New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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New Forum -- Millions Missing Campaign

Discussion in 'Millions Missing Campaign' started by Kina, Jul 19, 2016.

  1. Kina

    Kina

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    Welcome to our newest forum.

    Please post any information related to the #Millions Missing Campaign in this forum.

    We will be moving any existing related threads to this forum over the next few hours or days.

    Thank you for your patience.

    Kina.:)
     
  2. Kina

    Kina

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    Sofa, UK
    If you see any threads I might have missed, please post them here.

    If you believe any threads should be stickied, please post them here.
     
  3. TiredBill

    TiredBill Senior Member

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    I went to the Millions Missing event yesterday in Santa Monica (Los Angeles) with my son William.

    It was very moving to see and meet others afflicted with this dreaded disease and see their caregivers, loved ones, friends, and family who were there for support.

    It was also very impactful to see the shoes and signs for people who were too unwell to be there in person...and to see that they were are not forgotten. I felt blessed to have the strength to attend the event in person.

    I know Jen Brea felt too ill to attend (but gave a great speech via the internet and iPad that I've seen posted) Her husband Omar was among the speakers. Linda Tannenbaum from OMF was among the other speakers.

    I said a few words when the time came for the open mike.

    It was a very moving experience for me in every way. Connecting with others is so important.

    In a moment of brain-fog, I left my fully charged camera in my car. My son (who had just broken his iPhone screen) took a selfie of us. The fractured screen gives the photo a strange quality (but one that somehow works).

    Thanks to all who organized the event. I was very grateful to be part of the day.

    Bill

    [​IMG]
     
    Last edited: May 13, 2018
  4. TiredBill

    TiredBill Senior Member

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    And another from yesterday in Santa Monica.

    [​IMG]
     
  5. Butydoc

    Butydoc President

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    Hi Tiredbill,
    Like you, my wife was there with two of my children with ME/CFS. She also spoke at the open mic. She told me the event was very moving. Hopefully this momentum towards spreading the word will continue to have a impact.
     
  6. TiredBill

    TiredBill Senior Member

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    Your wife was quite eloquent. That this illness has struck your family so repeatedly defies my comprehension.

    I am so sorry. I can handle my own illness, but were it to hit my brother and my children? Not sure I could bear that.

    It was a very moving day.

    Please let your wife know Bill from the event sends you all hugs.


    Bill
     
    Last edited: May 13, 2018
    Countrygirl, Mel9, Sushi and 2 others like this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    I wanted to go to this event in Santa Monica but was not able to attend. It would have been so cool to meet you @TiredBill and also meet your wife @Butydoc. She was so helpful to me in the past re: some questions and I could have thanked her in person.

    I have had the privilege of meeting Linda Tannenbaum at a different event several years ago and she is always an amazing speaker. It looks like a decent turn-out from the picture and I am hoping that I will be able to attend next year. I can tell exactly where the event was from the photo.

    And @TiredBill I totally relate to your son cracking his iPhone screen as this is my step-daughter's specialty LOL. Great photos and thank you for sharing them with us!
     
    Last edited: May 13, 2018
  8. TiredBill

    TiredBill Senior Member

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    I was wondering if you might be there. I'm sorry that you couldn't attend.

    The funny thing about that photo is my son looks fine (nice and crisp), but I (literally) looked brain-fogged.

    Perfect! :rofl:

    The crowd was a little larger than it appeared in the photo. Right there on the 3rd St Promenade.

    It was a powerful experience to connect with so many others with this illness in person and to see many more represented with shoes, signs, and surrogates.

    Not called Millions Missing for nothing.

    Bill
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    I really wanted to but ended up with a conflicting event time-wise and it was impossible.

    I hope you don't mind me saying this (and it is a compliment) but you reminded me of Robin Williams in the photo.

    I think the Promenade on a Sat is the perfect location and you would get thousands of locals and tourists passing the demonstration and wanting to learn more.
     
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