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Fatigue Management Institute Launches National Fatigue Survey

Discussion in 'General ME/CFS News' started by shrewsbury, Jan 4, 2010.

  1. shrewsbury

    shrewsbury member

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    Karen Rhine <krhine@fit.edu> via Co-Cure Jan 4 10

    Fatigue Management Institute Launches National Fatigue Survey

    MELBOURNE, FLA.—The Fatigue Management Institute of Florida Institute of Technology has launched the National Chronic Fatigue Survey, an internet-based survey of fatigue related to chronic illness. The survey is designed to gather information on the nature and impact of fatigue associated with chronic medical disorders.

    The institute will use survey findings to better describe the experience and severity of fatigue related to chronic medical conditions. This effort is expected to contribute to the development of improved techniques for managing fatigue. The Survey is open to adults with a chronic medical condition and can be completed anonymously. It may be accessed at: http://research.fit.edu/fmi .

    For further information contact Professor Thom Harrell, Florida Tech School of Psychology, at <tharrell@fit.edu>.


    About the Fatigue Management Institute
    The Fatigue Management Institute serves as a focal point for integrating emerging research findings on illness-related fatigue with techniques for day-to-day management of fatigue. The Institute conducts research on fatigue and fatigue management interventions, provides fatigue management training, and disseminates summaries of research findings related to fatigue and its management in chronic medical conditions. The initial report from the National Fatigue Survey will be posted on our Web site in March 2010.

    Karen Rhine
    Assistant Director
    University Communications
    Florida Institute of Technology
    (321) 674-8964
    krhine@fit.edu
  2. Koan

    Koan Be the change.

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    My 2c

    I won't take part in anything I do not fully understand. I don't know what the agenda of the testing institution is and will not be taking part. I'm also very leery about surveys that give any credence to self selected cohorts.

    2c
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    I think maybe I can save them some study money. People with CFS have fatigue to the point it hinders normal activities. Some are so fatigued they can't hold down a job. And some others can't even take care of their household and personal grooming.

    There, no study needed.

    Tina
  4. I will not be participating in this survey. I do not see what has been characterized as fatigue in M.E./XAND as such. Temporary paralysis and/or dysautonomia are not fatigue. Consequently, I believe that 'managing fatigue' surveys are irrelevant to the disease I suffer.
  5. shrewsbury

    shrewsbury member

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    Very valid points Koan. I'll take your 2c before many people's dollars.

    I thought it was good to post the survey so that we are aware ahead of time of what it is.

    It's self-selected cohorts AND it's anonymous over the internet so anyone can fill in anything they please. Do studies like this get any recognition/acceptance?

    ETA: Sorry - slow posting here. Didn't see you bluebird and Tina.

    Tina - perfect

    bluebird - what an interesting perspective. I've always found that the term 'fatigue' is not really representative of how I feel. It's more like my main energy source runs out and all systems slow or even shut down - no longer able to think, move..... I've never liked the idea of non-refreshing sleep either. I sleep very well some nights - but it doesn't cure the disease.
  6. Ty for posting the link to the survey. I just looked at it. I cannot for the life of me see how my religion or income or frame of mind has anything to do with me being ill. I was...more than irritated by the questions on the first page. And the photo by Dorthea Lange? The Great Depression? I am...speechless...


    Wait. I regained my senses. For all who have not gone to the site itself, this is part of what it says there:

    "About The Fatigue Management Institute

    The Fatigue Management Institute is an outgrowth of the fatigue-related research and clinical programs developed in the School of Psychology at the Florida Institute of Technology. "


    This is a psychological assessment. ( I said that.) Maybe they should test me for aggression.
  7. shrewsbury

    shrewsbury member

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    Thanks bluebird. Do you know I skimmed their info and the more info page and none of that sank in at all - and I was looking for it!!?? Arggh this brain at times.

    Ah - a School of Psychology at an Institute of Technology - that's why they're using the internet survey!

    Maybe they should check me for a virus.
  8. Koan

    Koan Be the change.

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    I hadn't looked at the actual survey when I commented before. Their bias is so evident!

    Look at questions 15 and 16. Given the available choices, the only possible answers regarding how emotionally bothered you are by your chronic illness are not at all or quite a lot. Where is "rarely" or "occasionally"? The survey taker is forced to answer "several days" if they feel "down" at all.

    15. Over The Last 2 Weeks, How Often Have You Been Bothered By Feeling Down, Depressed, or Hopeless?

    Not at all
    [​IMG]Several Days
    [​IMG]More Than Half The Days
    [​IMG]Nearly Everyday


    16. Over The Last 2 Weeks, How Often Have You Been Bothered By Having Little Interest Or Pleasure In Doing Things?

    Not at all
    [​IMG]Several Days
    [​IMG]More Than Half The Days
    [​IMG]Nearly Everyday


    Also, "down" and "hopeless" are lumped together so that anyone who feels "down" is ticking off "hopeless". "Down" and "hopeless" seem very different states to me!
    :eek:

    This is how they get the results they want.

    Classic: "Are you still beating your wife?"
  9. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    fatigue related to chronic medical conditions

    Just wanting to point out that this is a questionnaire about chronic fatigue, not chronic fatigue syndrome. But this is also the reason
    WE HATE THE NAME CHRONIC FATIGUE SYNDROME!!!
  10. Thom Harrell

    Thom Harrell Guest

    National Fatigue Survey

    I'd like to thank everyone for their comments. They will be taken into consideration in our future research. I'd also like to clarify a couple of important points that list members raised. I hope this comes across as explanatory rather than defensive. That's certainly my intent. I've personally been dealing with fatigue for fifteen years, and I believe more evidence-based information is really needed, even if it has shortcomings.

    There is a bias to the Survey. The bias is that chronic fatigue is an underexamined and poorly understood physical state, that demonstrates tremendous variability across individuals. I believe we need to begin by examining individual's perceptions and ways of managing their fatigue, which is the reason for the Survey. This has not been done before, and is a significant gap in the scientific literature on chronic fatigue. In other words, I'm starting by asking rather than telling. The agenda is really to develop a national database of information about the extent and severity of chronic fatigue, and how individuals are managing it. Each of us know our own experience, but we have no real information on the overall population of individuals with chronic fatigue.

    Self-selected cohorts are certainly not perfect, but as there is no national registry of individuals who experience chronic fatigue, any randomly selected group of individuals drawn from a specific setting is also inherently nonrepresentative. This type of research is just difficult, and that's part of why we know so little. In all disseminated or published research from the Survey, the method of collecting data and other limitations will be clearly noted. At the end of the Survey you can let us know if you'd like to be notified when we post results from the Survey. There is no reasonable way to conduct an internet-based survey that's not anonymous. If it were not, then we would have to obtain written informed consent, which would have to be witnessed by another person, and I think we all know how few people would respond under those conditions. It's true that participants can endorse anything, whether it's true of them or not - but that's the case in any type of self-report research, or when one fills out any type of form. It's just another limitation of the research we have to acknowledge. I have conducted some research with rheumatoid arthritis patients where we were able to observe and rate physical capabilities that participants had self-reported. The self-reports were highly correlated with observed capabilities, and that's consistent with other research on self-report versus observation. So there's some evidence to indicate that self-report of health-related issues is consistent with actual health status in the majority of people.

    I don't see how certain demographic factors are related to fatigue either. But as a researcher I reframe that to "I need to examine whether those factors are related to fatigue." For example, it's "believed" that more women experience chronic fatigue than men. I hope to determine whether or not gender is a factor with data, rather than making a conclusion based on speculation or a couple of peoples experience.

    Yes, there are restricted choices on many of the items. That's one of the ways we attempt to standardize the information into meaningful categories. However, some items have "other" options, and there is a completely open-ended question at the end of the Survey where comments can be made, and participants can indicate the ways some questions were not relevant or did not provide the option that best applied to their circumstances.

    For those of you who are willing the give the Survey a try, there are quite a few questions toward the end that ask about your experience with treatment and the methods you have developed to manage your fatigue on a daily basis. There is absolutely zero data on these questions, and this type of information could be valuable in developing better methods for treatment and self-management of chronic fatigue. Every respondent makes the Survey more representative and increases its utility. I encourage you to participate, and then indicate your concerns and reservations in the comments section.

    Sorry about the length of the post, but I did want to respond comprehensively to the concerns raised. Best regards,

    Thom Harrell
    Director, Fatigue Management Institute

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