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The Mayday Project - lyme awareness month event started today 042915-how you can participate fr home

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Posted 4/30/2015 3:36 AM (GMT 0)
For those who were not able to physically participate in this weeks lyme awareness event in Arlington VA you can show your support and learn more about lyme efforts. You can access a live feed and they also provide videos from the days events. Today there is education about the event and also how the congressional process works. Excellent videos. For those who dont have access to Facebook link that I provide below I hope to find or someone finds a direct link to the livecast.

I personally believe the lymies that spent the money and more importantly spend their energy to be there are encouraged when they here 100's or 100's are following the livecasts. even if you cant watch for extended period login .....strength, validation is in the numbers. we try to support each other here, this is another way to show your support and may be get encouraged yourself.

/www.facebook.com/events/1524051617834268/1589610257945070/

https://www.facebook.com/events/1524051617834268/1589610257945070/
Posted 4/30/2015 4:40 PM (GMT 0)
Yes. Happyjo. I'll be there via net, in spirit, if not in person.

Roxie60, Thank you for this post and information. Yes. I agree that
the people that have organized these events and are there in person need
and appreciate all encouragement and support they can have from the
public and especially fellow Lymies who are watching these videos.
We can also post comments on the FaceBook pages.
Some people put green light bulbs in their porch lights during
Lyme Awareness month. At least I read that people in Europe do this.
It looks like people in Canada are doing the Lyme Challenge.
There are many ways to raise awareness.
Posted 4/30/2015 11:52 PM (GMT 0)
No I have been too sick this year. I was not even able to drive to my llmd apmt last week. That is why im grateful for mayday livecasting. For some reason they did not livecast today hut they have been livecasting the menorial tonight. Ahd they will be livecasting the protest tomorrow.

Tonight people have been remembering those that lost the battle, moving stories.
Posted 4/30/2015 11:55 PM (GMT 0)
You can access the link via their The Mayday Project fb page.
Posted 5/1/2015 1:03 AM (GMT 0)
Thanks for sharing Roxie! I will check it out. :)

I also saw that Sara Barreilles posted on FB today that her friend is putting on a Lyme awareness event this month to spread knowledge regarding a "disease affecting so many." That was great to see!
Posted 5/1/2015 9:32 AM (GMT 0)
I wish I had known about the event earlier. I am right across the bridge from there and (if I had the energy) would have taken a couple of days off work to participate. It's great that people are doing this. Maybe the organizers can spread the word a little more if they do it again next year.
Posted 5/1/2015 10:53 AM (GMT 0)
They have been doing this for 5 years.
Posted 5/1/2015 12:26 PM (GMT 0)
I've been sick for longer than five years but only recently (January/February 2015) realized what has been causing it. I guess these things are invisible when you're not looking for them. I'm not being critical, just suggesting that ongoing, proactive promotion each year before the event would be useful since there are tens to hundreds of thousands of new diagnoses each year, so people who are newly diagnosed in many/most cases won't be aware just because the event has been around for a while. We all know when the Superbowl is coming every year, but it's still incessantly advertised to stir up as much attention as possible.

Anyway, thanks for the info! I'm now following the project on Facebook and will also make a donation.
Posted 5/2/2015 3:27 AM (GMT 0)
Americanlymie, they do promote it each year and it happens at the beginning of each May to kick off Lyme awareness month. There are just some many groups these days trying to make progress but I have been impressed with this one.
Posted 5/2/2015 7:24 PM (GMT 0)
I was just newly diagnosed. What is mayday? Also how can I participate?
Posted 5/3/2015 2:33 AM (GMT 0)
Hi katielyme. The Mayday Project is an organization that focuses on lyme education and to takr steps to get current lyme diagnosis and treatment guidelines changed so people with lyme can get better treatment. They are fact oriented. There are alot of commentaries regarding lyme some not substantiated by fact or science. They understand the current science is out of step with our experiences so they lobby congress to help make progress and fhange gor lyme patients. Each year at start of May they organize activities for lymies and their caregivers to come together tor education, protest the IDSA conference and encourage people to speak with their representatives. Josh Cutler is one of the leaders of the organization that is very grassroots right now with most of the efforts done by people with lyme and thete caregivers. They also have a memorial each and read out the names of tjose that lost their battle to lyme and coinfections.
Posted 5/3/2015 3:02 AM (GMT 0)
Thanks so much! I live in georgia. Do they so may day here? If yes, DO YOU KNOW HOW I SIGN UP? Thanks
Posted 5/3/2015 3:13 AM (GMT 0)
Thank you for the information.
I just wish there was a way of letting people with no lyme know about these events. It seems to me that only the "lyme world" is the one aware of all of these. It is like we have been banned from the media.
If we knew what we know now, most of us would have not been in this position. When I didn't have lyme, I had no clue, no idea, did not know about these events, about lyme being so difficult, about the strugles.... And when I ask everyday people, they have no clue either. Why is it so hard to advertise awareness on the media?
Why are we being ignored and cast away? Aren't there enough lymies to make the government raise an eyebrow?
Or is it that "they" have created the perfect pathogens and tests to keep getting wealthy? Yeah, because we have an " invisible" illness..... How did we get so lucky? I thank God for those good hearted, compasionate doctors and researchers that have found the medicines, protocols to make us feel better.
Why do they keep misleading people by saying that lyme is easily cured? Why don't they recognize most of the co infection? Why do they say that treating a tick bite may be more harmful than lyme itself?
Sorry....just letting some frustrations out... shakehead
Posted 5/3/2015 4:47 AM (GMT 0)
That is ok Elmes.. it is human and we experience all tye stages dealing with tramatic events like anger grief confusion action etc. I do not understand why we are in this battle for recognition but it is not new, over the decades many illnesses have been dismissed. It is sad the suffering that is prolonged due to arrogance and ignorance. All we can do is keep fighting to raise awareness and lobby for change, change just seems to be coming at a snails pace which is infuriating since the losses associated with lyme and coinfections are destroying lives while we wait for the world and medical view of lyme changes.

In the mean time we can educate ourselves and others at every opportunity. We can offer whatever support our current health status allows to others who are taking positive steps gor change. Many times we feel we dan donothing of significance butreaching out to others who are starying this bbewildering journey! To give them hope and encouragement when they are brought low by the disappointments that are a part of tthis journey. We can write our representatives. We can put green ribbons around our trees or green light bulbs in our exterior fixtures to get peoples attention. And when we are able we can pray God to change the minds of those in power creating policies that affect those who are sick.
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