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The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample (2020) Jason et al.

Discussion in 'ME/CFS research news' started by ME/CFS Skeptic, Jan 23, 2020.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    article in spanish on the study: quotes Esther Crawley
    https://cambiodigital.com.mx/mosno.php?nota=433197
    https://translate.google.com/translate?hl=en&sl=es&u=https://cambiodigital.com.mx/mosno.php?nota=433197&prev=search
     
    Last edited: Feb 1, 2020
    Invisible Woman likes this.
  3. Channa

    Channa Established Member

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    Thank you Andy! I am not sure I that I will be able to understand it - but it is good that there is an explanation. :)
     
    Last edited by a moderator: Jan 31, 2020
    Michelle, Simon M and Andy like this.
  4. Simon M

    Simon M Senior Member (Voting Rights)

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    A simpler version (not in the paper):
    295/10,000 = 3% of youths screened were possible cases of ME/CFS
    42/165* = 25% of possible cases were diagnosed as actual cases
    3% possible cases X 25% are true cases = 0.75% prevalence

    *Not all of the possible cases went to the clinical assessment
     
  5. Denise

    Denise Senior Member (Voting Rights)

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    Honest question -
    In this day and age is phone sampling the best way to begin epi studies?
    (Given the portability of cell phone #s in the US people may have gotten a phone # when they lived in the Chicago area. But if they are no longer in that area or have access to that area many wouldn't be able to take part and would be even less likely to return a call. Others may blow off any call or voicemail from unknown numbers no matter how well intentioned the caller or message.)
     
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I'm not sure that it has been mentioned in this thread that they did also write to people:

     
    Andy, DokaGirl, Simon M and 8 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    article:
    DePaul researchers unmask misunderstood chronic illness

    full article here
    https://depauliaonline.com/46034/ne...ask-misunderstood-chronic-illness/?print=true
     
    Andy, DokaGirl, Milo and 4 others like this.
  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    rvallee likes this.
  9. Mij

    Mij Senior Member (Voting Rights)

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    How many physicians (cardiologists)/clinics in Canada can properly diagnose the several different variants of dysautonomia? POTS has been around for centuries and has only been well-defined in the last 25 years. This can markedly impair quality of life, especially because it is not widely understood in the medical world.
     
    DokaGirl likes this.
  10. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    It took 6 years for my diagnosis. I first got sick in the 1980's, pre-computer at least for us. There wasn't much out there to access on ME at that time. Once diagnosed, I knew where to look, but until then I consulted practitioners who didn't know either.(Well, they still don't know now!)

    Gradual onset, as @NelliePledge says slows down the realization that what's going on is a global health problem for the individual. It's not just repeated episodes of the flu, other infections, or problems with sleep etc. It's a real, and all encompassing disease.

    As @rvallee said the "cfs" name is misleading and stupid. I spent years trying to find out what was really causing my "cfs", as it had to be something like allergies, heavy metals, chemical exposures, etc. Back then I didn't view "cfs" as a distinct biomedical disease, and neither did many others. (Of course many still don't)
     
    Sid, NelliePledge, Snowdrop and 2 others like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Basically none, about the same situation as with ME, those may as well not exist or the chances of being referred to the right person is almost nil. You can find them, but they are not working with standard guidelines, same as with ME. If you find one that will even listen it's likely because they've had personal experience with it from family or friends.
     
  12. Mij

    Mij Senior Member (Voting Rights)

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    @rvallee there is one excellent doctor in Calgary. I follow him on twitter I believe he is also familiar with ME.
     
  13. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Interesting the CDC would exclude people from an ME diagnosis if they have a positive Romberg test. The Canadian Consensus Criteria (CCC) Overview, page 18: " Tests for Abnormalities in ME/CFS" ... under the subheading"CNS, ANS" includes Romberg test:https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

    From the ME Association:https://www.meassociation.org.uk/20...cfs-symptom-management-part-one-06-july-2017/

    "Dizziness and problems with balance
    Balance problems, which are often described as feelings of unsteadiness (‘walking on rubber’) or being dizzy, rather than actual spinning round or vertigo, are a very common symptom in ME/CFS. They can sometimes be confirmed on a physical examination with tests that are designed to assess balance (a Romberg test) and the Fukuda test for vestibular function (the vestibular apparatus within the ear helps to control balance)." (my bolding of "a Romberg test")


    The CCC and the CDC exclude thyroid disease. However, I wonder how many people with ME also have thyroid disease; as well, how many have just ME, and no other systemic health issues.
     
    Sly Saint, Dolphin and Trish like this.
  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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