Have you ever looked at a multiple sclerosis (MS) research paper and thought “why in the world did they waste time and money on that?” I read one of those reports the other day, about MS fatigue and life quality. The news was headlined in one publication as “Fatigue significantly contributes to impaired well-being in MS.” Gee, really?
The Finnish researchers studied data from more than 500 people with MS. They reviewed the patient’s self-reported fatigue levels on several scales quality of live (QoL) using several questionnaires. The fatigue results were then correlated with the QoL measurements.
What did the researchers find? Forty-seven percent of the patients reported fatigue at some point, 8% reported borderline fatigue, and 45% reported none. The study reports that a score of five or greater on the Fatigue Severity Scale (FSS) “correlated significantly with the impact of the disease…and showed a strong negative correlation with measures of QoL.”
Does this MS research help people with MS?
Is that really surprising? For many people with MS fatigue is a constant in their life. It takes more than the normal amount of energy to walk, getting a good night’s sleep can be difficult, and they might have bladder and/or bowel problems that wear them down. Any of these problems could lead to a reduced ability and/or desire to socialize. The fatigue might prompt concerns about keeping a job or holding a marriage together, and about what the future might bring. Is it any wonder their fatigue results in a poor quality of life? This should be a surprise to no one.
The report concludes: “As an invisible and debilitating symptom fatigue should be evaluated systematically. In the screening, it is important to recognize the characteristics of the different scales. Whereas the FSS may serve as an overall screen, the FSMC [Fatigue Scale for Motor and Cognitive Functions] may help to identify aspects of cognitive and motor fatigue separately.”
I’m not a scientist or a healthcare pro, so maybe I’m missing something. Maybe I’ve just been unusually tired and cranky lately. But this MS research doesn’t seem to uncover anything that would improve my fatigue or my quality of life. I want to find ways to improve the quality of life of people with MS, but please tell me some things that I haven’t known for decades.
(Image by StockSnap from Pixabay)
(This post first appeared as my column on the Rare Disease Advisor website.)
