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Efficacy of two delivery modes of behavioral self-management in severe chronic fatigue syndrome

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By Fred Friedberg et al.

Abstract

Purpose: To assess the efficacy of fatigue self-management for severe chronic fatigue syndrome (CFS).

Methods: This randomized trial enrolled 137 patients with severe CFS. Participants were randomized to one of three conditions: fatigue self-management with web diaries and actigraphs (FSM:ACT); fatigue self-management with less expensive paper diaries and pedometers (FSM:CTR); or an usual care control condition (UC). The primary outcome assessed fatigue severity at 3-month follow-up. Analysis was by intention-to-treat.

Results: At 3-month follow-up, the FSM:CTR condition showed significantly greater reduction in fatigue severity compared to UC (p = .03; d = .58). No significant improvement was found at 12-month follow-up for the FSM:ACT or the FSM:CTR condition as compared to UC (p > .10). The combined active treatment conditions revealed significantly reduced fatigue at 3-month follow-up (p = .03), but not at 12-month follow-up (p = .24) compared to UC. Clinically significant improvements were found for 24–28% of the intervention groups as compared to 9% of the UC group. Attrition at 12-month follow-up was low (< 8%).

Conclusion: Home-based self-management for severe CFS appeared to be less effective in comparison to findings reported for higher functioning groups. Home-based management may be enhanced by remotely delivered interventional feedback.
 
Source: Fred Friedberg, Jenna Adamowicz, Indre Caikauskaite, Viktoria Seva & Anthony Napoli.  Efficacy of two delivery modes of behavioral self-management in severe chronic fatigue syndrome. Fatigue: Biomedicine, Health & Behavior. Volume 4, Issue 3, 2016. DOI: 10.1080/21641846.2016.1205876

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One thought on “Efficacy of two delivery modes of behavioral self-management in severe chronic fatigue syndrome”

  1. Maschelle Mashburn says:

    I’m not sure where this study comes from meaning what country. But I do know that when I was less ill I was able to manage myself bite realizing that could go a certain amount of days and then I would have to rest as I had no choice because I had absolutely collapsed physically and mentally and cannot even remain awake or get myself out of bed without assistance. But as the years went by, my illness progressed to involve more systems. Initially I did not have problems with Reading Writing and speaking. Then I went for a year without being able to read. It was devastating as I have always been an Avid Reader and have a large book collection that I was always adding to. Both nonfiction and fiction as well as antique books where part of my library in progress which I loved sharing with anybody who enjoyed reading and wanted to read something I owned. We all get tired mentally when we’re physically exhausted and it’s much worse with CFS, but that is not the same thing as having neurocognitive symptoms. I can’t tell you how horrifying it is the first time you’re signing your name and suddenly your hand stops and your brain is a blank. You can’t write, you don’t remember the letters you need to make or that they’re even letters. You have nothing to go by and it’s terrifying because you signed your name probably thousands of times. Yet when you tell your doctor this which any rational person would report to their doctor, they literally brush it off. I personally find that to be an alarming thing to happen to somebody! And then there’s the times when you think you’ve written something correctly and you look at it later and realize you’ve written a number instead of a letter right in the middle of a word. It is the hardest thing in the world right now for me to even write a check once a month to pay my rent. It is extremely hard to write the amount first by numerals and then next to write them out as words using letters, in cursive no less! I void several checks before I finally get it right. I could no longer drive because I was falling asleep at the wheel without feeling sleepy at all. I started choking on food and drink when I would fall asleep in the middle of taking a bite of food or a sip of liquid. This is a terrifying disease. I thought I was pacing myself and I had very little choice but to try being a single parent 2 a then Elementary School age child. Nobody besides my children believed me when I tried to say what was happening to me at home as these people only saw me when I was well enough to come out of the apartment. They didn’t see when I couldn’t stand up or had to have help to get out of bed. Nor did anybody realize I slept on the floor on an air mattress because it was easier to crawl to it and to roll over to land on the floor then it was to get into a sitting position in a normal bed.

    13 years later all of my hard work at pacing myself has done me no good that I can see. I am now mostly bedridden and so ill all I can do now is walk to the bathroom and then walk to the kitchen to grab something to drink or previously prepared foods like a yogurt. I can’t sit straight up right anymore at all and I can no longer stand upright for more than a few minutes before I start to feel my muscles tightening up like something desiccating in the Desert Sun and the pain is excruciating. I start to sweat profusely when I move around and as much as I have come to hate my bed I have to get in it before I pass out.

    I’m not even able to hold my arms up enough to fold a couple of towels. My muscles literally give out and then I can’t raise my arms for at least 24 hours and that is very scary.

    I think the bottom line is that we desperately need medical answers to how to treat this disease because pacing even when we’re doing our best to document everything in order to identify the things that bring on post exertional malaise for us eventually backfires on many.

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