Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 I am in support of everything that is going on with Lyme disease support EXCEPT for Pandora's proposal to mix Lyme disease up with unknown diagnoses - Lyme disease is NOT an unknown diagnosis and we should not be mixed in with what the PANDORA organization is planning. - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community...grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: _______________________________________________________ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedisease.org/news/touchedbylyme/305.html * Writing to Newspapers- http://www.lymedisease.org/news/touchedbylyme/383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedisease.org/news/touchedbylyme/387.html * The LDA has also created PSAs in the past- http://www.lymediseaseassociation.org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide.wordpress.com/paint-may-lyme-green/psa-donations/ * Money Spent- http://lymenaide.wordpress.com/paint-may-lyme-green/psa-expenses/ * Original Estimated Budget- http://lymenaide.wordpress.com/paint-may-lyme-green/paint-may-lyme-green-psa-est\ imated-budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. _________________________________________________ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R.A. believed in the proposed project and in the people behind it. P.A.N.D.O.R.A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R.A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R.A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R.A.'s general fund or any of P.A.N.D.O.R.A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R.A.'s project. P.A.N.D.O.R.A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R.A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green __________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010  I did my best as a patient rep at the IDSA hearing. I did it for the patient community. Well, this post is also for the patient community, because frankly, I'm so sick and tired of this divisional crap!  Who told you that PANDORA's Neuro-Endocrine-Immune Center is going to study diseases with no known origin? I read the same false statement in an announcement from the Lyme Disease Association some time ago. The LDA also had it posted on their website at the time. I don't know whether it's still there or not.  I wrote an email to Pat asking her why she made that false statement about the NEI Center, but I never received a response from her.  The email I sent on October 18, 2009 is included in this post, below.  CFS -- Caused by XMRV, Bb and Mycoplasma FM - Caused by Bb and Mycoplasma GWI - Treated with Doxycycline - Caused by Mycoplasma  The pathogen-causing illnesses above, along with Lyme disease caused by Bb, cause damage to the NEUROLOGICAL system, the ENDOCRINE system and the IMMUNE system. That explains why Lyme disease will be studied at the NEURO-ENDOCRINE-IMMUNE CENTER. Hello??????  So, what is the problem? I'll tell you what the problem is. The Lyme Disease Association spread propaganda about the NEI Center that is misleading and you have, unfortunately, fallen prey to it. The propoganda they spread is actually an UNTRUTH, because they have stated that the causes of these other illnesses are not known. At least one or two of the causes of the illnesses to be studied at the NEI Center are KNOWN!!   No one who supports the NEI Center has stated that the etiology of Lyme disease is unknown and it never stated such in the NEI Center NJ proposal. That was all PROPAGANDA!!!!  The NEI Center will proceed, whether Lyme patients " approve " of it or not. Why should we condemn research efforts based upon false statements? How gullible is the Lyme patient community, anyway?  Let's just wait and see for ourselves what FRUITS the NEI Center brings forth. YOU SHALL KNOW THEM BY THEIR FRUTIS. YOU SHALL KNOW OTHERS BY THEIR FRUITS, ALSO. This is exactly what we should do with any research center that focuses on Lyme disease, including the one at Columbia University.  What FRUITS are brought forth from the efforts of research centers? Check them out yourself, analyze them and see if the research done actually helps Lyme patients.  Let's remain hopeful that some really meaningful and productive research will be performed at the NEI.  Prior to posting untruths on a Lyme forum, please make sure you are not spreading false information at the beck and call of someone else who may have an UNKNOWN reason for doing so.  Remember Jim ? Stop drinking the KOOL-AID, people and start thinking for yourselves!!  And take the time to read up on COINTELPRO TACTICS, for if you do, you will start seeing examples of it throughout the advocacy community. You will begin to notice who stirs up trouble and corrals the community to CONTROL the situation. These tactics have prevented forward movement and I'm thoroughly sick and tired of seeing the same people over and over again discouraging any independent thought or action taken on behalf of patients.  If you sense that you are being led off a cliff by your so-called " leader " , remove your blindfold and change your direction.  Tina Founder Lyme Education Awareness Program L.E.A.P. Arizona www.leaparizona.com   LDA ACTION ALERT RE NEID CENTER IN NJ Sunday, October 18, 2009 11:52 PM From: " Tina " <leaparizona@...>Add sender to Contacts To: lymeliter@...  Dear Pat:  I was curious about the recent Action Alert from the Lyme Disease Association, Time for Lyme, CALDA, & Lyme Disease Association of Southeastern Pennsylvania that objects to the Neuroendocrine Immune Disorders Center ( NEID Center ) being considered by the New Jersey legislature. So I have been gathering information about this project. The information I gathered is best described in the following paragraph:  The Neuroendocrine Immune Disorders Center will be the first of its kind and will set a precedent that will open the door for other Satellite NEID Centers in Florida and other states. The NEID Center will promote research and serve the treatment needs of all the patients who fall under the umbrella of NEIDs. In a NEID Center, patients suffering with the overlapping symptoms of Chronic Fatigue Syndrome,  Myalgic Encephalomyelitis, Fibromyalgia, Gulf War Illness, Multiple Chemical Sensitivity and Lyme Disease will be treated in a clinical setting.  As we know, and NEID is a disease or condition that causes neurological, endocrine and immune dysfunction in the body.  Does Lyme disease fit that description? Of course, it does.  The nervous system maintains an intimate relationship with the endocrine system. When the nervous system is attacked by Borrelia burgdorferi and its many co-infections, the damage results in mixed-up messages sent to the endocrine system, which releases chemicals called hormones, which regulate certain bodily functions.  Does Lyme disease cause immune disorder? Yes, it causes that, too. This also relates to nervous system disorder, for nerve damage keeps us in a heightened nervous state called the SNS, or sympathetic nervous state. This causes our bodies to be subjected to constant stress response, and this continual stress response results in immune system dysfunction.  So, Lyme disease clearly falls under the umbrella term of neuroendocrine immune disorders.  I am also expressing my concern for the following statements contained in the Action Alert. Quotes from the Action Alert are in red type.  “The State of New Jersey is placing Lyme disease in a group with disorders of unknown causes: chronic fatigue, fibromyalgia, Gulf War Illness, multiple chemical sensitivity. It wants to open a center characterizing these disorders and include Lyme disease as " neuroendocrine immune " (NEID) disorders.† I cannot agree with this reference to “a group of disorders of unknown causesâ€, as it is well-documented that each of these disorders has at least one known cause. For example:  -Chronic Fatigue is caused by XMRV and Borrelia burgdorferi. -Fibromyalgia is caused by Borrelia burgdorferi. -Myalgic Encephalomyelitis is caused by Borrelia burgdorferi. -Gulf War Illness is caused by Chemical Exposure, Mycoplasma and receipt of multiple vaccinations in a short time frame. -Multiple Chemical Sensitivity is caused by Chemical Exposure and immune dysfunction from Borrelia burgdorferi.  Also see Dr. Garth Nicolson’s research in which he has found viral and bacterial infections in patients from all of these groups.  http://www.immed.org/illness/infectious_disease_research.html  In reality, although not exclusively, the majority of these disorders can be caused by Lyme disease. So, why is this objection and interference with the formation of a new research center being circulated among the Lyme disease patient community?  Also from the Action Alert:  “This is a serious danger to Lyme patient treatment as it mirrors what the IDSA and some governement agencies want to do, make chronic Lyme disease a collection of vague symptoms with no known cause, thus preventing treatment with antibiotics.† I agree that the IDSA and government agencies portray Lyme as a collection of vague symptoms; however, referring to Lyme disease as a neuroendocrine immune disorder adequately describes the resulting symptoms of Bb infection. The NEID Center is not referring to Lyme as a “collection of vague symptoms with no known causeâ€.  Therefore, this statement from the LDA Action Alert is incorrect and misleading. Why are you objecting to a research center that is focused on a group of diseases/disorders that have Lyme disease as their etiology?  “WHY: To remove Lyme disease from this resolution & from the center HOW: Call or fax the two senators. Tell each of them: • Including Lyme disease with disorders with no known cause will hurt Lyme patients everywhere and prevent them from receiving treatment.† If Lyme disease patients contact the New Jersey legislators and use the language in the instructions above, the Lyme patient community is going to look EXTREMELY UNINFORMED. With all that we have been through, why would we want to alienate ourselves from all these other groups who have experienced and shared the very same inhumane lack of consideration from the CDC?  What the Lyme patient community has in common with all of these groups is the inhumane lack of recognition suffered through the crushing control of the CDC, a government agency that should be held accountable for its years of misguided research, misappropriated CFS research funds and its blatant disregard for the health of all of these patient groups. “GOAL To have Lyme disease removed from a Resolution SR 133 which includes other disorders all of which have unknown causes.† Once more, the Action Alert states that the causes of CFS, FM, ME, GWI and MCS are unknown. That statement is simply not true!  Also, on the LDA website, the statement that the CDC and NIH fully support the NEID Center project is misleading, as well. You have met with key players at the CDC on more than one occasion, and you have consulted with the military on issues relating to Lyme disease. Would it be accurate to interpret these meetings as a colloboration with the CDC and military in which patients' interests were not being served?  If stating such would not be an accurate portrayal of your association with the CDC and the military, it is inappropriate for you to also make such an inference in the same context on your website or elsewhere with regard to the New Jersey NEID Center.  I stood before the IDSA Review Panel on July 30th of this year and made truthful statements about the injustices and wrongdoings that have been inflicted upon us. It was my responsibility to speak on behalf of the worldwide Lyme patient community. I made sure that ALL the statements I made were truthful. I made reference to the majority of these neuroendocrine immune disorders in my presentation, because they can be caused by the Lyme disease bacterium.  I spoke to you at the Hearing and afterwards at a restaurant at a table that we shared with other advocates and support group members. You complimented me on the presentation I made, and we spoke about research you are engaged in and your submission of conflicts of interest info to the Inspector General's office.  Pat, it is my sincere hope that you inadvertently overlooked the inaccurate and misleading content of this most recent LDA Action Alert and that you will take the proper steps to correct this misinformation that has been disseminated to the Lyme patient community.  Thank you very much. I look forward to your response.  Sincerely,  Tina J. Lyme Education Awareness Program L.E.A.P. Arizona www.leaparizona.com P.O. Box 2654 Mesa, Arizona 85214-2654 480-219-6869 Phone 480-830-2788 Fax  From: sfrobink@... <sfrobink@...> Subject: Re: [ ] Paint Lyme Green Date: Saturday, April 17, 2010, 11:08 PM  I am in support of everything that is going on with Lyme disease support EXCEPT for Pandora's proposal to mix Lyme disease up with unknown diagnoses - Lyme disease is NOT an unknown diagnosis and we should not be mixed in with what the PANDORA organization is planning. - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community... grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: ____________ _________ _________ _________ _________ _______ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedise ase.org/news/ touchedbylyme/ 305.html * Writing to Newspapers- http://www.lymedise ase.org/news/ touchedbylyme/ 383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedise ase.org/news/ touchedbylyme/ 387.html * The LDA has also created PSAs in the past- http://www.lymedise aseassociation. org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- donations/ * Money Spent- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- expenses/ * Original Estimated Budget- http://lymenaide. wordpress. com/paint- may-lyme- green/paint- may-lyme- green-psa- estimated- budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. ____________ _________ _________ _________ _________ _ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R. A. believed in the proposed project and in the people behind it. P.A.N.D.O.R. A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R. A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R. A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R. A.'s general fund or any of P.A.N.D.O.R. A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R. A.'s project. P.A.N.D.O.R. A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R. A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Tina - I hear your concerns - I went back and reread the resolution and the discussions on lymenet and CALDA about it. Seems to me that there are still a lot of concerns about the proposed center. My question is, is it appropriate to continue discussing it here, since this is a site for discussion of Buhner herbs. If a prolonged discussion here is not appropriate here, then maybe we should have a private discussion. But if it is ok to continue a discussion on this site -and I don't think this is going to be a short or quick discussion, then I can outline here what it looks like people's concerns are. Not meaning to be divisive/cointelpro about it - just to list some concerns that people do have and discuss. Thx - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community... grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: ____________ _________ _________ _________ _________ _______ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedise ase.org/news/ touchedbylyme/ 305.html * Writing to Newspapers- http://www.lymedise ase.org/news/ touchedbylyme/ 383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedise ase.org/news/ touchedbylyme/ 387.html * The LDA has also created PSAs in the past- http://www.lymedise aseassociation. org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- donations/ * Money Spent- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- expenses/ * Original Estimated Budget- http://lymenaide. wordpress. com/paint- may-lyme- green/paint- may-lyme- green-psa- estimated- budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. ____________ _________ _________ _________ _________ _ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R. A. believed in the proposed project and in the people behind it. P.A.N.D.O.R. A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R. A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R. A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R. A.'s general fund or any of P.A.N.D.O.R. A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R. A.'s project. P.A.N.D.O.R. A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R. A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Responses are within your post below: From: sfrobinkaol (DOT) com <sfrobinkaol (DOT) com> Subject: Re: [ ] Paint Lyme Green Date: Saturday, April 17, 2010, 11:08 PM I am in support of everything that is going on with Lyme disease support EXCEPT for Pandora's proposal to mix Lyme disease up with unknown diagnoses - Lyme disease is NOT an unknown diagnosis and we should not be mixed in with what the PANDORA organization is planning. - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community... grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: ____________ _________ _________ _________ _________ _______ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedise ase.org/news/ touchedbylyme/ 305.html * Writing to Newspapers- http://www.lymedise ase.org/news/ touchedbylyme/ 383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedise ase.org/news/ touchedbylyme/ 387.html * The LDA has also created PSAs in the past- http://www.lymedise aseassociation. org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- donations/ * Money Spent- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- expenses/ * Original Estimated Budget- http://lymenaide. wordpress. com/paint- may-lyme- green/paint- may-lyme- green-psa- estimated- budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. ____________ _________ _________ _________ _________ _ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R. A. believed in the proposed project and in the people behind it. P.A.N.D.O.R. A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R. A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R. A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R. A.'s general fund or any of P.A.N.D.O.R. A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R. A.'s project. P.A.N.D.O.R. A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R. A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 Hi - after spending more time this evening looking at the history and writings having to do with the proposed NEI (neurodendocrine immune) center in NJ, I have even more questions about what is going on. I think it's too much to discuss here. I also think it's fair to keep the focus of the Buhner herb site on Buhner herbs; the proposed center is not about Buhner herbs. I would prefer to chat with you soon by phone to go over the issues. Thx - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community... grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: ____________ _________ _________ _________ _________ _______ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedise ase.org/news/ touchedbylyme/ 305.html * Writing to Newspapers- http://www.lymedise ase.org/news/ touchedbylyme/ 383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedise ase.org/news/ touchedbylyme/ 387.html * The LDA has also created PSAs in the past- http://www.lymedise aseassociation. org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- donations/ * Money Spent- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- expenses/ * Original Estimated Budget- http://lymenaide. wordpress. com/paint- may-lyme- green/paint- may-lyme- green-psa- estimated- budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. ____________ _________ _________ _________ _________ _ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R. A. believed in the proposed project and in the people behind it. P.A.N.D.O.R. A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R. A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R. A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R. A.'s general fund or any of P.A.N.D.O.R. A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R. A.'s project. P.A.N.D.O.R. A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R. A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 > > > Tina - I hear your concerns - I went back and reread the resolution and the discussions on lymenet and CALDA about it. Seems to me that there are still a lot of concerns about the proposed center. > > My question is, is it appropriate to continue discussing it here, since this is a site for discussion of Buhner herbs. If a prolonged discussion here is not appropriate here, then maybe we should have a private discussion. Being from Europe I haven't read al the discussion, but it seems to me that the proposed center is a good idea that fits with the 'environmental disease' concept that Buhner is talking about. Lyme is not just one very special disease, it is a small part of the puzzle and I think studying these related diseases together is the only way to progress. There are many similarities with other diseases with officially unknown cause, where researchers also talk about 'auto-immune' and 'infection trigger', 'chemical burden' etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 Well, I would prefer continuing this discussion on this forum, as you posted your comment about PAINT MAY LYME GREEN and PANDORA's NEI CENTER on this forum in the first place. That way, others can find out more info about the NEI Center, also. And we may be able to clear up some misconceptions that are being circulated about the Paint May Lyme Green campaign, as well, for the benefit of the Lyme patient community as a whole, including those of us on the Buhner list.  If someone's not interested in what we're talking about, they can ignore our PAINT MAY LYME GREEN posts.  I'd still like to know what the other concerns are that you referred to that those on the Lymenet and Lymenet Leaders LDA lists are discussing.  I recall one concern expressed by one person on LDA Lymenet some time ago was that the NEI Center, to be built in Pat 's home state of New Jersey, would be taking funding that this person thought should go to " us " . Who was the " us " that the person referred to? I guess we need to make our own assumptions.  Besides that " loss of funding " concern and the false rumor that the causes of CFS, FM, ME and GWI are unknown are the only concerns I am aware of, but please enlighten me. Thx.   From: sfrobinkaol (DOT) com <sfrobinkaol (DOT) com> Subject: Re: [ ] Paint Lyme Green Date: Saturday, April 17, 2010, 11:08 PM I am in support of everything that is going on with Lyme disease support EXCEPT for Pandora's proposal to mix Lyme disease up with unknown diagnoses - Lyme disease is NOT an unknown diagnosis and we should not be mixed in with what the PANDORA organization is planning. - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community... grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: ____________ _________ _________ _________ _________ _______ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedise ase.org/news/ touchedbylyme/ 305.html * Writing to Newspapers- http://www.lymedise ase.org/news/ touchedbylyme/ 383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedise ase.org/news/ touchedbylyme/ 387.html * The LDA has also created PSAs in the past- http://www.lymedise aseassociation. org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- donations/ * Money Spent- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- expenses/ * Original Estimated Budget- http://lymenaide. wordpress. com/paint- may-lyme- green/paint- may-lyme- green-psa- estimated- budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. ____________ _________ _________ _________ _________ _ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R. A. believed in the proposed project and in the people behind it. P.A.N.D.O.R. A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R. A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R. A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R. A.'s general fund or any of P.A.N.D.O.R. A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R. A.'s project. P.A.N.D.O.R. A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R. A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 Ok, Tina, first of all - and these are some of my own questions at this point - why is pandora going to the NJ legislature for a resolution instead of just going ahead and setting up their proposed NEI (neuroendocrine immune) center? And why in NJ instead of in Florida where I think pandora is based? They say they're not taking public money, that they're accepting private money only? Do we know from whom, and what their interests and involvement are in the project? And how did you come to be involved in the proposal? Let's start with that much - thx - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community... grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: ____________ _________ _________ _________ _________ _______ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedise ase.org/news/ touchedbylyme/ 305.html * Writing to Newspapers- http://www.lymedise ase.org/news/ touchedbylyme/ 383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedise ase.org/news/ touchedbylyme/ 387.html * The LDA has also created PSAs in the past- http://www.lymedise aseassociation. org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- donations/ * Money Spent- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- expenses/ * Original Estimated Budget- http://lymenaide. wordpress. com/paint- may-lyme- green/paint- may-lyme- green-psa- estimated- budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. ____________ _________ _________ _________ _________ _ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R. A. believed in the proposed project and in the people behind it. P.A.N.D.O.R. A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R. A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R. A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R. A.'s general fund or any of P.A.N.D.O.R. A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R. A.'s project. P.A.N.D.O.R. A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R. A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 Ok, Tina, first of all - and these are some of my own questions at this point - why is pandora going to the NJ legislature for a resolution instead of just going ahead and setting up their proposed NEI (neuroendocrine immune) center? And why in NJ instead of in Florida where I think pandora is based? They say they're not taking public money, that they're accepting private money only? Do we know from whom, and what their interests and involvement are in the project? And how did you come to be involved in the proposal? Let's start with that much - thx - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community... grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: ____________ _________ _________ _________ _________ _______ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedise ase.org/news/ touchedbylyme/ 305.html * Writing to Newspapers- http://www.lymedise ase.org/news/ touchedbylyme/ 383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedise ase.org/news/ touchedbylyme/ 387.html * The LDA has also created PSAs in the past- http://www.lymedise aseassociation. org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- donations/ * Money Spent- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- expenses/ * Original Estimated Budget- http://lymenaide. wordpress. com/paint- may-lyme- green/paint- may-lyme- green-psa- estimated- budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. ____________ _________ _________ _________ _________ _ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R. A. believed in the proposed project and in the people behind it. P.A.N.D.O.R. A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R. A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R. A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R. A.'s general fund or any of P.A.N.D.O.R. A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R. A.'s project. P.A.N.D.O.R. A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R. A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 Hello Robin!  I have forwarded a synopsis of your questions to Sandi Lanford of Lifelyme, because I do not know the answers to them, except the last one about my involvement. When I receive the answers, I will post them for you.  I am not involved with the NEID Center. I have read about the Center, I read the NJ Resolution and I read the LDA Action Alert in October 2009. Then I sent the email to Pat .  Since all the bad press was recently circulated re paint may lyme green and pandora, and I responded to your post, I have been asked to be an " Advocate Extraordinaire " for the NEID Center. I have not discussed this with Lifelyme or Pandora yet, as I have not had the time. Whether I accept that invitation or not remains to be seen, as I do not even know what that entails or whether I have the time. So, that's the extent of my invovlement.  I support their endeavor thus far based on the response from PANDORA posted below, as I have gone to their website and spoken to two of the people involved and have MADE UP MY OWN MIND INSTEAD OF BLINDLY FOLLOWING THE BECK AND CALL OF SOMEONE ELSE.   For example: Hurry, Sheeple, while I tell everyone else that what they are doing is dangerous to Lyme patients, jump off the dangerous cliff and look stupid, as this will be the best thing we can do to help Lymies.  I'm not a rocket scientist, but I was still able to discern that the LDA Action Alert and the LDA 10-06-09 letter to a New Jersey Senator contained some false statements.  Action Alert http://www.lymedisease.org/news/lyme_action_alerts/236.html  LDA Letter to Senator http://www.lymediseaseassociation.org/HR741/NEIDfinal.pdf  In the LDA letter to the Senator, Pat referred to chronic neuroendocrine immune disorders as a " new concept. "  Type " neuroendocrine immune disorders " in your browser and you'll find lots of research that's already been published, so it's not a new concept at all.  Pat repeatedly confused the terms " neuroendocrine immune " with " autoimmune " in her letter. They are distinctly different. I told her I hoped that was an oversight on her part and asked her to correct it; however, to date, she has not retracted the false statements or answered my email. After explaining to her what neuroendocrine immune means, she still has not taken the letter off the LDA website.  Also from the LDA letter: " ...to now categorize Lyme disease as a " Neuroendocrine Immune disorder " is not only medically and scientifically incorrect, ... "  HOW ON GOD'S GREEN EARTH CAN A LYME PATIENT ADVOCATE STATE THAT LYME DISEASE IS NOT A NEUROENDOCRINE IMMUNE DISORDER??????  Also: " We have highlighted some of the dangers to patients of minimizing Lyme disease by obsuring its bacterial origin and calling it 'autoimmune.' "  Again, Pat confused neuroendocrine immune with autoimmune. Hard to believe, but true.  Then in the final paragraph, she told the Senator that his/her action of removing Lyme disease from New Jersey Resolution SR-133 would " help Lyme patients in New Jersey and nationwide receive the appropriate treatment necessary for them to live productive lives. "   HOW COULD REMOVING LYME DISEASE FROM THE RESOLUTION PROVIDE PATIENTS WITH APPROPRIATE TREATMENT????  THEN THE LETTER LISTS SIGN-ONS FROM 33 LDA AFFILIATES FROM AROUND THE COUNTRY WHO SIGNED ON TO A LETTER THAT CONTAINED FALSE INFORMATION THAT WAS SENT TO A MEMBER OF THE NEW JERSEY LEGISLATURE AND IS POSTED ONLINE FOR THE WORLD TO SEE.  As I said in my first response to your post, Robin, the Lyme community, including well-meaning advocates, must STOP DRINKING THE KOOL-AID and START THINKING FOR THEMSELVES!!!!  HERE IS PANDORA's RESPONSE TO THE LDA ACTION ALERT:   PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY – 501 c 3 – ID # 550795076 C/O VIÑA + COMPANY, 255 Alhambra Circle, Suite 715, Coral Gables, Florida 33134 Phone: 305-441-1591 Volunteer Help line: 954-783-6771 – www.pandoranet.info Introducing the NeuroEndocrineImmune (NEI) Centerâ„¢ A patient-driven grassroots project of P.A.N.D.O.R.A. in partnership with the Lanford Foundation-Lifelyme, Inc. Science = Innovation = Chronic Illness = Solutions October 12, 2009 New Jersey Senator “Kip†Bateman Via e-mail Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Centerâ„¢ and the Inclusion of Lyme Disease Dear Senator Bateman: The NeuroEndocrineImmune (NEI) Centerâ„¢ (of New Jersey) is dedicated to research, patient care, education, and community social services for patients with a group of illnesses that affect the nervous, endocrine, and immune systems. The body of current scientific research confirms that these illnesses share commonality and overlap of symptoms, which suggest shared pathophysiological mechanisms that produce chronic illness in these patients. For example, in recent and in-press publications, researchers have reported that approximately 30% of previously diagnosed chronic fatigue syndrome (CFS) patients test positive for Lyme disease (LD). The Center for Disease Control and Prevention (CDC- Reeves) at the May 27–28, 2009, CFS Advisory Committee meeting stated that Lyme disease is known to be a potential trigger for CFS. Therefore, if some patients with CFS are treated for LD, their quality of life and health will improve considerably. The NEI Centerâ„¢ is dedicated to increasing knowledge, improving patient care, developing new therapies, and serving as a repository and dispenser of scientific information regarding these illnesses. It is not the intent or role of center personnel to classify or reclassify or to name or rename any of these illnesses. The NEI Centerâ„¢ is committed to the development of a robust, healthcare community within the State of New Jersey. We believe that any interested party who wishes to mount a research, patient care, educational, or social services program within the state, and who is willing to abide by the laws and safeguards provided by the state and the federal governments, has the right to engage in such activity without the infringement or opposition of another organization. Representatives of the NEI Centerâ„¢ believe it is unfortunate and misguided for an alleged patient advocacy group to oppose efforts to enhance research, patient care, education, and community social services for an illness that the patient advocate group claims to represent. The motivation of such a group is suspect. With regard to recently written materials already being circulated on the Internet and the comments made by a patient advocate group that has gone on record as opposing the inclusion of Lyme disease in the disorders to be studied at the NeuroEndocrineImmune (NEI) Centerâ„¢, we respond: · The NEI Centerâ„¢ (also referred here as the Center) will serve as a repository for all data generated by its investigators and by those researchers who wish to submit their data to the Center. · The NEI Centerâ„¢ has not, and will not, address the issue of the classification of any of the illnesses being studied within the center or elsewhere. It is the position of the NEI Centerâ„¢ that the classification of illnesses (be they diseases or syndromes) is the responsibility of the World Health Organization, which catalogues and classifies the recognized illnesses of the world. (ICD10/ICD9). It would obviously be presumptive of the NEI Centerâ„¢ to usurp or attempt to alter the work of the World Health Organization. · The NEI Centerâ„¢, as does Western medicine, recognizes the distinction between symptomatic treatment and curative treatment of illness. Although curative treatment is the ideal goal of health care, curative treatment is not available for all illnesses. When such treatment is not available, or even if it is available, symptomatic treatment is standard medical procedure. Thus, for a patient with pneumonia, antibiotic treatment may be curative, but such treatment does not preclude the physician from dispensing medication that will ease the patient’s cough or reduce his or her fever. · The NEI Centerâ„¢ believes that many neuroendocrineimmune disorders have complex etiologies. Many researchers and physicians feel that long-term, chronic infection will deplete and invoke changes in the immune system. Multiple co-infections are now being found in many chronically infected patients. To preclude the investigation of co-infections in patients with Lyme disease based on the fear that such findings would suggest immune system abnormalities as stated by this patient advocate group in Lyme disease patients (see attachment), does a significant disservice to Lyme disease patients and prevents the freedom of scientific inquiry that is the basis of success in biomedical research and the development of new therapeutic agents and procedures. · The NEI Centerâ„¢ maintains that Lyme disease, as well as the other neuroendocrineimmune disorders (NEIDs) that the center embraces, is not currently classified as autoimmune disorders. Unless future scientific research demonstrates otherwise, Lyme disease will always remain in its current class of illnesses and, thus not be included or classified as an autoimmune disorder. However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease. The NEI Centerâ„¢ and the biomedical research community should be permitted the right to investigate the possible presence of an autoimmune component in chronic or persistent Lyme disease (PLD) or the induction of autoimmune defects in persons exhibiting chronic or PLD. · The NEI Centerâ„¢ believes that the inclusion of Lyme disease in the center’s mission will accelerate research and the development of therapeutics for patients with LD as well as speed up research and development of therapeutics for illnesses with shared and overlapping symptoms. · The concept and mission of the NEI Centerâ„¢ is a scientific, medical, pharmaceutical, and patient-driven grassroots initiative that aim for quality of life solutions for a large population of Americans that for far too long have been forgotten and underserved within our current medical system. The overall concept of the NEI Center’s mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health. · The NEI Centerâ„¢, as proposed, complies with the new biomedical research model being promoted by the NIH and will stand as an example of the implementation of its Roadmap Initiative. · The enhanced and accelerated study of neuroendocrineimmune illnesses, including Lyme disease, at the NEI Centerâ„¢ can only improve the knowledge of and therapeutics for all these illnesses. There are no negative aspects to the inclusion of any related illness in the mission of the NEI Center. We appreciate the opportunity to respond to you on this important issue and we are at your disposal for any questions you or your staff may have on this crucial piece of proposed legislation. It is with great gratitude that we say that passage of this historical piece of legislation by the New Jersey Senate, complementing the legislation already passed in the Assembly, will not only be a moral and significant victory for the citizens of the great State of New Jersey, but it will be one that will impact millions of Americans. Passage of this resolution will happen because of your vision, compassion, and caring for the citizens you so proudly represent. You will be a champion for not only our community of suffering, but for every American affected with these significant healthcare challenges. You will be making a difference in the lives of the many individuals whose voices are being silenced by the devastating consequences of these illnesses. In Good Health and In Beauty, Marly " Marla " C. Silverman Sandi Lanford Marly C. Silverman Sandi Lanford Founder Director-at-Large Founder & President P.A.N.D.O.R.A., Inc. P.A.N.D.O.R.A., Inc. Founder, The Lanford Foundation-Lifelyme, Inc. www.pandoranet.info www.lifelyme.org Cc: New Jersey Senate Legislature Roster  From: sfrobinkaol (DOT) com <sfrobinkaol (DOT) com> Subject: Re: [ ] Paint Lyme Green Date: Saturday, April 17, 2010, 11:08 PM I am in support of everything that is going on with Lyme disease support EXCEPT for Pandora's proposal to mix Lyme disease up with unknown diagnoses - Lyme disease is NOT an unknown diagnosis and we should not be mixed in with what the PANDORA organization is planning. - Robin [ ] Paint Lyme Green Hi All, Apparently there has been some confusion about the cause " Paint Lyme Green " . It is a sad state of affairs that the IDSA has created an atmosphere of mistrust and cynicism in our close-knit community... grrr... and of course that fits right into their agenda. After viewing a couple posts on this forum in regard to the above cause I contacted the group to see what their story is and these are the 2 replies I received: ____________ _________ _________ _________ _________ _______ No one from CALDA has ever contacted me with regards to the Paint May Lyme Green project. It would seem that you are mistaking this project with another that is unrelated. I had in fact contacted CALDA regarding this project early on when I was looking for a non-profit to sponsor it.The project was well received, but it seemed that CALDA was unable to take us on as an affiliate project at that time. Parts of the Paint May Lyme Green campaign have been posted and referenced on CALDA's blog " Touched by Lyme " over the past few months. * Project Lyme Art Quilt- http://www.lymedise ase.org/news/ touchedbylyme/ 305.html * Writing to Newspapers- http://www.lymedise ase.org/news/ touchedbylyme/ 383.html I fail to see how creating awareness through social media avenues and the production of a public service announcement to inform the general public about Lyme disease risks, would be endangering patients with chronic Lyme disease. CALDA asked Ben Stiller and Letterman to make a PSA for this May about Lyme disease after they discussed it on The Late Night Show. * CALDA's call to Ben and Dave- http://www.lymedise ase.org/news/ touchedbylyme/ 387.html * The LDA has also created PSAs in the past- http://www.lymedise aseassociation. org/PSA.wav It is very clear where every penny for this project is going. I personally keep track of every donation that is made to Paint May Lyme Green. I also keep track of every penny that is spent on the project. Both of these pages are available to the public along with the estimated budget that we originally put together for the PSA/viral campaign on my website. PANDORA is the non-profit sponsor of the viral and PSA campaign allowing us to receive tax-deductible donations specifically for this campaign. No money is going to research or anyone's " research agenda " . It is all going to the Lymenaide's Paint May Lyme Green awareness project. * Donations Received- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- donations/ * Money Spent- http://lymenaide. wordpress. com/paint- may-lyme- green/psa- expenses/ * Original Estimated Budget- http://lymenaide. wordpress. com/paint- may-lyme- green/paint- may-lyme- green-psa- estimated- budget/ I don't know of any other project or organization that shares this information so openly with the public and their supporters. ____________ _________ _________ _________ _________ _ What Paint May Lyme Green IS- Paint May Lyme Green is a grassroots project organized, implemented and funded by the Lyme disease community. Paint May Lyme Green was started by van Tol of Lymenaide. The intention of the project is spreading Lyme disease awareness to the general public. Paint May Lyme Green is, simply put, another way of saying Lyme Disease Awareness month. Under the title " Paint May Lyme Green " and others from within the Lyme community have been promoting all awareness campaigns they know about for May 2010. Our intention is to get more people involved with the various projects. The goal is to create more awareness for Lyme Disease Awareness month. Lymenaide and And What Productions ( and her brother Z.S.) additionally embarked on an awareness project to create a viral campaign and a television Lyme disease public service announcement. and Z.S. are donating their time and skills to these two projects. Production of a project such as this still costs money. Not being non-profits themselves, contacted existing Lyme organizations with 501©(3) status to take her project on as an affiliate project. This would essentially make it possible for Paint May Lyme Green and Lymenaide to raise tax-deductible donations. P.A.N.D.O.R. A. believed in the proposed project and in the people behind it. P.A.N.D.O.R. A. is the main non-profit sponsor of the Paint May Lyme Green viral and PSA campaign. All of the donations donated through P.A.N.D.O.R. A. for Paint May Lyme Green, go to the Paint May Lyme Green awareness campaign. Should there be any monies left over after the production costs of the viral and PSA campaign have been covered, they will be held by P.A.N.D.O.R. A. for use by Lymenaide for future Lyme related projects. Lymenaide fully intends to continue with awareness projects in the future. Including, making Paint May Lyme Green a yearly campaign to promote Lyme disease awareness month campaigns. What Paint May Lyme Green IS Not- Paint May Lyme Green is not raising money for P.A.N.D.O.R. A.'s general fund or any of P.A.N.D.O.R. A.'s other projects or affiliate projects aside from Paint May Lyme Green. Paint May Lyme Green is not raising money for research. Paint May Lyme Green is not P.A.N.D.O.R. A.'s project. P.A.N.D.O.R. A. is Paint May Lyme Green's viral and PSA campaign sponsor. Lymenaide is in control of the Paint May Lyme Green Project. P.A.N.D.O.R. A. is the main sponsor of Lymenaide's project making it possible for us to receive tax-deductible donations from others who support our awareness cause. - van Tol Project Director of Paint May Lyme Green ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
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