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Whitney Dafoe Updates

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

  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,234
    Speaking about coming out as having ME/CFS.

    I've been mistreated over having this illness right from the beginning, which probably did a lot of damage to my self esteem and delayed the diagnosis by 10 years.

    My now estranged father is a doctor of internal medicine who does not believe in CFS. Well before I even knew that I had CFS, he told me a story about a nurse who was nearing retirement and according to him, claimed to have CFS because "she just didn't want to work anymore". I don't believe this was a coincidence. He knew I probably met diagnostic criteria but believed it was a psychosocial problem and that I needed to be discouraged from viewing myself as having an illness.

    The long term outcome of illness denial in my case was not a healthy, happy patient as the BPS zealots believe, but someone who suffered a lot more than was necessary and who now deeply hates anything BPS related.
     
    Last edited: Nov 7, 2020
    Sarah, Lidia, Arnie Pye and 42 others like this.
  2. JemPD

    JemPD Senior Member (Voting Rights)

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    3,916
    Very common in UK. At least i have seen many many many accounts of such things.
    So common as to border on being normal, standard treatment, where if you escape abuse it's something to report not the other way around.
    My own experience is similar to @Invisible Woman but not as bad, & i consider myself lucky to have got off so lightly.
    I think people with other illnesses tend to hide it because they dont want to be patronised or thought to be unable to do things - eg passed over for promotions at work, treated like a child who isnt a contributing member of society etc, whereas i hide it unless i must tell, because i fear the abuse that i've experienced before.

    None of it about being ill, all of it about having ME. And compared to what others i know have been through over the yrs, mine is average, not at the bad end of the scale at ll.

    I am so surprised that some people haven't experienced this/heard all the other people who experience such abuse. Pleased, but astonished.
     
    Hutan, EzzieD, alktipping and 16 others like this.
  3. rainy

    rainy Senior Member (Voting Rights)

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    207
    Location:
    Norway
    Shaming, mistreatment, prejudice and abuse has been the defining experience for me of having ME. It has always been a heavier burden to bear than the illness itself, and the illness is already a heavy burden.

    If I were to tell an alien about what having ME is like, I might forget to talk about symptoms, even though the symptoms are so limiting and life destroying, because if someone asked me «what was it like to have ME on earth?» the first thing in my mind are the questions like: Why did people punish me so much for it? Why did it make me unworthy of empathy or trust? Why did they make it seem like it was my fault?...
     
    yannlk, Lidia, Ariel and 23 others like this.
  4. Alis

    Alis Senior Member (Voting Rights)

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    138
    Last edited: Nov 8, 2020
    yannlk, Ariel, Yessica and 8 others like this.
  5. JemPD

    JemPD Senior Member (Voting Rights)

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    3,916
    totally, totally with you on that.
     
    Ariel, MeSci, cfsandmore and 10 others like this.
  6. Kitty

    Kitty Senior Member (Voting Rights)

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    5,051
    Location:
    UK
    I'm one of those who's always surprised – and horrified – by the stories that others tell. I simply haven't experienced this kind of abuse from anyone I know personally.

    It would never occur to me to hide my diagnosis, or to assume that others might need to. I guess that's a definition of privilege, isn't it? I've been struggling to understand why my experience has been so different, but I don't think I have a clear understanding.

    Perhaps it's partly because I'm autistic and engage with people on my own terms. I've lived happily alone since the age of 17, won't put up with toxic influences, and whilst I've had relationships, I've never needed a partner.

    Same with family. Mine was pretty small anyway, but if any of them had gaslit me, I'd have cut ties. My mum, bless her, had all the natural empathy of a petrol pump, and she really didn't get it. But she wasn't a damaging influence; and to be fair, if I didn't have ME, I wouldn't get it either.

    I suppose if you can take family and intimate relationships out of the picture if necessary, you've probably removed a good 80% of the possibility of significant harm? Maybe that's part of my answer. Another part is undoubtedly that I've never had severe ME for more than a few months at a time, so I've never been completely dependent on others.
     
    Yessica, shak8, Sid and 14 others like this.
  7. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,234
    Especially we must focus on the ideology that wants to make disbelief and mistreatment of patients righteous and virtuous.
     
  8. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    1,858
    Last edited by a moderator: Jan 29, 2021
    alktipping, Kitty, Amw66 and 3 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    13,273
    Location:
    London, UK
    I may be wrong but I sense that this may be part of him getting better. He deserves to turn the corner.
     
    Lidia, alktipping, Ariel and 14 others like this.
  10. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    Extremely Severe ME/CFS—A Personal Account

    "A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included."

    A 25-page-long article by Whitney Dafoe, published in the journal Healthcare. You can download it in PDF.


    https://www.mdpi.com/1088982
     
    Louie41, Sarah94, rvallee and 14 others like this.
  11. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    It’s amazing how (intellectually) productive a lot of the severe MECFS patients are. 25 page article by Whitney—another guy wrote a book that was published. I am not severe, but I could not write a book or long article, barely less read one.
     
    Louie41, cfsandmore, Chezboo and 14 others like this.
  12. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,368
    Location:
    Budapest, Hungary
    So I started reading it and although I'm far from being finished, I found this part very interesting about sensory sensitivities.

     
  13. mango

    mango Senior Member (Voting Rights)

    Messages:
    2,505
    I too have read it, the whole article, and I found all of it very interesting, deeply moving.

    (And very very different from my own experience of living with severe sensory sensitivities, completely different to my own coping techniques etc.

    I was kind of hoping it would be the kind of article I could share with others to help them understand my situation a bit better, even though my ME is much less severe than Whitney's. But it's not, our experiences are just too different.

    I'm very grateful that it comes across so clearly in the title already, that it's a personal account and not meant to represent us as a group.)

    So courageous :hug:
     
  14. Perrier

    Perrier Senior Member (Voting Rights)

    Messages:
    788
    I also just read dear Whitney's piece. I became weakened, devastated and crushed as I once again faced the reality of what living with this hell is like. My own daughter daily tells me that I do not understand what she is going through, and she is being accurate and making some kind of plea. But even more troubling: how can the world of research, medicine, government have abandoned so many young people in all corners of the world, and often been so cavalier with them as well. Thanks Whitney for your steadfast courage and profound honesty.
     
    Ariel, Louie41, alktipping and 17 others like this.
  15. MeSci

    MeSci Senior Member (Voting Rights)

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    4,440
    Location:
    Cornwall, UK
    Could someone advise whoever needs to be advised that there is a small error in the document?

    About 3/4 of the way down it says:

    "This happens to be Ronald David’s number one piece of health advice..."

    I.e. 'David' instead of 'Davis'.

    Thanks. I have pretty-well read it all now. Impressive. It would be wonderful if he could escape from the hell he's in and function properly again.
     
    Ariel, Louie41, alktipping and 6 others like this.
  16. wingate

    wingate Senior Member (Voting Rights)

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    135
    I ask the very same question, @Perrier . If accounts like these do not spur these folks to action, what will?

    How much more clearly can this community communicate our suffering and pleas for help?
     
    Ariel, livinglighter, Louie41 and 8 others like this.
  17. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    1,858
    Bad news

     
    Louie41, cfsandmore, Legend and 6 others like this.
  18. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    6,048
    Location:
    UK
    I can't see any pictures or links on your post, @Jaybee00 .
     
    Louie41 and Perrier like this.
  19. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    As Whitney says:

    "I would like to ask you to not speculate about what this drug is or hype it up into more than an experiment and possible treatment. You will never guess what it is and if you did you could do great harm to the availability of the drug by taking it in the wrong way and hurting yourself. Please respect this so I can continue to keep you as informed as possible"

    i can't fault the guy for trying something. Especially, as he's got very knowledgeable people helping him work out what to try and how to try it.

    Even with that level of knowledge and support, it can still go wrong.

    I hope he improves soon.
     
  20. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,858
    This is the one bit of good news

    “I first took a test to see if the drug would work for me which was an overwhelming yes”

    Looks like they found some strong signal/indication.
     
    Last edited: Jul 5, 2021
    Louie41, Legend, MeSci and 4 others like this.

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