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Were you diagnosed with ME/CFS before or after covid infection?

Discussion in 'General and other signs and symptoms' started by chillier, Jun 26, 2023.

?

Were you diagnosed with ME/CFS before or after a COVID-19 infection?

  1. After presumed COVID-19 infection and I'm a UK resident

    0 vote(s)
    0.0%
  2. Before presumed COVID-19 infection and I'm a UK resident

    8 vote(s)
    42.1%
  3. After presumed COVID-19 infection and I'm not a UK resident

    2 vote(s)
    10.5%
  4. Before presumed COVID-19 infection and I'm not a UK resident

    8 vote(s)
    42.1%
  5. Some other situation

    1 vote(s)
    5.3%
  1. chillier

    chillier Senior Member (Voting Rights)

    Messages:
    188
    Just for curiosity and in light of the fact DecodeME is not picking up so many long covid derived ME/CFS patients to our current knowledge. In the last update I remember I think DecodeME had far fewer than 1000 ME from long covid patients signed up so I'm wondering whether maybe there isn't anybody who fits these criteria on this forum.
     
    Last edited: Jun 26, 2023
    alktipping likes this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    52,407
    Location:
    UK
    To be a bit pedantic, I haven’t had a Covid-19 infection, so although diagnosed over 30 years ago, none of the first 4 options is accurate for me.
     
    Last edited: Jun 26, 2023
    ahimsa, JoanneS, MeSci and 5 others like this.
  3. chillier

    chillier Senior Member (Voting Rights)

    Messages:
    188
    Good point! I suppose I'm hoping the word 'presumed' would do a lot of the heavy lifting and no one would notice.
     
    alktipping, Dolphin and Trish like this.
  4. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
    1,200
    this is not the kind of site that ignores small flaws or any flaws lol also many people here were diagnosed long before covid.
     
    SNT Gatchaman, Arnie Pye and Trish like this.
  5. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,397
    Location:
    Budapest, Hungary
    Also, I'm not officially diagnosed since such a diagnosis is quite difficult to get here in general, it is just not really a thing here. Thus if they ever diagnose me, it will be after my covid infection that I had last year. However, my post-viral symptoms started years before that. But if the poll would you like to find out the number of covid long haulers, then I would be in the wrong group of voters. :)

    Anyway, I think the reason for the low number of pwLC in DecodeME may be that probably not many covid long haulers get that diagnosis even in the UK.
     
  6. chillier

    chillier Senior Member (Voting Rights)

    Messages:
    188
    Myself included I've had ME for something like 13 years and it took me a long time before I found a community (i.e this one) which is actually speaking soberly about ME - it's extremely refreshing.

    Exactly, what I'm really asking is whether there's a single person who actually fits the required criteria for UK ME after covid who also frequents this forum. In my mind if you already have a long covid diagnosis I don't really see why you as a patient would seek out an ME/CFS diagnosis or why a clinician would be inclined to add that diagnosis on top.
     
    Last edited: Jun 27, 2023
    Hutan, alktipping, Wyva and 2 others like this.

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