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Open (Online survey) Comparing the Impact of Pain and Fatigue on Function in Post-COVID-19 Syndrome to Fibromyalgia and Chronic Fatigue Syndrome

Discussion in 'Recruitment into current ME/CFS research studies' started by Dolphin, Jun 24, 2021.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,155
    https://redcap.icts.uiowa.edu/redcap/surveys/?s=4RLWF4R389

    Project Title: Comparing the Impact of Pain and Fatigue on Function in Post-COVID-19 Syndrome to Fibromyalgia and Chronic Fatigue Syndrome

    Principal Investigator: Giovanni Berardi


    If you are between the ages of 18 and 80, and have any of the following conditions, including post-COVID-19 syndrome, fibromyalgia, or chronic fatigue syndrome, we invite you to participate in an online survey study being conducted by investigators from The University of Iowa. The purpose of the study is to better understand how pain and fatigue impact daily function in people with post-COVID-19 syndrome, fibromyalgia, and chronic fatigue syndrome.

    If you agree to participate, we would like you to answer some basic questions about yourself, your general health, and if pain and/or fatigue interfere with your day-to-day function. In addition, we will assess your pain experience and psychological status, including depressive symptoms and anxiety. There are several brief surveys that should take a total of approximately 15-20 minutes to complete. You are free to skip any questions that you prefer not to answer.

    If you wish to be entered into a drawing for a $10 e-gift card, you will be asked to provide your email. The probability of winning this e-gift card is 1 out of every 10 people.

    We will not collect your name. It will not be possible to link you to your responses on the survey. We will assign a participant ID number when recording your survey answers which will be tied to your survey responses. You only need to provide your contact information (email) if you want to be included in the gift card drawing and the email address will not be linked to your responses.

    Taking part in this research study is completely voluntary. If you do not wish to participate in this study, simply close your browser and no information will be collected from you. You may choose to stop participating at any time during the survey: however, any responses entered up to that point would be saved anonymously.

    If you have questions about the rights of research subjects, please contact the Human Subjects Office, 105 Hardin Library for the Health Sciences, 600 Newton Rd, The University of Iowa, Iowa City, IA 52242-1098, (319) 335-6564, or e-mail irb@uiowa.edu.

    We encourage you to ask questions. If you have any questions about the research study itself, please contact: Giovanni Berardi, PT, PhD at (319) 481-2119 or giovanni-berardi@uiowa.edu.

    If you wish to participate in this study, simply click "submit" below. Thank you very much for your consideration of this research study.
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    Sean and Peter Trewhitt like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,155
  3. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
    979
    what is the point in collecting purely subjective data . considering there is no formal common language to describe the multiple symptoms each of these syndrome produce .
     
    MEMarge, rvallee, Hutan and 2 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    37,449
    Location:
    UK
    I have done the survey. It's quite easy, though some instructions are in very small print. It asks for a few basics like age, gender, ethnicity, height and weight and medical conditions, then there is quite a long section with tick boxes asking about things mainly to do with pain, fatigue, cognitive function, sleep, anxiety and depression.

    No mention anywhere of PEM, or questions that could elicit a diagnosis of PEM, as far as I recall. I answered the 'fatigue' questions as meaning CFS symtoms in general rather than tiredness/exhaustion. Some questions I found hard to understand what they meant, most were about the last 7 days, and some asked for 'compared with usual' which I took to mean when healthy, but could equally have meant usual with this illness.

    The ones that I found ambigious were those related to enjoyment of activities and social activities etc which were presumably meant to dig out depression, but lack of enjoyment can be as much to do with pain or feeling ill or not being able to participate because of physical symptoms. At least they also asked straight questions like are you depressed.
     
    Last edited: Jun 25, 2021
    Michelle, alktipping, MEMarge and 2 others like this.

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