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M.E. and me (My Story as a Teen with ME/CFS) - Youtube Channel

Discussion in 'Advocacy Projects and Campaigns' started by RoseE, Aug 18, 2022.

  1. RoseE

    RoseE Senior Member (Voting Rights)

    Leanne has prepared some content for her Youtube channel that might be useful for sharing with other young people adjusting to life with ME/CFS.

    I have watched half of one, and it seemed well-balanced and accurate. I wondered if anyone had time to review all the videos?

    Link to channel: ME and me - YouTube
    DokaGirl and Peter Trewhitt like this.
  2. MeSci

    MeSci Senior Member (Voting Rights)

    Cornwall, UK
    I watched the linked one until she started going on about 'God'!

    (Apologies to others who believe)
    RoseE, serendipity, bobbler and 5 others like this.
  3. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    I watched the linked video. It's often difficult when a young person with ME/CFS puts themselves into the media, wanting to help others. It takes a while to understand the politics of the illness, and to avoid the many possible pitfalls.

    One problem is that the high achiever who gets ME/CFS becomes the high achieving person with ME/CFS. Whereas the bumbling underachiever is just trying to get through the day, the high achiever (and their high achieving support system) is able to make you tube videos while looking well-groomed and engaging in high quality craft making, working as an online maths tutor, having fun with the family shitsu etc.

    The result is that the stories can come across as the ME/CFS stereotype of people whose ambitions exceed their abilities; being sick can easily be mis-interpreted as a way of getting attention. I'm not at all saying that that stereotype is accurate, but when the 'this is my story' videos are mostly made by high-achieving people who tell us that they had put themselves under "immense pressure and stress" prior to developing ME/CFS, and seem to want a way to show the world that they are still achieving, just in a different, better and more balanced way, it does skew the representation of people with ME/CFS a lot.

    In wanting to put a positive spin on the illness, in talking about blessings and lessons learned, the result is a video that downplays the awful impact of ME/CFS.

    I personally found the way religion was talked about off-putting. For example, "I am so grateful that God blessed me with a loving Christian family who encourage and stand up for me through thick and thin". What difference does it make that the family is Christian? Would a loving Hindu family still be useful? Or a loving atheist family?

    So, I don't think it is a good idea to promote the video; I actually think it has the potential to cause harm.

    I'm still grateful that this young woman wants to advocate for ME/CFS. I don't want to be patronising or dismissive; we do need the high achieving people with ME/CFS and their high achieving families. I hope that this young woman can take some time to just live with the illness and be in ME/CFS communities for a while to develop her ideas and think about what messages are likely to be most effective before she makes more videos.
    Last edited: Aug 19, 2022
    RoseE, Colette, MeSci and 12 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    I've watched a couple of the other ones with the highest number of views.

    This one
    What is ME/CFS? (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome)

    is OK; fairly straightforward explanation as per many others available. references CDC diagnosis.

    the other one with most views is this one

    Difference between Fatigue and Chronic Fatigue (in ME)
    I understand what she is trying to explain but unfortunately it can reinforce the impression that 'chronic fatigue' is ME.
    Last edited: Aug 19, 2022

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