/CFS) as well.
A Psychologist (with ME/CFS) Differentiates Depression and Chronic Fatigue Syndrome (ME/CFS)
Dr. Kristina Downing-Orr, a clinical and research psychologist who developed chronic fatigue syndrome (ME/CFS) is well acquainted with both conditions. She reports that
- The exhaustion in ME/CFS is more constant, disabling and global than in depression and is exacerbated by exertion
- Apathy is common in depression but not in ME/CFS. Instead, the limitations imposed by ME/CFS leave most patients feeling frustrated, upset and impatient to get better.
- Depressed people don’t want to get out of bed. People with ME/CFS want to get out of bed but often can’t.
- When people with ME/CFS push themselves too much they feel worse and can experience a lengthy setback (PEM). When people with depression push themselves they usually feel better.
- Mental exertion can lead to a worsening of physical symptoms in ME/CFS but has no detrimental effects in depression
- Self esteem is not affected in ME/CFS but is in depression
- Suicidal thoughts, when present in depression tend to be pervasive. If suicidal thoughts occur in ME/CFS they tend to be temporary
ME/CFS is Not a Somatization Disorder
Somatization disorders occur when a person misidentifies psychiatric symptoms for physical ones. The high levels of mood disorders present in ME/CFS and it’s many symptoms have sparked efforts by psychiatrists to label the disease as a somatization disorder.
A 2019 study which assessed the effects of having a comorbid disorder such as fibromyalgia (FM) or a mood disorder on the symptoms associated with ME/CFS attempted to clear up that issue. Since mood disorders have a “multiplier” effect on somatization disorders (they make them worse) the researchers determined if the presence of mood disorders (or comorbid disorders such as exacerbated the symptoms associated with ME/CFS.
Because mood disorders did not exacerbate the symptoms associated with ME/CFS but have a comorbid disease did, the researchers determined that ME/CFS is not somatization disorder and is not closely allied with mood disorder but that it is closely allied with diseases like FM and irritable bowel syndrome (IBS). The increased rate of mood disorders in ME/CFS is most likely simply the result of having a difficult, chronic illness.
- Check out Jason’s 2006 study: Hawk. Jason. Differential Diagnosis of Chronic Fatigue Syndrome and Major Depressive Disorder
- Check out Dr. Kristina Downing-Orr’s book
- Use the DePaul Symptom Inventory to chart your symptoms
- Report From San Fran V: Defining Moments – Dr. Leonard Jason on the House of Cards in Chronic Fatigue Syndrome