Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME: The Hidden Truth - A New Advocacy Film Asking For Participation

Discussion in 'Advocacy Projects' started by shannah, Jan 27, 2016.

  1. shannah

    shannah Senior Member

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    Hi Everyone,

    I'm posting on behalf of a woman by the name of Kara Spencer who has severe ME. She has been working on making an advocacy film for ME. Until today, I'm not sure I've ever heard of this project before.

    A trailer was just posted today and it is excellent. It can be viewed here.

    http://www.methehiddentruth.com/#!trailers-and-gallery/c1n8o

    Myalgic Encephalomyelitis
    Not Medically Unexplained
    Medically Ignored

    A write up about the film can be viewed here.

    http://www.methehiddentruth.com/#!about/c2344

    She has an appeal out on FB and is asking for participation (photos) from others who are ill. I'm posting here with the hopes that others can help. Here is what she writes:

    "WE ARE GETTING THERE!

    Can you donate any photos for use in the documentary? We need more photos of Severe ME patients for the opening montage!

    I've had a relapse... in November, and I've just been in hospital for an admission to prevent full blown sepsis. I've developed oxygen saturation problems, immune compromising problems, I'm being investigated for adrenal insufficiency, my kidney problems have increased and I've become weaker.

    Of course, all this is good for the documentary at least and has been filmed at every stage. After so much time, it finally feels like I can see the light at the end of the tunnel with the documentary. I've almost got enough footage and will stop filming in April to focus solely on editing. That is the hardest part. But I'm getting there!

    I am now working on with earnest to get the opening montage done, which I wanted to leave until I'd gathered a lot of footage. This is where I plea for you to help. In order to demonstrate the number of us out there with such severity, I need more than my face in this montage and throughout the whole thing. What I'm really after is photos of Severe ME patients, at their worst.

    Its a brave thing to share such a thing. I understand that this might not be something everyone wants to do. But this film is intended for medical health professionals, to help them understand how to work and interact with severe patients, as their needs are so complex and unique to anything they've ever seen before.

    I would be honoured if you were able to send me your photos for use in the documentary montage, which I could send to you before you finally agree and can take it out if we need to. The address you need to send it to is kjsapplications@hotmail.com

    If that fails, you can always send to my inbox on Facebook at.

    Myalgic Encephalomyelitis: The Hidden Truth Documentary
    https://www.facebook.com/METhehiddentruthdocumentary/

    Thank you so much for your unfailing support despite the long wait for this documentary. I am getting there, and with your help I am sure I will be able to overcome the final hurdles. "

    Many thanks, Kara x
     
  2. shannah

    shannah Senior Member

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    The same trailer can be viewed on Youtube where there's a few additional thoughts expressed about the film underneath. Comments are enabled and I'm sure feedback would be welcomed and very much appreciated.

     
  3. taniaaust1

    taniaaust1

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    umm I should have a few photos of me in hospital at various times due to my ME/POTS collapses.. if only I an work out how to get them off the phone and onto here.
     
  4. shannah

    shannah Senior Member

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    It would be best @taniaaust1 if you could email them directly to Kara at kjsapplications@hotmail.com

    I don't have any of the latest gatchets @taniaaust1 so I'm not sure how you would use your phone to do that. I know when I email on my desktop, there is a button at the bottom of the email called "Attach" that I can press and can attach photos to the email before I hit "Send". Perhaps the email program on your phone works similarly.

    Either way, do not stress yourself about it. If it is not straightforward for you, leave it. Your kind gesture while being so ill yourself is very much appreciated. :heart: I know how difficult the easiest of things can become so I totally understand. I'm sure Kara does as well.

    I spent days last week trying to reconcile a simple math problem involving milligrams and grams. I knew I kept coming up with an incorrect answer that made no sense whatsoever. Before becoming ill, I was an industrial accountant yet I could not figure out exactly where it was that I was going wrong nor how to arrive at the accurate solution. It drove me crazy for days!

    Yet one more humbling experience to add to the mountain! :)
     
  5. shannah

    shannah Senior Member

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    The opening montage for the film has been posted.

     
    mango, GreyOwl, taniaaust1 and 4 others like this.
  6. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
  7. taniaaust1

    taniaaust1

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    The opening for the film has made me cry. Its good to see this illness more actually portrayed. Well done.
     
  8. taniaaust1

    taniaaust1

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    I don't even know how to plug my phone into my computer.. where it goes or what connection it needs. Hence photos have sat on my phone for over 2 years now. Kara is doing an amazing job to put together something like that...
     
  9. shannah

    shannah Senior Member

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    I know some phones have email programs on them and you can email from the phone itself.

    Other than that, if you would need to use your computer to email, I would think @taniaaust1 that there would be a cord to attach the phone to the computer or perhaps some sort of card inside your phone that could be inserted into your computer but I'm just guessing. I'm sorry I really don't know and don't have access right now to anyone who might be able to help.

    Unless someone swings by and kindly posts instructions, please don't fret about it.
     
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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  11. slysaint

    slysaint Senior Member

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    don't mean to criticise but not sure about the spelling of myalgic encephalomyelitis at the end?
     

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