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youtuber: Have you been misled...? // What is PACE? // Medical Scandal

Discussion in 'General ME/CFS News' started by Esther12, May 7, 2018.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    Just saw this had picked up 4k views in the first hour, so thought it was worth mentioning:



    Looks like the creator is mainly a fashion vlogger, and she has a connective tissue disorder, pain, fatigue and hearing difficulties. This is her description of the vid:

    I've not watched it yet, but it's good to have word of the PACE scandal reaching different audiences and it looks like she was linking to decent stuff. Thanks to @Jenny TipsforME who seems to have prompted it.

    This was also her in the Guardian: "People accept that I’m gay, but not that I’m disabled"

    https://www.theguardian.com/lifeand...e-accept-that-im-gay-but-not-that-im-disabled
     
    MEMarge, Sean, Yessica and 30 others like this.
  2. Andy

    Andy Committee Member & Outreach

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    In my opinion it covers it pretty well, and will be useful in spreading the word to people who might not otherwise hear about it.
     
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  3. andypants

    andypants Senior Member (Voting Rights)

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    I couldn’t watch the whole thing (exhausted) but it came across as casual and approachable for people who are new to this issue, while still giving a fair picture of the controversy and how it feels to be a very sick person not being heard or taken seriously in the midst of it all.
     
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  4. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Ah! I still tell people about that article when discussing the stigma of chronic illness because I thought it was such an interesting read.

    Good video!! She has over 200.000 subscribers, so definitely a good way to raise more awareness.
     
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  5. Barry

    Barry Senior Member (Voting Rights)

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    Hopefully a sign of exponential growth here ... the more the word spreads to wider and wider audiences, the faster and faster it will spread ...
     
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  6. alktipping

    alktipping Senior Member (Voting Rights)

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    its nice that she shows not all people with chronic health problems are miserable and unapproachable , I would be a very bad advocate for us simply because I tend to be very angry swear often/way to often but this illness is way to hard to deal with without obnoxious people trying to control the narrative with their ridiculous philosophies based on their arrogant misperception of other peoples motivations . its the same kind of reasoning when you hear idiots talking about homeless beggars all being secretly rich and getting silly sums of money based on one beggar having one good day .
     
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  7. Webdog

    Webdog Senior Member (Voting Rights)

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    Over 10,000 views. :eek:
     
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  8. Allele

    Allele Senior Member (Voting Rights)

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    She's fabulous! Smart, funny and a great advocate. Thanks for posting, Esther.
     
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    Over 18k... I know that in the grand scheme of things it's still not a lot, but it's also fun watching how these alternative networks can allow information to spread without the approval of the UK Establishment.
     
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  10. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    An articulate account by Jessica Kellgren-Fozard (who has almost ¼ million subscribers on youtube), of being diagnosed with ME, put into a psych hospital with suspected anorexia, and put through CBT and GET at the Bristol centre thanks to PACE.

    The video focuses on a description and discussion of PACE including the various issues, the reanalysis, and the COI. It's about 20 minutes long.

     
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  11. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Thanks for this link. I saw the video a few days ago but only watched half of it. Liked her style, and wanted to watch the rest. :)
     
  12. Adrian

    Adrian Administrator Staff Member

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    I like the video. There are a few issues with the details she describes around PACE but the overall narrative is good.
     
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  13. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I enjoyed watching it twice though
     
  14. Jenny TipsforME

    Jenny TipsforME Senior Member (Voting Rights)

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    Now nearly 30,000 views :thumbup:

    I didn’t prompt it explicitly actually but I have contact with Jessica on the various social media, and I think it might have been prompted by my blog post in some way https://tipsforme.wordpress.com/2016/05/27/paralysis-and-pace/ which she links to (or any of my other grumblings about PACE). Though as someone who has a ME diagnosis I’m pretty sure I didn’t introduce her to these problems. She has issues with paralysis too, though hers seem to be nerve based (mine seem to be Atypical Periodic Paralysis).

    I have a lot in common with Jessica and I first came across her on a vintage hair tutorial video. I’m into vintage fashion too, it’s a nice distraction from serious disability advocacy stuff. Her videos are on a range of topics, though these happen to all be relevant to my life (vintage style, chronic illness, disability advocacy, same sex marriage, dogs). Presumably most of her 250,000 YouTube followers aren’t in this very specific niche of overlapping interests so she’s in a good position to informally educate her viewers on different aspects of her experiences.

    Yes she’s very cheerful generally which is much more engaging (though she’s not too proud to show a crash and associated low mood on video, so over time her viewers do get a sense of the fluctuations, it’s not all immaculate makeup and smiles).

    This is a good summary. She seems to have had a somewhat similar experience to Bob unfortunately. We really need to end this!

    In my opinion it’s a direct consequence of the psychosocial approach: if ME is down to psychosocial factors such as false illness beliefs, then any sign of seeming very unwell is either psychiatric or a repercussion of psychiatric issues. It doesn’t cross medics’ minds that people with ME can look very thin because we have physical trouble turning food into energy, lacking the energy to digest in order to create more energy. Therefore we must have stopped eating.:mad:
     
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  15. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Beyond her engaging personality, the other big draw for me was aesthetic, her sense of style: the colour of the carpet / her hair / lipstick / eyes in contrast with her pillow / sweater, really made her face 'pop' - I found myself more entranced by that visual than the verbiage.
     
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  16. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I liked the style as well ...Bizarrely it also reminded me a bit of max headroom ....that might be just me :unsure:
     
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  17. NelliePledge

    NelliePledge Moderator Staff Member

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    i thought it was good too very accessible and not politics-ish or science-ish which could be offputting to mainstream readers
     
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  18. Andy

    Andy Committee Member & Outreach

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    A new video on ME from her.
     
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  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    The first video has over 52k views now. Go vloggers!
     
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    liked it until the very end with the 'advert' for AfME
     

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