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Post by Carrie♥ on Aug 5, 2007 0:26:41 GMT -5
August 17th 2007 at 10:00 am Clifton Road
Kelly has put together this rally and would like as many people in the area to join her. So far the only key speaker is Dr. Greg Smith. The police have already been notified of the date and all requirements have been met by the law to allow this rally. At this point she's still in the process of finalizing things and would appreciate any help, suggestions or efforts. Ms. Pea Pie's computer is down and she's expecting to be up and running again by mid week and will be here to check the progress of this thread.
Kelly is hoping to get at least fifty Morgies to go along with non-morgdified supporters she plans on bringing with her. So all us Morgies in the neighboring states please try to make it out. Sounds way too much for me being clear cross the country but for a worthy cause the next state over seems very do-able !?!
The purpose of the rally is to voice our opposition to the contract of the preliminary investigation being awarded to Kaiser Permanente due to glaring conflicts of interest on their Kaiser's part.
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Post by janedough on Aug 5, 2007 1:04:30 GMT -5
Great idea. Wish I could be there. I would if I didn't have the kids.
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Post by freaky on Aug 5, 2007 1:45:21 GMT -5
Finally, the beginning. The Revolution will be televised? !!!!!!! But, I must say, not good planning the day before my daughters wedding. I think that would be a mite (haha) too stressful. Get Routy. Remember when CFIDS was an issue? The CDC had comic strips on every wall of the building laughing at the poor tired souls, to tired to work, & too lazy to go.
Add that one to your memory file titled forgiveness, don't delete.
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Post by bugsy on Aug 5, 2007 9:52:21 GMT -5
At this point ... any press is good press. I don't really think that people gathering to disapprove of the CDC's selection of Kaiser will set things back.....on the contrary...I think it will put it in the limelight. I understand the fear of setbacks but the reality probably is that it will be Kaiser. A protest would perhaps make our concerns more visible and give them more public acknowledgement before the first lesion/fiber is examined. If you wait until after the fact.....it is too late to complain about the corruption or ill conception of the study. I wish I could attend. Good job Kelly and I wish you the best of luck!!!!!!
~Bugsy
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Post by Carrie♥ on Aug 5, 2007 10:56:31 GMT -5
Bugsy...I like you! You've got a good head on your shoulders gurl!
Please any and all interested post this info on any and all boards relevant for our cause or not! Hell...post it on the "TellyTubbies" site. Get it started right?
Pez...I think Kelly has been trying to contact you regarding this but hasn't been successful. I really don't want to get into the middle of a political issues of the groups with in our group so I won't say much. I think you have a good point and would love to see you contact her to discuss your concerns further. She's very animate with her concerns because she does have a strong Lyme diagnosis, Kaiser don't treat Lyme long term and we all know Lyme needs to be treated long term right!?! I haven't been in their "system" with my disease so I can't really speak intelligently on the surrounding circumstances. I know Kelly's got a heckofa mouth on her, she knows a lot of people and I expect there should be a nice turn out.
I just want to say one thing else being nonpolitical and all...I hope we can all come together for our cause. I'm a nonsider...there are many, many nonsiders!!! United we stand...divided we fall!!!
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Post by toni on Aug 5, 2007 11:22:58 GMT -5
That's the bottom line in life, divided we fall and united we stand and make progress!
I'll let the news know about this RALLY! This is GREAT!
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Post by Administration on Aug 5, 2007 11:26:17 GMT -5
I don't know about any political issues regarding "groups within our group", since we all are in the same boat. We're sick, we want to be heard, we will stand together, and that's the bottom line. It would only hurt us all if anyone should try to divide us.
I don't discourage any attempt on anyone's part to bring more awareness to our plight, but I do think openly criticizing Kaiser is a bit premature at this point. I understand everyone's unfavorable experience's with Kaiser but I have never heard of a pleasant experience with any HMO, they all pretty much operate the same. It stands to reason there might be more complaints about Kaiser since they are the largest HMO in the country, but that doesn't automatically mean we won't get a fair shake from them now. We're getting what we asked for and that is a huge step forward. We need to be sure that future steps continue to move forward.
It's all on record and with our help, the media won't let this fall through the cracks again. We need to stay on top of it but we also need to use caution when jumping to conclusions. We have waited a long time for this, it would be to our benefit to wait before faulting what hasn't even happened yet. If we blow it before even having proof of wrongdoing (or corruption), we won't be taken seriously the next time.
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Post by toni on Aug 5, 2007 11:57:29 GMT -5
That's true Admin.
My sole objective for the news was because of the "showing" of people trying to get help, would be another source of "public awareness" of the existence of Morgellons only.
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Post by Carrie♥ on Aug 5, 2007 12:07:21 GMT -5
But what about the way they treat Lyme? Do all HMO's treat Lyme in this fashion...like Kaiser? Really curiously asking because I don't have enough personal experience with Kaiser or HMO's. Well I do a bit with Kaiser...they said my Mother's teeth were fine a few times only months later my Mother went to another dentist that she paid for to find she had many cavities and issues that Kaiser didn't take care of...in fact completely ignored and neglected. I was working for that attorney at the time and wanted to bring suit against them for their blatant, flat out lies! Kaiser isn't concerned with the health of their members or of the people. They are concerned with lining their pockets...this has been shown time and time again!
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Post by toni on Aug 5, 2007 12:12:02 GMT -5
Gosh Carrie,
That's terrible. I've never been to them. I know my folks neighbors recently went to them in Ca, and they saved his life, he'd had a heart attack, (the neighbor) and they did open heart surgery and he's been good since. But I see so many here have had bad experiences...I'm sorry, that is ashame.
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Post by bugsy on Aug 5, 2007 12:30:25 GMT -5
Corruption = poor choice of words on my part.
More like Conflict of Interest. Ha
~Bugsy
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Post by Carrie♥ on Aug 5, 2007 12:32:42 GMT -5
I think like ER medicine for their members are going to be fine...I mean they got big suit issues if they wouldn't but long term and/or preventative maintenance care they don't seem to pay particular attention to or spend money on. But again, I'm not too familiar with it all and I'm a big Michael Moore fan today...it's about their money. I so agree health care should NOT be a business!!! Their decision to treat or not treat shouldn't be based on making money, spending money and Kaiser is a major contributor and/or instigator of the whole HMO conspiracy.
I'm curious to see what some more of our Lyme folks say about it Kaiser and Lyme and their thoughts for them being our front runner. But then again...if Kaiser is going to be getting paid for investigating the disease then that's their concern...them getting paid so it may not be a bad deal. I don't know enough about the whole thing, process...everything to really say so please help me out. Patti, Pez...Neils and kelly...or whoever that know more about HMO's and the process of the investigation and what's this is going to look like I'd appreciate the info.
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Post by Administration on Aug 5, 2007 12:32:50 GMT -5
But what about the way they treat Lyme? Do all HMO's treat Lyme in this fashion...like Kaiser? My guess is yes, and according to this forum most doctors in general treat Lyme in this fashion, whether they're part of an HMO or not. I'm not discounting any of the horrible experiences anyone has had with Kaiser or any other health practitioner, and I'm not saying we shouldn't champion for the rights of Morgellons sufferers. I'm only suggesting that we not shoot ourselves in the foot before we even know what is happening. Things are looking up for us, they are finally progressing the way we've wanted, and the premature passing of judgment could backfire on us if we aren't careful.
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Post by toni on Aug 5, 2007 12:40:41 GMT -5
I for one certainly agree with that too Admin.
I think the "more public" this is, the more Kaiser will perform, and if we are "grateful" "publically" that they're doing the research for America's newest "epidemic Morgellons" then they automatically have pressure on them to do a good job, because everyone is at risk of contracting Morgellons as we need to let the public know this, so automatically Kaiser cannot drop the ball because all of America will be watching, because Morgellons is not selective in whom it infects.
So if we don't "shoot them but praise them" really, and let the public be aware too that CDC contracted Kaiser....that IS to all of our benefit, the infected as well as the "not yet" infected with Morgellons.
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Post by Administration on Aug 5, 2007 13:01:00 GMT -5
Exactly Toni. If someone wants to rally and bring more awareness to this disease, that's fine - this is as good a time as ever with the study just being publicized. But if we do the rally with the intent of criticizing Kaiser, the public is going to wonder just what our problem is. We've been hounding the CDC for years and now that they are paying attention and doing something, we still complain? It won't fly and it won't make us look too good. It also won't change anything.
No, I'm not thrilled with who was chosen but I daresay no matter who they chose, there would still be a ton of people with bad experiences. That's the nature of this disease, nobody (HMO or otherwise) has believed us until now.
The announcement of this study, coupled with as many news reports as we can get, will ensure us more exposure. More exposure means more people watching to see what happens, and we have the power now to see that the media stays on top of this. If Kaiser messes up, then we can voice our opinions but to criticize them before the study has even begun makes us look ungrateful, and worse. We need some good exposure for a change and we're now starting to get it. Let's not mess it up.
If a rally takes place, it should be about Morgellons awareness, not bashing Kaiser.
JMO FWIW
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Post by Patti on Aug 5, 2007 17:35:59 GMT -5
I'm curious to see what some more of our Lyme folks say about it Kaiser and Lyme and their thoughts for them being our front runner...... .......I don't know enough about the whole thing, process...everything to really say so please help me out. Patti, Pez...Neils and kelly...or whoever that know more about HMO's and the process of the investigation and what's this is going to look like I'd appreciate the info. I can see why you would be confused, Carrie. But there are hundreds of posts on this forum about people's complaints on their Lyme treatment (or rather, lack thereof), and it involves doctors and HMOs from all over the nation. I don't see it as a HMO- or even Kaiser-specific issue, it's a national "disease-specific" problem that we've been fighting for years. Doctors can't diagnose or treat what they haven't been taught to recognize. And HMO doctors have it doubly bad since policy dictates what they can and can't do. I've heard horror stories from family and friends that involve many different HMOs out there, and it doesn't just involve Lyme disease. I've never viewed it as a conspiracy but it is a challenge that I don't see being solved anytime soon. You say you don't know enough about this study process to comment and I must commend you on being so wise.....none of us knows enough about it to speak at this juncture. That is why I agree with the other posters about not rocking the boat just yet where Kaiser is concerned. Judging them at this stage would be a very irresponsible action on our part. Many of you have had unfavorable experiences with a Kaiser doctor but that doesn't mean the scientists chosen for our study won't do their best, and certainly not any less than ones from Blue Cross would. I might add that we should be prepared for it to take some time, just as the press release stated. It's not going to happen overnight and it would not be a good thing for any of us to badger them and demand updates continually along the line. Studies just don't work that way but when they have it completed, we will know how to react and whether or not to be satisfied with the results. That will be the time to voice our opinions......doing so any sooner won't make a bit of difference on their part but it could end up hurting our entire group in several serious ways. I don't know if I've answered your question or not, I tend to ramble into other subjects without even realizing it ......I just want to wish everyone good luck on whatever you decide to do. If it's a rally that you want, I hope it's a peaceful, productive one for you all. I'm not close enough to participate but my support will be there with you.
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Post by toni on Aug 5, 2007 17:57:16 GMT -5
Yes, excellent!
I hope we can do this, because more bees are caught with honey!
There I go being corn ball again, but we know it's true.
And yes, how the public views us ESPECIALLY NOW, we don't want to look like we're "not that bad off" that we're being picky about who handles it, because anyone (a veterinarian) at this point is better than none bothering to.
This of course is ONLY my little opinion here, and I'll say it, only for food for thought.
If the rally is taking place, and IF you had big signs saying something like (THANK YOU for helping the thousands that are suffereing with the NEW EPIDEMIC Morgellons) people watching will then really would wonder what is Morgellons. Then they'll get to see, it's truly an epidemic by the "numbers of infected" once they then pay attention...cause people pay attention when the word SUFFERING with the new EPIDEMIC comes into the picture. Anything else, slamming Kaiser, would just make them think you're a fed up HMO subscriber.
(and please don't get mad at me for saying that about your rally, I want my life back just like you too) but we can't look like radical HMO patients.
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Post by bugsy on Aug 5, 2007 18:57:15 GMT -5
Ya know what....it is one thing to disagree with a persons ideas....and yet another to blatently disrespect it. Not cool. jmo ~Bugsy
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Post by bugsy on Aug 5, 2007 19:01:48 GMT -5
Yes, I can spell...just not today "blatantly."
Patti my above response was not addressed to you. You at least use diplomacy.
~Bugsy
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Post by Carrie♥ on Aug 5, 2007 20:16:53 GMT -5
Where the heck is Neils? I want to hear the debate on the other side of the fence.
Patti...that makes perfectly good sense even though, I have to admit I was thinkin' it was a fine cause to rally you've made a very valid point or points. So does this mean that they will just start seeing Morgellon's patients and start taking them seriously? Doing what...investigating this disease by seeing patients? Okay...wait. I doubt it very seriously. Help me see please. We know what it is like to go Doctor hoping after Doctor hoping. They just don't believe us. I have a hard time believing just because the CDC says check it out all of a sudden these monsters that have ridiculed us, mocking us in our face will all of a sudden take us seriously. Please...help me see what this is going to look like. Not just you Patti...anyone. This is serious and thinking about it a little more...ewe...I wouldn't want to see any of them anyway but hey, the thought of addressing Morgellons with a Doctor that isn't totally Morg friendly turns my stomach in knots. I'm going to see some Doc's next week and wouldn't even consider for a second to address Morgellons with them but I was stepped upon and squashed on by one to many Doctors boot.
Whew...I'm glad I'm not to passionate about this one. But when you start to debate about it-it opens you mind and makes you think. Thanks ya'll...expanding the mind is a very good thing!?!
Bugsy...what is jmo? You always get me wonderin' with that!
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