Everyone thank you for the support. Sorry I left right after I spoke with the IDSA. It was a bit intimidating meeting three people in business entire not willing to address themselves. They did seem passionate towards my request.
I informed them that thousands upon thousands suffer with a persistent form of Lyme , people are dying. We ask that they change the guidelines and please look at the science.
They were warm in receiving the documents. One of the ladies looked as if it was breaking her heart so many sick people were. They took the documents and agreed to look over them.
Again I asked them very kindly to please review and change the guidelines that are keeping so many sick. After this we parted ways.
Sorry I didn't stick around for questions, as most of you are exhausted as am I. The heart palps, low bp, anxiety and brain fog got to be too much. I started to feel faint again and needed to head back to my room. Stay positive our foot is in the door. I'll request again tomorrow a meeting after they review our documents. Keep supporting us and come out strong tomorrow. One love.
Josh Cutler
[ 05-23-2014, 02:09 AM: Message edited by: Robin123 ]
Posted by Lymetoo (Member # 743) on :
That's awesome! I think that the members of the IDSA have their hands tied right now. And maybe, just maybe they will decide to UNtie them.
Thank you to everyone who was able to attend and push for change!
Posted by surprise (Member # 34987) on :
Thank you for posting the info- I've been wondering- thanks to all the folks participating-
Posted by Robin123 (Member # 9197) on :
See www.themaydayproject.org for all the suggested supportive activities any of us can engage in with them on Friday as people continue to surround the IDSA headquarters.
Our area went through the history of the two Act-Up groups re AIDS activism in the '80s and '90s and that's what the radio program host is referring to, the comparison between the two illness activisms.
[ 05-23-2014, 03:55 AM: Message edited by: Robin123 ]
Posted by droid1226 (Member # 34930) on :
Ya, Josh got inside and spoke with them today again. They are either appeasing him or a dialogue really has been opened. But he said it was another constructive meeting and that they were very open.
Posted by surprise (Member # 34987) on :
Thanks again for the update, I'm not on FB or other social media.
Posted by Lymetoo (Member # 743) on :
They are being nice, but they may not be the ones in charge. I would guess that the "powers that be" are in control of those guidelines.
Posted by droid1226 (Member # 34930) on :
It's mostly Twitter. But anyone on here should join. You can contribute a lot from your house/bed.
Posted by Robin123 (Member # 9197) on :
Livestream happening now - everyone circling and chanting, some lying down and blocking - go see!!
Posted by droid1226 (Member # 34930) on :
Looks like the event ended - there are videos at the site to watch. There's a large Lyme quilt made up of little squares.
A press guy came and interviewed participants. He tried to get into the building and the IDSA called the police and escorted him out. So much for them talking to the press!
Posted by desertwind (Member # 25256) on :
Thanks for posting this.
Posted by droid1226 (Member # 34930) on :
Idk. Everyone tweeted again that the police were not called, after saying that they were. But they were adamant that they were NOT called. I think it's irrelevant. Fact is, this is not going away and the IDSA doesn't want this next yr. It's going to be 5 x's this size.
Posted by Lymetoo (Member # 743) on :
I would be afraid of talking to the press too, if I were them! Sorry suckers!
Posted by droid1226 (Member # 34930) on :
That is great!
Posted by Robin123 (Member # 9197) on :
Sorry - I was just reporting what I heard about the police coming. I still don't know what happened re their presence.
I watched this reporter interview everyone - he asked good informational questions that had everyone talking about their experience.
Posted by Razzle (Member # 30398) on :
I emailed the IDSA about their outdated Lyme guidelines needing to be updated, asking them to please consider the evidence provided to them regarding chronic borreliosis, and included my story.
I hope they got flooded with similar emails...
Posted by droid1226 (Member # 34930) on :
Understandable Robin, that's what they reported. I just wanted to update and say that they really weren't.
Razzle, thank you...That's exactly what we all need. They are FLOODED with emails, calls, FB posts...It's why they need to hear from even more people. They need to know that at the very least, this is going to happen again next yr in a much larger fashion.
Everyone who has this horrid disease, please speak up now, take advantage of the momentum.
I called and told them they're out of date, that we're going ahead and educating the medical profession, which we are doing in spades now.
A good way to do this is to make it personal, as in tell them YOU, YOUR FAMILY, YOUR FRIENDS, YOUR PETS AND EVERYONE YOU KNOW are now at risk and could get Lyme disease and co-infections.
And don't let up on them - keep talking and give them brochures if you have any.
I discovered when I started making it personal that medical professionals started to listen, with worry!
Posted by poppy (Member # 5355) on :
I wonder if they were just talking to office staff, rather than the current head of IDSA. Can someone tell us who (names, titles) they talked to? The way those professional medical societies work is that the officers change annually, and they are people who actually work at some university or other. They don't actually move to the IDSA office during their terms. Correct me if I am wrong.
Posted by Lymetoo (Member # 743) on :
I'm glad someone had this idea. We should have thought of it long ago. Many years ago they picketed DR S's office but that got nasty.
It's a little touchy when ONE Dr is being targeted.
By going after the IDSA we hit them where it hurts the most.
Posted by droid1226 (Member # 34930) on :
None of them will reveal names of staff either in person or on the phone.
Poppy, ironically I spoke with someone named "Poppi Fields". No joke.
No way that's a real name. Even when Josh Cutler spoke with them, none of them said who they were. Nice of them since we pay them.....
Anyway, it's being heard. That's the point.
That's awesome. Thanks Robin!!!!!!
Posted by Lymetoo (Member # 743) on :
Wow... that's amazing that they would not reveal their names!!
(I'll refrain from further comment on that one! )
Posted by Gratitude (Member # 31314) on :
The Mayday Project responded to the IDSA’s statement issued to Fox 5 news (link to DC Fox newscast above)
When some media outlet/magazine/newspaper does a better job with lyme, it is because there is a lyme connection somewhere in the organization, probably higher up. That is how people get educated, by having personal experience. I am assuming that is the case with Fox.
![[Big Grin]](biggrin.gif)
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