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Whitney Dafoe Updates

Discussion in 'General ME/CFS news' started by Samuel, Jun 5, 2019.

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  1. Trish

    Trish Moderator Staff Member

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    52,218
    Location:
    UK
    Open Medicine Foundation

    https://www.omf.ngo/2020/10/05/wishing-whitney-dafoe-a-happy-birthday/

     
    Trish, Oct 6, 2020
    #41
    ahimsa, rvallee and cfsandmore like this.
  2. Samuel

    Samuel Senior Member (Voting Rights)

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    626
    Merged thread

    Awareness Starts With Us

    > All horrific acts in the history of humanity have been done by dehumanizing a group of people.




    note:

    facebook seems to make the page disappear for those not using facebook / who will never use facebook / who cannot use facebook. in addition, s4me seems to show blank space instead of the link for those who don't use js.

    thus, posting the full text here would be good, if it is ok to do. i got the article from @tomkindlon on co-cure but the email encoding introduced glitches like "didn=E2=80=99t". it's ok to edit this post to put the full text in if any moderator wants to.
     
    Last edited by a moderator: Nov 6, 2020
    Samuel, Nov 2, 2020
    #42
    Subtropical Island, JaneL, Joh and 14 others like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,203
     
    Tom Kindlon, Nov 6, 2020
    #43
    EzzieD, Samuel, Mariaba and 5 others like this.
  4. Mij

    Mij Senior Member (Voting Rights)

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    I've never hid my illness and have never gone into great detail about ME only because it's too complicated to explain PEM, not because I feel ashamed or judged. I have been dismissed by one or two doctors because they didn't believe ME was a lifelong illness, they understood PVFS though.

    Comparing it to the experiences of the LGBT community is a bit . . . odd?
     
    Mij, Nov 6, 2020
    #44
    Possibly James May, alktipping, Alton and 3 others like this.
  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,252
    Mij at what age did you get ME/CFS?
     
    Hoopoe, Nov 6, 2020
    #45
    Joh, MEMarge and cfsandmore like this.
  6. Mij

    Mij Senior Member (Voting Rights)

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    29. I hope I didn't offend anyone with my message. I guess comparing it to the LGBT experience made me react.
     
    Mij, Nov 6, 2020
    #46
    alktipping, Alton, Sarah94 and 1 other person like this.
  7. Rain

    Rain Senior Member (Voting Rights)

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    Rain, Nov 6, 2020
    #47
    Ariel, alktipping, EzzieD and 9 others like this.
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Nov 6, 2020
    #48
    EzzieD, Hutan, cfsandmore and 7 others like this.
  9. Mij

    Mij Senior Member (Voting Rights)

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    I don't think the reason that there is little awareness and funding for ME is because we are 'hiding' our illness from friends and family.

    We need a little more perspective here.
     
    Mij, Nov 6, 2020
    #49
    Ariel, alktipping, MEMarge and 3 others like this.
  10. Rain

    Rain Senior Member (Voting Rights)

    Messages:
    180
    Do you truly feel like you can talk about your illness/get as much understanding/support from your surroundlings like a friend with more known/understood illness? Do you feel like you can ask your surroundings to support ME research just as freely as a Cancer patient? MS? Lupus?
     
    Rain, Nov 6, 2020
    #50
    MEMarge, Dr Carrot, Trish and 6 others like this.
  11. Mij

    Mij Senior Member (Voting Rights)

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    Yes I do, and I certainly wouldn't be disowned or made to feel ashamed because I have an illness that is still not well understood. I have never been threatened or felt the need to hide because I'm disabled. No one in my life has ever accused me of choosing to live a 'lifestyle' of ME.

    I am not understanding the comparisons being made between ME and LGBT community experience.
     
    Mij, Nov 6, 2020
    #51
    alktipping, cfsandmore and Alton like this.
  12. Trish

    Trish Moderator Staff Member

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    Location:
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    I think we can each only speak for ourselves. My friends, family and former colleagues all knew/know my diagnosis, but most know very little about it, and I have not helped by trying to 'act normal' back when I was working, and socially, leading to considerable misunderstanding of the level of disability.

    I hate boring people with my symptoms. If they ask how I am, I usually just thank them for asking and say something inane, like 'much the same'.

    Sharing a few good articles on Facebook has helped a bit, though most don't read them.
     
    Trish, Nov 6, 2020
    #52
    alktipping, MEMarge, EzzieD and 11 others like this.
  13. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,314
    @Trish

    I've had several ppl tell me, "I have CFS too, or a friend had it and tried . . . and got better" :emoji_rolling_eyes: Thanks to the stupid name. That would be the main reason for me to avoid mentioning it.
     
    Mij, Nov 6, 2020
    #53
    Ariel, Perrier, alktipping and 6 others like this.
  14. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Patients are definitely hiding, downplaying, not talking about their illness, and it's definitely harming us.

    They are definitely pressured (by people uncomfortable with reality) to just behave normally even when that is not possible.

    Family is definitely telling patients how disappointed they are with them (in a futile attempt to motivate them to try harder to make something out of their lives).
     
    Last edited: Nov 6, 2020
    Hoopoe, Nov 6, 2020
    #54
    LilyHBopp, alktipping, Yessica and 16 others like this.
  15. Trish

    Trish Moderator Staff Member

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    Location:
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    Which is why I've always called it ME when I mention it. Sadly I still get people saying the same 'I had a friend ... ' stories.
     
    Trish, Nov 6, 2020
    #55
    Perrier, alktipping, Yessica and 8 others like this.
  16. Rain

    Rain Senior Member (Voting Rights)

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    Well, as documented above: LGBT/Human Rights veteran Peter Tatchell brought it up without even being encouraged to do so... I think that settles it.
     
    Rain, Nov 6, 2020
    #56
    alktipping, JemPD, MEMarge and 4 others like this.
  17. Mij

    Mij Senior Member (Voting Rights)

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    [refers to a poster who has since deleted their post]

    I am so sorry you experienced this! That is cruel. How common is this?

    I have encountered dismissiveness and "condition your life around it" comments, but I've never been bullied or abused because I was sick or had ME by anyone.
     
    Last edited by a moderator: Nov 10, 2020
    Mij, Nov 6, 2020
    #57
    alktipping, Invisible Woman and cfsandmore like this.
  18. mango

    mango Senior Member (Voting Rights)

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    2,522
    Very, very common.
     
    mango, Nov 6, 2020
    #58
    alktipping, JemPD, lunarainbows and 14 others like this.
  19. Mij

    Mij Senior Member (Voting Rights)

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    8,314
    Are you referring to children or young adults who haven't established themselves yet? If that's the case then the parents are abusive- period.

    I mean, I was an active productive adult before becoming ill, and my family (who know who I am) would not question my illness if I could no longer work or study because of illness.
     
    Mij, Nov 6, 2020
    #59
    alktipping and hinterland like this.
  20. Marky

    Marky Senior Member (Voting Rights)

    Messages:
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    Location:
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    Well I studied at uni and worked, and the first years after disease onset was a nightmare cause many family and friends thought i was mentally unstable

    I know so many who goes through so much prejudice, so you cant generalize your own experience here
     
    Marky, Nov 6, 2020
    #60
    Perrier, alktipping, hinterland and 17 others like this.
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