The Concept of Fatigue in Multiple Sclerosis

Michelle

Decennial ME/CFS patient
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The Concept of Fatigue in Multiple Sclerosis Journal of Neuroscience Nursing

While this article at Medscape (note: registration required -- and well worth the hassle) is specifically about Multiple Sclerosis, I found it to be interesting reading in terms of comparing and contrasting with ME/CFS as the two illnesses are so very similar.

To begin with is a definition of "fatigue":

Aaronson et al. proposed the following definition of fatigue: "The awareness of a decreased capacity for physical and/or mental activity due to an imbalance in the availability, utilization, and/or restoration of resources needed to perform activity" (p. 46) This definition has more clarity than other definitions of fatigue because it avoids words such as exhaustion and tiredness that are open to misinterpretation. Furthermore, this definition includes a cause of fatigue, an imbalance in needed resources, and a way of looking at a treatment for fatiguethe restoration of needed resources.
Having a standard definition like this for fatigue, or even a standard list of types of fatigue, would be particularly helpful in studying it across illnesses.

It was interesting to note that approaches to the treatment of fatigue in MS are very similar to ME/CFS, including energy conservation.

Several studies have empirically examined whether energy conservation is effective in reducing fatigue by including participants in a course wherein they are taught energy-conservation techniques, and afterward measuring their fatigue levels (Mathiowetz, Finlayson, Matuska, Chen, & Luo, 2005; Matuska, Mathiowetz, & Finlayson, 2007; Vanage et al., 2003). A significant mitigation of fatigue was found in those patients who attended the classes and continued to use energy-conservation strategies (Mathiowetz et al.; Matuska et al.; Vanage et al.).
I had no idea that anybody besides Lenny Jason had really studied energy conservation much.

Just as with ME/CFS, clinicians trying to assess fatigue in MS have a difficult time as well:

Upwards of 30 different instruments have been developed to measure fatigue, but none has emerged as the definitive measure (Dittner et al.; Kos, Nagels, D'Hooghe, Duportail, & Kerckhofs, 2006; Schwid et al.).
Seems as if just about everybody finds questionnaires to be problematic. Unless you're Trudie Chalder... ;-)

Speaking of Ms. Chalder, the last observation I had was the ability of the authors to discuss pyscho-neurological symptoms like depression without an assumption that the fatigue itself is psychogenic in origin or a long disclaimer about how it really is a result an underlying biomedical condition. How I cannot wait for the day when the same is true with ME/CFS.

While there isn't any sort of epiphany here regarding ME/CFS, I think we can learn a great deal by reading as widely as possible about how other disease communities are dealing with a similar issue. Articles like this show us how a journal like Fatigue, mentioned a few months back on Co-Cure, could be particularly useful for ME/CFS patients, as well as other diseases, without trivializing ME/CFS as just "fatigue."
 

Frickly

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Thanks,

"While there isn't any sort of epiphany here regarding ME/CFS, I think we can learn a great deal by reading as widely as possible about how other disease communities are dealing with a similar issue. Articles like this show us how a journal like Fatigue, mentioned a few months back on Co-Cure, could be particularly useful for ME/CFS patients, as well as other diseases, without trivializing ME/CFS as just "fatigue."


I also beleive the above is true. Thanks for the good info.
 

Cort

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Despite the over emphasis on fatigue in chronic 'fatigue' syndrome I think you can say that virtually every time a researcher focuses on fatigue she/he does us a favor. Nobody studied fatigue until recently.

Dr. Light noted that while the pain producing pathways in the body and brain are becoming fairly well elucidated the fatigue producing pathways are basically a mystery. But there is more and more focus on fatigue - not Justin CFS - but in the fatiguing disorders such multiple sclerosis, liver disease, cancer and heart disease. Each of these diseases has a subset of patients who suffer from severe and disabling fatigue and usually cognitive problems. The New York Times recently had an article on a subset of horribly fatigued and cognitively challenged post ICU patients. I think the more researchers look the more they'll find the strain subsets of patients who just been hammered by X. or Y illness.

Ultimately that means more research for all of us. my dream is a research conference in which all these fatigue researchers studying all these different diseases get together and compare notes.

I think it's all good for us. glad to see this article - thanks for posting it.
 
C

Cynthia

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Michelle, thanks for posting this.
"An imbalance of restoration of recourses needed to perform activity." I know that I have a problem big time with sleeping..thus, the lack of..that restoration.
Yes, there is a problem with drs. trying to figure out why, I, or others with MS can't get to sleep, not like a normal person. And Cort, I do wake up often with pain, a lot of pain, so pain is causing me to lose a lot of rest. Oh, I sleep, an hr. here, a couple there, through the night..have to take naps, whatever it takes to get a bit of a rested feeling. I'm sure many here do the same. Just doing what's necessary until someone can figure us out.