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

Bob

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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
 
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Bob

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From another thread...
Hey friends,
The local news here in New Orleans aired a five minute segment on ME/CFS, living with the disease, funding issues, and mentioned the petition! woo woo. I am hoping this will just help with exposure and since it is online, it can be shared anywhere. Anyone feel free to use this if it can help with any aspect of life with this illness or if you're care taking for someone, and also...we're going for 50,000 signatures! We're at 38 now, and I Know we can do it. We've come so far. I'll post the segment here if it can be of use to anyone, but pretty exciting that "Chronic Fatigue Syndrome" is being taken seriously in the media (at least in this segment) and that it's receiving long needed exposure. OK, back on the advocacy horse. Let's do this.

Here is the news segment:

http://www.fox8live.com/story/32457045/living-with-chronic-fatigue-woman-struggles-with-the-invisible-disease

And keep on trying to get this thing signed! 50 is the goal, and reaching it will make our voices even louder.

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