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Open 2022 A Study of COVID, Long COVID, ME, CFS and Post-Exertional Malaise

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Apr 9, 2022.

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  1. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    "Dear Participant,

    Below is a consent form and four sections of a survey for adults 18 years and older who have had COVID-19. The first section measures demographic characteristics. The next set of questions assesses symptoms of Long COVID. The third and fourth sections measure what has been referred to as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Post-Exertional Malaise. The estimated completion time is 30 minutes. We hope that this set of questionnaires will help us better understand some of the Long COVID symptoms as well as those of ME and CFS.

    Thank you,
    Leonard A. Jason, Ph.D.
    Center for Community Research
    DePaul University"

    https://redcap.is.depaul.edu/surveys/?s=8RM33AP373
     
    Andy, Apr 9, 2022
    #1
    DokaGirl, Kalliope, Starlight and 4 others like this.
  2. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    Screenshots of the questions from the third section to "measure what has been referred to as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS)". Click to expand images.

    Screenshot 2022-04-09 at 10.11.14.png Screenshot 2022-04-09 at 10.11.24.png Screenshot 2022-04-09 at 10.11.32.png Screenshot 2022-04-09 at 10.11.40.png Screenshot 2022-04-09 at 10.11.49.png Screenshot 2022-04-09 at 10.12.00.png Screenshot 2022-04-09 at 10.12.07.png
     
    Andy, Apr 9, 2022
    #2
    alktipping, DokaGirl, Starlight and 3 others like this.
  3. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    Screenshots of the questions from the fourth section on PEM. Click to expand images.

    Screenshot 2022-04-09 at 10.10.08.png Screenshot 2022-04-09 at 10.10.20.png Screenshot 2022-04-09 at 10.10.33.png Screenshot 2022-04-09 at 10.10.42.png
     
    Andy, Apr 9, 2022
    #3
    alktipping, DokaGirl, Starlight and 3 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    It looks like you can only participate if you have Long Covid, and the ME stuff is to see if people with long covid also fit an ME diagnosis.
     
    Trish, Apr 9, 2022
    #4
    alktipping, DokaGirl, Peter Trewhitt and 3 others like this.
  5. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    Andy, Apr 9, 2022
    #5
    nick2155, alktipping, DokaGirl and 4 others like this.
  6. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,374
    Location:
    Aotearoa New Zealand
    I'm not sure what this survey going to tell us - that some people develop Long Covid after a Covid-19 infection and some of those with Long Covid meet the the criteria for ME/CFS? I think we know that.

    I mean, by soliciting people online to fill in the survey, we won't know what percentage of people get Long Covid after Covid-19, and we won't know what percentage of people with LC have ME/CFS criteria-compliant Long Covid. Surely the selective retweeting and forwarding will badly skew the selection of respondents?
     
    Hutan, Apr 9, 2022
    #6
    alktipping, DokaGirl, Peter Trewhitt and 1 other person like this.
  7. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    2,138
    Dr Jason is an astute researcher and uses his validated questionnaires to find out if LC puts meet the ME case definition- I am not sure whether we have had this kind of study done by a ME expert as of yet; and the authors who have published about Long-COVID epidemiology may not be familiar with PEM and POTS and the likes. They may have used Chalder scores for their research, and used Fukuda as case definition without understanding the importance of the case definition.

    The importance of doing this is that you can show NIH, scientific bodies, and the funding bodies such as HHS (gov of USA) that there is a need to examine ME and LC side by side.
     
    Milo, Apr 9, 2022
    #7
    alktipping, DokaGirl, Peter Trewhitt and 2 others like this.
  8. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,374
    Location:
    Aotearoa New Zealand
    But, even if we don't care what percentage of people with LC have ME/CFS, and just want to show it is possible for people with LC to meet the criteria for an ME/CFS diagnosis, how do we know that the survey hasn't just attracted people who developed ME/CFS over the past two years from something else?

    The survey asks when the respondent first experienced symptoms from Covid.

    It does not ask when the chronic symptoms started. It does not restrict participation to those who had Covid at least 6 months ago and yet there are a whole lot of questions that ask about symptoms over the past 6 months.

    I think we need to ask for better research than online surveys with bias built in.
     
    Hutan, Apr 9, 2022
    #8
    alktipping, DokaGirl, Mij and 4 others like this.

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