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My family of MEEPS and thoughts on COVID long-haulers

Discussion in 'Epidemics (including Covid-19)' started by Helene, Oct 17, 2020.

  1. Helene

    Helene Established Member

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    A brave & thoughtful story my daughter Nadine wrote about her recent diagnosis with ME, my family's history with the disease, COVID long-haulers and how it's time to start paying attention to those who suffer from chronic illnesses we don't yet understand.

    "How did my siblings and I collapse like dominoes? How could we lose so much freedom and independence, so quickly? Our story doesn’t fit the narrative of how young, healthy people get sick and how they recover."

    This opinion piece ran in a Canadian national newspaper -

    https://www.theglobeandmail.com/opi...ss-i-know-what-the-covid-19-long-haulers-are/
     
    Last edited: Oct 17, 2020
    ScottTriGuy, inox, Michelle and 31 others like this.
  2. wingate

    wingate Established Member (Voting Rights)

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    Thank you for sharing, and of course, thanks to your daughter for telling your family's story. She is a talented writer.

    Many parts resonated with me, particularly the parts about having been so active before getting sick in contrast with my life right now.

    I am so sorry there are so many of you sick in one family.
     
    alktipping, Hutan, rvallee and 11 others like this.
  3. dreampop

    dreampop Senior Member (Voting Rights)

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    MEEPs? I don't know that word.

    Interesting to read, the illness seemed to hit at the two peaks discussed on this forum - mid-late teens and early-mid thirties. I would have to think a geneticist studying the disease must be interested in a family in which 4! persons have this illness severely. I do often see it is the mother as well, the more likely parent. ALthough, I have heard of fathers and sons as well. (this may be reflective of women having the illness more often than men).

    It staggers me that I hear of so many families with multiple members ill, and we can find no genetic clue.
     
    Wits_End, Alton, Hutan and 12 others like this.
  4. Trish

    Trish Moderator Staff Member

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    Thank you. Excellent article. So sorry so many of your family are sick.
     
    alktipping, Hutan, Helene and 9 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    This was very well written. Thanks for sharing the article @Helene and many thanks to your daughter for writing it. All my best to you and your family :heart:
     
    alktipping, Hutan, Helene and 8 others like this.
  6. Kitty

    Kitty Senior Member (Voting Rights)

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    "We want the satisfaction of closure."

    This really gets to the heart of attitudes towards people with ME.

    Lovely article by Nadine, thank you so much for posting.
     
    alktipping, Hutan, rvallee and 6 others like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Hehe I use it sometimes too. ME + peeps. Peeps maybe means something else in different cultures but here it means friends. Wassup my peeps?
     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    This was a great article. Many thanks to your daughter for writing it and being well-informed of the situation in Canada. It's really sad that last year's announcements did nothing for us, which in turn removed some of the only people who know what's going on from being part of the solution with Long Covid.

    For those outside of Canada, the Globe and Mail is one of the most widely circulated English language newspapers here.
     
    MEMarge, Snowdrop, andypants and 4 others like this.
  9. Hutan

    Hutan Moderator Staff Member

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    Others have said it already, but I also want to say that this is a terrific article, one I would like all health professionals to read. Thanks Nadine.

    I wish there was more attention paid to families with multiple ME cases. I can't help but feel that some careful Dr House-like investigations of these families could produce some clues.
     
    Wits_End, MEMarge, merylg and 6 others like this.
  10. Helene

    Helene Established Member

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    Thanks dreampop.
    Yes, definitely. Interestingly, or more accurately sadly, my older daughter's ME started at the same age as I did and Nadine 2 years earlier. My son became ill at 15 and my brother, who isn't mentioned in the article, in his early 20's.

    Dr Alain Moreau's team at the University of Montreal, Canada took saliva samples of my extended family of 30 people a couple of years ago. At that time Nadine & Hanna were healthy so they redid the sampling recently for my direct family to see if they can determine changes in RNA in their samples. We haven't seen any results yet.

    My brother with ME has 3 daughters in their late teens and early twenties. So far so good!

    Agreed!
     
    alktipping, Michelle, MEMarge and 6 others like this.
  11. Wonko

    Wonko Senior Member (Voting Rights)

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    It may be a very good article, but the idea of a roadrunner with ME is 'disconcerting'.
     
    alktipping likes this.
  12. Kitty

    Kitty Senior Member (Voting Rights)

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    Interesting! My perception of usage in the UK is that 'peeps' often means members of an identifiable group, without implying that they necessarily know or are in direct contact with each another. The ME community's a good example.
     
    alktipping, rvallee, MEMarge and 2 others like this.
  13. Helene

    Helene Established Member

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    Thank you rvallee and to all the other kind commenters. I have to admit I posted the article here with some trepidation thinking it might be torn to threads. Will pass your comments on to Nadine.
    I'll take a teeny bit of credit for the facts as her ahem "research assistant"
    So asking from the above mentioned role, can you please explain?
     
    alktipping, rvallee, MEMarge and 6 others like this.
  14. Helene

    Helene Established Member

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    I'd seen the term used a few times and it caught my eye. After spending some time unsuccessfully trying to figure out what the letters stood for a while ago I asked my 30-something year old son who gave me an explanation that meshes with both rvallee's & Kitty's.
     
    alktipping, rvallee, MEMarge and 2 others like this.
  15. Helene

    Helene Established Member

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    Thanks Hutan. Another aspect of multiple members of a family becoming ill with ME is that being aware of the symptoms and presentation of ME results in a much earlier diagnosis and an opportunity for researchers to study the earliest stages.

    When Nadine and Hanna became ill I reached out to researchers in the US & Europe to see if anyone was interested in studying & tracking people from the first months of ME as this may have shown early biological processes. Technically they didn't meet the 6-month duration criteria for ME but it was darn obvious what they had due to PEM. Although there was some interest the timing just at the beginning of COVID-19 was unfortunate and nothing was done.

    It does looks like this kind of research is now being carried out with COVID-19 patients though.
     
  16. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Am I the only person who can't read this article as it's behind a paywall??
     
    NelliePledge and Kitty like this.
  17. Wonko

    Wonko Senior Member (Voting Rights)

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    It's not paywalled here, I'm in the disunited kingdom.
     
    alktipping, Simbindi, MEMarge and 3 others like this.
  18. Kitty

    Kitty Senior Member (Voting Rights)

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    I've just checked again, and the link in @Helene's original post now works differently. I'd have to create a free account or log in via Facebook or Google to read the article; when I first looked at it earlier today, I was able to access it directly. :confused:
     
    alktipping and MEMarge like this.
  19. Wonko

    Wonko Senior Member (Voting Rights)

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    Might be a number of views thing, still no issues here, although the check i just did was on my phone, not being currently able to go vertical enough to use my pc.
     
    alktipping and Kitty like this.
  20. Helene

    Helene Established Member

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    Think it may have been briefly behind a paywall. As well the Globe and Mail does have a monthly limit to free articles so could also be clicking on it a few times.

    Try clicking on the link in the original post and opening in an Incognito or Private Browsing window. Let me know if it doesn't work?
     
    alktipping, MEMarge and Kitty like this.

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