[This post first appeared last month in my column on www.multiplesclerosisnewstoday.com]
Feeling tired? No surprise there. Fatigue is as much a part of living with Multiple Sclerosis as sand is a part of the beach where I live.
It’s interesting, then, that neurologists seem to have no good system for measuring levels of MS fatigue or any treatments that are really effective over the long term.
Physiologists at Colorado State University are raising those issues in a paper titled “Fatigue in Multiple Sclerosis: Misconceptions and Future Research Directions,” published in the Aug. 2 issue of Frontiers in Neurology. In it, they assert that “fatigue remains poorly understood and [because of that people with MS] continue to suffer from a lack of effective fatigue treatments.”
The paper points to research by B.M. Kluger and others, and puts it this way: “Current treatments are nonspecifically targeted to a vaguely defined symptom with unsatisfactory outcomes.” In addition, says Kugler, MS studies often fail to understand the difference between fatigue, depression and lack of sleep. I translate those statements to say: They’re shooting in the dark.
Defining MS fatigue
The Colorado State physiologists hope to find a way to shine a light on that target. They begin by offering this definition of fatigue: “The decrease in physical and/or mental performance that results from changes in central, psychological, and/or peripheral factors.” They define “central” factors as things related to the central nervous system. “Psychological” factors include mood disorders, motivation, performance feedback, and arousal. “Peripheral” factors are physical changes.
All of these depend upon what the authors call “conditional dependencies”: what the person with MS is doing, the conditions (e.g., heat and cold) where the person is, and the physical and mental condition of that person. These all interact with each other, as well as with the “factors” listed in my previous paragraph.
Assessing MS fatigue
Since MS fatigue isn’t a one-size-fits-all problem, the physiologists suggest that doctors measure it using multiple tests. These include electromyography, metabolic measurements, transcranial magnetic stimulation, magnetic resonance imaging (MRI), and near infrared spectroscopy.
Then, overlay the test results against the standard definition of fatigue that the Colorado State physiologists have proposed. “By using a uniformed understanding and measurement of fatigue,” they write, “progress may finally be made in effectively treating the symptoms of fatigue and improving quality of life” for MS patients.
A patient’s view
Sounds pretty logical to me.
There’s no doubt that my fatigue is affected by a number of factors, just as the Colorado physiologists suggest: heat, lack of sleep, stress, occasional depression. If I told a doctor I felt warm I’d expect to have my temperature taken … or my blood pressure measured if I was stressed. But no one has ever measured my fatigue.
How, and how much, does my fatigue change from day to day, and how can it best be treated? A drug like Provigil can be prescribed to improve my alertness if my fatigue is due to lack of sleep, but what if it’s due to stress or depression … or a combination of them?
I think the Colorado State researchers have the right idea. Now, I’d like to hear the thoughts about this approach to handling MS fatigue from the neurologists and other medical professionals who may be reading this.