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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Youtube Videos

Discussion in 'Action Alerts and Advocacy' started by Carrigon, Feb 10, 2010.

  1. Carrigon

    Carrigon Senior Member

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    I just wanted to encourage everyone out there who has a webcam to please tell your story on Youtube. Tell people on video how this disease has affected your life. The more stories we post on video, the more we show the world how serious this disease is and that it is a real disabling physical illness.

    There is power in media, there is power in numbers, and there is power in your own voice. People from all over the world watch videos on Youtube. Tell your story. Show them you are bedridden, show them you are stuck in the house. Tell the world all the things you can no longer do because of this disease. Talk about the symptoms.

    The only way we will ever change things in this world is to fight for what we want. We need to fight the stereotypes and the bad press and the horrible name and the psychiatric lobby. You can fight back by telling your story to the world.

    It's not hard to make a Youtube video. Just start talking, tell your story. You can do it from your bed or from a couch. Just do it. Tag it with everything you can think of: CFS/ME, CFIDS, Chronic Fatigue, Fibro, Fibromyalgia, Myalgic, Lyme. Just do it. The more stories we have up there, the more people will listen.

    It's also important that caregivers and family members tell their story, too. If you are a parent of a child with CFIDS/ME, tell your story. It is so important to get these stories out there on video. Video is even more powerful than just a written webpage. Show the world what is really happening with this disease.
  2. Hey Carrigon,

    This is a really good idea. The more people tell their personal stories, the better, especially those with severe illness and with demonstrable physical complaints.
    The more people who see we are sane, normal people with an illness that's more serious than AIDS and is just as physical, the better.

    Rachel xx
  3. Carrigon

    Carrigon Senior Member

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    PA, USA
    It is just so important. The only real way to fight is to show the world the worst cases. They need to see the ones who are bedbound and housebound. A major problem we've had is that only the lesser cases ever make the press. We hear of people who had it mildly and then were able to go back to work part time or go back to school. So people think it's not that bad. We need the real severe cases to start speaking out and showing how bad this is.

    When Brian testified at the CDC hearing, he spoke of how he was going to college. And I said to him, you can't be saying that because then they were acting like his story bored them and he wasn't that bad. I told him it wasn't a criticism of him, it was just that, you can't be showing the CDC a milder case. You have to show them someone who cannot get out of the bed or house. So Brian told me that he later collapsed in the hotel room after testifying. And I said, you needed to show them that. You literally needed to show them that you fall on the floor. And this has been a major problem all along. Only the milder cases have been well enough to go testify or to tell their stories, and when they do, it sounds and looks too mild. We have to get the real severe cases to start speaking out. They can do it from the bed or from a couch. They don't have to sit up or stand up. They don't have to travel. All they have to do is start making those videos. Just tell their stories, show they can't get out of that bed or they can't get out of the house. Show that they need help to be fed because they can't get up and make food. Anything. Just start speaking on video and show the world how bad this really is.
  4. Carrigon

    Carrigon Senior Member

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    Here's another idea, too. Parents of children who are severely afflicted with CFIDS/ME need to start making videos and send them to people in government. Even the most evil, cold hearted Senator might have some compassion for a child severely afflicted. It is certainly worth a try. A video speaks far more than a letter. Show these people how bad it is.

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