Well-known, famous people with ME/CFS (public thread)

Discussion in 'General ME/CFS discussion' started by Hutan, Feb 1, 2023.

  1. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,059
    Location:
    Aotearoa New Zealand
    Peter Trewhitt, Trish and Ash like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,703
    Ash, Hutan, Sean and 2 others like this.
  3. lycaena

    lycaena Senior Member (Voting Rights)

    Messages:
    205
    Location:
    Germany
    Natalie Grams, German doctor with longcovid/ ME/CFS https://www.s4me.info/threads/well-...d-19-and-long-covid.14344/page-14#post-540796

    She wrote (dictated) a book: Entschuldigen Sie bitte, dass ich störe, aber wir müssen über Long Covid und Me/Cfs reden: Aufklärungsbuch einer betroffenen Ärztin

    "I apologise for interrupting, but we need to talk about Long Covid and Me/Cfs: Educational book by a sick doctor"
    (I apologise for the poor translation) There ist also an audiobook available.

    https://www.thalia.de/shop/home/artikeldetails/A1072627515


    Automatic translation with deepl:

    "The motto of the new book by Dr Natalie Grams is "Clearing up instead of talking down".

    What is no longer possible: working, following a conversation with more than two people, leaving the house without a walker, looking after the children, typing an e-mail, cycling or driving, following the news, hurrying, being taken seriously.


    What else is possible: lying in bed with your eyes closed and dictating a book. About Long COVID and ME/CFS - and why we should all learn to better assess these diseases.

    Natalie Grams, herself a doctor, describes the dramatic loss of her normal life due to Long COVID and the resulting ME/CFS. In a scientifically sound and entertaining way, she explains what is needed now to finally bring about change for the ever-increasing number of people affected.


    A book for sufferers & relatives, doctors & therapists, experts & politicians - and anyone who no longer wants to talk down the issue.


    Fine situational comedy and touching authenticity run through this book, so
    that despite all the tragedy, readers can't help but smile."
     
    Last edited: Oct 13, 2024
    Ash, bobbler, MeSci and 7 others like this.
  4. Wits_End

    Wits_End Senior Member (Voting Rights)

    Messages:
    1,387
    Location:
    UK London
    Last edited by a moderator: Oct 14, 2024
    MeSci, bobbler, Sean and 1 other person like this.
  5. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    9,412
    From musician Shaun Ross:

    I’ve gotten a lot of comments about weight gain etc and I’m fine with my appearance, but unfortunately others think otherwise. Here is my story on how I got POTS from Long Covid this isn’t a sympathy post. I just wanted to share some knowledge on my life and how it’s been since dysautonomia
    https://twitter.com/user/status/1845818851025686792
     
    Ash, MeSci, Binkie4 and 2 others like this.
  6. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    5,657
    Location:
    Aotearoa New Zealand
    Demonstrating more medical knowledge and insight than the majority of practicing doctors.
     
  7. Wits_End

    Wits_End Senior Member (Voting Rights)

    Messages:
    1,387
    Location:
    UK London
    She's written a book in which she discusses it, I think.
     
    Peter Trewhitt likes this.
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    4,036
    Wits_End and Hutan like this.
  9. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    512
    upload_2024-10-20_18-52-11.png

    Solange Knowles, Beyonce's sister, posted this on instagram in response to Shaun's post. She has a diagnosis of POTS Sjogren's and MCAS.
     
    Mij, bobbler, mango and 3 others like this.
  10. Ash

    Ash Senior Member (Voting Rights)

    Messages:
    1,605
    Location:
    UK
    I watched the whole video. It was really good right up until the last couple of minutes.

    Taking us through the journey of feeling healthy to feeling sick, so relatable and interesting.

    Then dealing with fat phobia and in response explaining beautifully how the human body exists and changes.

    Unfortunately it all went wrong at the point where “sometimes it’s just mind over matter” came in, along with comments about people making their condition “their whole identity”.

    Having said people never know what others are going through, it would have been better I think not throw others under the bus on account of perceiving them to be handling their illness in an inferior fashion.
     
    Last edited: Oct 20, 2024 at 7:33 PM
    Mij, bobbler, mango and 5 others like this.
  11. Ash

    Ash Senior Member (Voting Rights)

    Messages:
    1,605
    Location:
    UK
    TBF though, it is terrifying to look at people for whom the illness, that you also have, has come to dominate their whole lives and interests, when you’re fresh to the subject and worried about your own life and will being totally consumed by sickness. Likely wanna maintain your pre illness mindset, if nothing else.
     
    Tia, rvallee, Mij and 3 others like this.
  12. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    9,412
    I didn't really read it that way though. I felt that he was trying to lift himself during a stressful time of dealing with a chronic illness. I was 'miss positive' during the earlier years of illness and it kind of back fired on me, everyone was happy I was so positive but missed the fact that I was unable to walk or stand up for very long for 5.5 years. Sometimes family and friends put pressure when not intentional for you to feel ok.

    I understand why you interpreted it that way considering how people with chronic illnesses are dismissed.
     
    bobbler, SNT Gatchaman, Hutan and 4 others like this.

Share This Page