posted
I sure hope more people are coming than have signed up so far. This needs to be a big splash. Surely in a lyme endemic area like that there are plenty of people who could give this a couple of hours.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Sorry this may make you people mad,BUT another rally isnt going to do anything.We need a stronger approach. If lyme can be found in a darkfield microscope,it shouldnt be that hard to diagnos.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
8man12,
There is more than just a rally. The rally is part of a much larger effort.
Have you heard of the CT Attorney General investigation of IDSA? That didn't just happen. People worked for that to happen.
The rally is one part of a larger strategy that national advocates are putting together. The CT investigation is proof that they are making progress.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I understand where you are coming from 8man. However, bringing this home to Wormser in a public and embarrassing way is a good idea. For one thing, his home institution is not going to like adverse publicity for their medical services. If universities and medical institutions did not provide cushy and safe harbors for bad science, we would not be in this fix.
These days such places are running on a profit basis and hungry for money, will take it from wherever it is available, and not care about the ethics. Just like at that NJ medical school. This is not an unusual case, they just happened to get caught.
It is about time these places got a stronger spotlight put on their behavior.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo 8..
You said..
"Sorry this may make you people mad,BUT another rally isnt going to do anything. We need a stronger approach."
Yes.. truth be known... there are many days.. actually MOST days.. when I'd like to grab each of them by the ear and drag them down to the alligator pit and kick their sorry butts in!
However.. this probably isn't the way to go.. as much as it WOULD make ME happy to see it done.
Sooooooooooooooo.. what IS the best approach to stop the madness? I'm afraid there are no concrete answers. But I do know...
I don't mind folks sharing their feelings about what is happening.. and offering up their opionions. I actually welcome them.
I think we can all agree ANYTHING that can get our point across should be discussed and/or considered. And I might mention .. it would be best .. and MUCH more helpful.. if it were done BEFORE any other plans are made and already in progress.
Now....
What I don't like to see is people kicking the efforts that are being made (putting the negative only spin on them)... ESPECIALLY when THEY don't also post a good workable plan as an alternative that WILL work.. AND.. VERY IMPORTANT... that THEY intend to organize, research, and carry it out and get er' done! Putting their money where their mouth is!
And often this kind of negative spin is being broadcast is from folks that haven't been successful in their own efforts to make changes for the good of all.. if they have even made ANY efforts at all! (And I am NOT pointing to you.. so don't get your nose bent out of shape, ok 8)
No doubt we ALL need to work together. Unless we do.. we ain't getting no where.. fast.
And honestly... I am not at all crazy about going to this protest. NOT AT ALL!
I'd rather not be working for weeks/months helping out with the background stuff. I'd MUCH rather sit home and do MANY other things. As a matter of fact just this morning I was wishing in my heart of hearts that I didn't have to make this trip. It will be VERY hard on me... no matter how well I try to prepare.
But.. like many others here.. I am willing to suck it up and do what seems like a good idea in the chance it just might be what is needed to boot the bums out of our way so children and families have clear sailing for treatment.. and the doctors who have gone WAY out on a limb to help all of us will be able to live their lives not wondering what anvil will be dropped on their heads tomorrow.
These plans were not just concocted by some raccoon wandering along the banks of some remote tributaries of the Amazon. And trust me.. I have checked into it fully. As many here know... I wouldn't agree to help.. nor go... if I had concerns it was a waste of our time.
These plans were made by those who have devoted their lives to this cause. The ones who I admire and watch as they have to struggle to keep going and going... despite all the odds... to help folks they don't even know!
As for a waste of time? Well... think about it this way. If you had a job.. and a person showed up one day and started protesting and pointing out to your bosses and co-workers that you were a menace... and you had done miserable things.. and had gone against your oath to "first do no harm"... and while at a Catholic based facility no less! OUCH on that fact alone! Anyhow...
How long would it be before you were run out?
Especially if you were a doctor who was being accused of skewing medical guidelines that resulted in hurting hundreds of thousands of people?
Now.. add a bunch more people to that picture.. so your employers can't say it is just ONE complaint.
Now add the media.. the fact we KNOW this is happening cause we are living proof.. and we have the medical proof to back us up.
Let's just say...
I don't think I'd want to be the Worm.. the Bumwyler.. or the Snappy Shap when this comes to be.
So what I'm really saying 8 MAN... dear one... is get with the program... in other words... poop or get off the pot!
For anyone NOT agreeing with what is happening, GET INVOLVED in the decision-making, organizing, and implementation process, and then have ALL the negative comments constantly coming to you.
I applaud each of these ANONYMOUS folks who have worked SO HARD, MANY HOURS, and tirelessly when they are so sick with chronic lyme!
Best wishes to all going, like Tincup and many others, SO SICK from lyme already and willing for their lyme ridden bodies to get worse due to OUR LYME CAUSE OF THE IDSA CRAPPY GUIDELINES!
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posted
this rally is the result of years of foundational grassroots efforts and the screwing up of the IDSA in this moment.
the IDSA thinks they have won.
let me repeat that: the IDSA thinks they have won.
all one has to do is read their guidelines to see the bogus-ness and clear chinks in the armor at which we MUST STRIKE NOW!!
anyone with a vested interest in Lyme activism over the past decade needs to physically be at this rally, in Valahalla, facing off with the IDSA.
if not, you are accepting the new guidelines.
plain and simple. i don't see it any other way.
this is pretty clear cut.
SEE the opportunity - at this moment in time we have Blumenthol and the media behind us. the quickest way to kill the momentum is to have a poor turnout. this kind of political and media focus is not easy to gain, and does not last long. it could easily become a flash in the pan.
SO STRIKE !!! we all ask why, when - how can we get help.
WELL HERE IT IS!! shine a light on this, make it public. that is the only missing link. it will not happen if we do not appear in masses.
please, do all you can to be there. do not let this ball drop -- as the impact of these guidelines will cause tremendous and needless suffering.
ACT NOW!!
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I haven't read all the posts. But, if someone is planning on carrying a sign for those of us who can't make the rally, please add my name to the list.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Mine too, and good luck to all who can make it there. I'll be prayin' for ya! Thank you to everyone who has worked so hard to accomplish this--YOU'RE AMAZING!!!!!! Posts: 89 | From UT | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I am so upset I have missed the boat for this protest by just 4 days....can't afford to fly back to NY right now Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Me too DLL,
I tried and tried and couldn't get help with the cost and there was no way I could even cover half of it.
I'll be up north 5 days late and am scraping to afford the hotel room for that.
I'm so disappointed. Can somebody make a big fuss for me? Please! I'd really rather be there in body than spirit but am out of options.
/whine
If anone can drag an extra friend or relative along in my place I'd greatly appreciate it.
Thanks and sorry.
I do have the perfect verse from a song to sing too...
(from)I've thought about it by Ralph McTell
"I've thought about it I really have tried And the answer quite simply Is that they tell lies And they've got the power And what they decide Effects your life and my life and everybodies life beside"
Perfect isn't it? and time for a change!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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if you cannot possibly be there, get others that you know, or don't know, to attend in your place.
use the spirit of the event and keep sending out the ripple in the water.
FIRST PRIORITY is to get others who can come to come. if you have time beyond that, get coverage of the challange to the guidelines and the atrocity of the same in your local papers, Blumenthol's investigation of anti-trust issues regarding the panel who wrote them, and the sheer lack of science applied to these restrictive guidelines - mainly - the DENIAL OF ACESS TO THE OTHER STANDARD OF CARE.
THERE ARE TWO ACCEPTED STANDARDS OF CARE in Lyme disease. these guidelines deny us one of them. as in breast cancer, prostate cancer... this denial is a violation of our right to disclosure of appropriate medical care choices.. (see Johnson article at CALDA)
with that, get others to go to the NY rally in your place.
we can make this happen.
it is time.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thanks Mo, I just posted the following in another non-lyme forum. Maybe someone will be willing.
In the NYarea? Wanna do some protesting?
Lyme Rights Protest < - click there This is very important to me and I cannot possibly make it. Costs were entirely too high from FL and I found it impossible to get sponsorship.
Anyone in the NE of the US wanna go and stand in for me? Bring your friends, relatives and neighbors, even. The more people the better and those of you, if there are any, in the Northeast know what a big deal this is.
There's nobody in that area who's life, or someone they knows, life has not been and/or will not be effected by this.
Thanks for reading and perhaps considering it.
Note to Admin: If this is completely unacceptable and inappropriate to have posted this here... please forgive me and delete it if you think that's the case, ok?
Think it'll ripple?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
blue, good for you; way to go girl!
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-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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P.S. I love the determination so many are showing to get to the protest.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thanks FFWW
My post elsewhere got 17 reads so far (ok, a couple were me checking my spelling and editing) but at least people are opening it and reading.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
up for the procrastinators to sign up!
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there tinny,
Now calm down....LOL...look who's talking!
Hey 8man12 you only live in PA...
I'm gonna go and I live in FLA...
LEAD..........FOLLOW>>>>>>>
OR GET OUT OF THE WAY!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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