The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

News Video: Living with chronic fatigue: Woman struggles with the 'invisible disease'

Discussion in 'General ME/CFS News' started by Bob, Jul 20, 2016.

  1. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,923
    England (south coast)
    A helpful local (New Orleans) news segment interviewing our friend @marygelpi...

    This is a great piece of advocacy. Thanks so much, Mary. :thumbsup:


    Living with chronic fatigue: Woman struggles with the 'invisible disease
    http://www.fox8live.com/clip/125966...ue-woman-struggles-with-the-invisible-disease

    It mentions Mary's very successful petition (see forum thread, here) which demands more ME research funding. It has a massive 38,000 signatures so far, and Mary is aiming to get at least 50,000 signatures...

    Increase Funding For ME/CFS So We Can Find a Cure
    https://www.change.org/p/increase-research-funding-for-me-cfs
     
    Last edited: Jul 20, 2016
  2. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,923
    England (south coast)
    From another thread...
     
    Last edited: Jul 20, 2016
  3. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,547
    Europe
  4. Comet

    Comet I'm Not Imaginary

    Messages:
    658
    Likes:
    3,488
    Thank you @marygelpi. Great interview. So proud of you! :balloons:
     
  5. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,116
    I'm absolutely blown away! What a wonderful video!

    @marygelpi Thanks for all that you have done! Your mother is also such an incredible person. I can feel her pain knowing what her daughter is going through yet all the while going through this herself.

    Best wishes to you both!:hug:
     
    Jennifer J, Dolphin, Comet and 2 others like this.
  6. lnester7

    lnester7 Seven

    Messages:
    2,265
    Likes:
    3,172
    USA
    Try to share and tweet, to insentivate the channel to do more pieces!!!!
     
    Jennifer J and Comet like this.
  7. marygelpi

    marygelpi

    Messages:
    36
    Likes:
    201
    Dudes, thank you, all of you! It was sort of luck that we got the news to do the video. A girl saw the petition on Facebook...she sort of knew of me because we both studied journalism at LSU. She went to my blog and liked it, and the petition really resonated with her. She facbeooked me and said her dad works at the news station, should we try to convince him to do a story? And I was like um YES YES YES duh! So her and I submitted ideas while the petition numbers went up and up, and finally they accepted it and decided to do a segment. It was super exciting, just to be able to finally get some positive exposure on this thing and not just psychiatrists saying some BS about childhood trauma or cognitive behavioral therapy. If someone suggests exercise one more time I might explode. Just kidding I'm peaceful person, really, I am. Hah ANYWAY, thank all of you for your encouragement. I've been trying to post it around just because I think it may have the potential to help people validate that their sick to their friends or family. It's hard to do that with just "Here read this article"...people don't really care, and skepticism is just an easier mindset. Sometimes to see the actual humanity of it, the suffering involved..it can make a difference. And so many people are unlike me, don't have a mother who's also sick and a nurse and understands it all. SO I hope for that reason, it will be to peoples benefit. And to whatever other benefit they can use from it! In the meantime....

    The petition has a new goal of 50,000!! I know, it seems like a lot, but just look how far we've already come. I never thought we'd make it to 38,000...and now we're just 12,000 away from our goal...small potatoes!! (The only reason I changed the number is because after talking to change.org people, they tell me petitions with that number as a minimum are most likely to achieve "victory"..and this change is just too damn important!) But we've got to band together. I think it could be amazing to have that many names behind us by the time that the protests happen in September. There's no actual "cutoff" date for the petition..not in the next 6 months anyway, but I think the sooner the better, and if protesters had a petition posting the support of 50,000 civilians, well..all the more impact. And that's I THINK what most of us are going for. So please please please, help share this dang thing, and you'll be surprised by the people who end up helping or wanting to help. Remember its just asking for names, not money, it takes 30 seconds, and then they've done their good deed for the day :) I am open to ideas as to other means of spreading this thing..but seeing that it's an online petition....social media has been a good friend. But I forget about email AND sending it in group texts! You can send it to entire groups at the office, softball leagues, ok I doubt any of us play softball, but any kinda groups you may have forgotten, send it out, tell your doctor! or the nurse..whoevers nicer :) my doctor ended up sending it to every employee at the hospital-- which was so humbling and a total surprise. So you just never know. Anyway...let's do this! I know we can. I feel like the internet has allowed us to join up and strengthen our force like never before, and this will be the reason that we get things to truly change. OK here's the link again...thank you all for the support and encouragement, and know that I send it right back to you. Health and Happiness and Hi from Monty, -Mary

    https://www.change.org/p/increase-research-funding-for-me-cfs
     
  8. marygelpi

    marygelpi

    Messages:
    36
    Likes:
    201
    :heart: Thank you @Comet!! I feel the love :)
     
    Comet and barbc56 like this.

See more popular forum discussions.

Share This Page