Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin 29572649 said..
"Makes sense to me that they would use this center as an opportunity to classify Lyme, and other conditions, any way they choose, including as autoimmune conditions and therefore not deserving of treatment."
BINGO!
That is exactly what the CDC/NIH/IDSA wants. Not to mention the IDSA.
This is their dream... and it is becoming a reality.
That is why I can't believe PANDORA has done this stuff... and I am assuming they did NOT do it with any intention of causing us harm.
The best thing at this point is to go forward with their plans... and hey... I'll even support them and help as I can...
BUT... they must take the words and concept of having anything to do with Lyme disease OUT of the Resolution and OUT of the current/future plans.
Bottom line....
If they sincerely are about helping people, this should not be a problem at all.
posted
Oh no, we're going to lose you for the rest of the night...
I think I'm going to include a 3-hour grits cooking session as part of the RWJ Diseases-Of-Unknown-Etiology starter curriculum (see post most of the way down first page) -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Ok, I just read through the bill - I'm concerned for ALL the conditions mentioned, that this is a cover-up of what is already known, and thus, a continued cover-up of what could be studied and learned.
Here we have CFS maybe due to an mouse RNA retrovirus, needing real scientific study.
Fibromyalgia, which I think about half of Lyme patients present with, known to be Lyme for many of us, and yet that's not even mentioned.
Gulf War Syndrome, studied extensively by Garth Nicolson, who thinks exposure to mycoplasma, like mycoplasma fermentans, may play a big role.
Lyme disease, which, thank goodness, they've included a phrase there about it being the fastest growing infectious disease, but still, they can do better than that - we know what causes it - a bacterium.
Some incorrect statements, one being that it takes co-infections to kick off Lyme symptoms - no, Lyme can start very well on its own,
and that it takes several decades for Lyme to be diagnosed - no it wouldn't, if we were recognized for the early symptoms we get - mine in ten weeks, many others with immediate symptoms.
And Multiple Chemical Sensitivity, which also depends upon our genetic ability to detox, like what is shown with the detoxigenomic liver test or the Yasko test - nope, we don't see any mention of liver health in this write-up.
They list autism, Alzheimers, MS, Parkinsons, lupus, etc without any mention that Lyme can present this way.
They do mention parasite-borne infections as a mechanism of transmission of NEIDs - wonder what they're going to do for that research - that's a broad study.
They say that since these conditions might all present similarly, treatments might overlap - well, I think it's still going to depend on the specifics of each, and not be so hasty to thinking one-size treatment is going to fit all.
In my experience, every treatment that was tried for my fibromyalgia was wrong - not until it was known to be a bacterial infection did treatment start to make any sense.
I'm concerned about the whole kit and caboodle here. I will be making phone calls to discuss the entire list.
If honest scientific work is not done, we will continue to get dishonest science and treatment decision outcomes from this effort.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
By the way, TC, your relaxation tape story was really funny - these infections have certainly changed the landscape, and I mean also the way professionals are used to doing their work.
I hope we can't get a virtual tick bite?!
Posts: 13116 | From San Francisco | Registered: May 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hey Tincup,
I am always so impressed with your knowledge base, as well as many others on lymenet.
I have read through both sides here, and it appears to me that this center is just dangerous. Some good intentioned people may be involved, but....
Think about it. I have learned this from teaching rhetorical writing.
If you wanted to draw your opponent into your argument or under your influence, you begin NOT by appearing abrasive, but by appearing like the opponent's best friend.
Right!
Too much potential for abuse in the "center." Gotta shut it down before it starts.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I support this new center in NJ along with other lyme groups efforts. I have met the individuals involved and their motivation is pure of heart, inclusive, and not for personal gain or notoriety.
No reason for any to feel threatened, as this will only be another stepping stone to getting lyme research as well as other related problems recognized and funded. This center will only validate individual lyme research causes that already exist, helping to remove the negative stigma created by the medical community who dismiss "chronic lyme".
This research center will bring together researchers from around the world who currently study similar illnesses to share information and study the possible connections and root causes.
We don't need tunnel vision anymore...as we all know this lyme we deal with has individual treatment successes. We all have other things along with the lyme! There is not just one way, or we would all be healed! There is so much more to research and to test.
We need to collaborate as researchers, patients and physicians, by looking at the total picture and be inclusive of complementary therapies. And listen to those who have valid research and treatment success with open minds.
Let's all work together please and do not be mis lead by someone, whoever it is and for what gain, to put a "spin" on this and is trying to stop a great thing for us all from happening! Our lives and our future generations are at stake.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
In what I read, XMRV was Linked to CFS, but not found to be the causitive agent. Historically so has EBV, I'm sure among others.
It's that XMRV a retrovirus, like HIV, that it has grabbed attention. And if found to be the cause, it would make CFS an infectious disease--- like HIV and lyme.
quote:Originally posted by SandiB: Just last week the XMRV retrovirus was discovered to be the cause of Chronic Fatigue and this was discovered by the Whittemore Petterson Institute, which the NEI Center is being modeled after.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Coral Gables, Forida -- Resolution SR-20 supporting the establishment of the NeuroEndocrineImmune (NEI) Center�, the first research center in the state of New Jersey and in the U.S., dedicated to understanding and treating chronic neuroendocrineimmune (NEI) illnesses which includes chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity, Gulf War Illness and other bacterial & viral infections chronic illnesses was passed unanimously by 38-0 votes by the New Jersey State Senate on June 10, 2010.
Senate Resolution (SR) 20, sponsored by Senator Christopher "Kip" Bateman (R), Senate Deputy Conference Leader, and Senator Loretta Weinberg (D), Chair of the Senate Health Committee, cited studies that an estimated 20 million American adults and children suffer with NEIDs. The economic impact and loss of worker productivity in the United States due to CFS/ME, alone, is estimated to be over $9 billion per year. Chronic illness represents 75% of all the health care costs in the U.S.
"It makes sense to locate the NEI center in New Jersey," said Senator Weinberg. "As the nation's medicine chest, New Jersey is home to research institutions and private businesses that can cooperate to find a cure for these debilitating diseases."
Senator Bateman added, "I look forward to the passage of Senate Resolution 20, solidifying legislative support for the research center, and have high hopes that this will, in fact, be a great step forward toward finding answers for the sufferers of these debilitating diseases."
Assembly Resolution 202 passes unanimously
Late last year, a similar resolution unanimously passed the New Jersey State Assembly 78-0. "Having a research center... is essential to promoting research into the etiology of, and therapeutic interventions for neuroendocrineimmune disorders (NEIDs)," according to Assembly Resolution (AR) 202 which was sponsored by Assemblyman Upendra Chivukula (D), Deputy Speaker; Assemblyman Herb Conaway, Jr. (D), Chairman, Health Committee; Assemblywoman Connie Wagner (D), Vice-Chairman; and Assemblywoman Mary Pat Angelini (R), member of the Health Committee
P.A.N.D.O.R.A. partners with the Lanford Foundation-Lifelyme�, Inc.
To be based in Newark, New Jersey, the NeuroEndocrineImmune (NEI) Center� is a community patient-driven project of P.A.N.D.O.R.A, (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc) in partnership with the Lanford Foundation-Lifelyme�, Inc.
The NEI Center� is the first research center to incorporate scientific and clinical research, quality in patient care, and social services, all in one state-of-the art facility. The establishment of The NEI Center� is based on the philosophy that the similarities in symptoms of neuroendocrineimmune disorders (NEIDs) are the human body's response to similarities in the underlying pathophysiologies that cause these disorders.
The cornerstone of the NEI Center's mission is that discoveries and advances made in any one of the NEIDs will be applicable and beneficial to other NEIDs, thereby bringing medical researchers closer to a cure. At its inception, the NEI Center� will include research of the following disorders/illnesses: Chronic fatigue syndrome (CFS), fibromyalgia (FM), Gulf War syndrome or illness (GWS/I), multiple chemical sensitivity (MCS), and other associated bacterial and viral illnesses.
"Moral and political victory," said Marly Silverman, a CFS and fibromyalgia patient who founded P.A.N.D.O.R.A. in July 1, 2002, "On behalf of P.A.N.D.O.R.A., we are mindful of the historical significance of the unanimous vote by the New Jersey Senate as well as by the New Jersey Assembly in 2009. Patients across this country will be celebrating what is an amazing and pivotal moment in the history of the neuroendocrineimmune disorders community. The New Jersey Legislature has demonstrated a caring commitment to a community of patients who for the first time in the state of New Jersey can look forward to a brighter and fruitful future."
Veny W. Musum, chairman of the NEI Center Project, who was diagnosed with chronic Lyme disease in 2004 along with his wife, Patricia, added, "The passage of SR 20 is a moral and political victory for millions of individuals stricken with neuroendocrineimmune disorders who have been living far too long without the compassionate support, research and treatment options they deserve. I am proud of my state of New Jersey!"
Advocates Extraordinaire� & community support
"The overall community support has been outstanding for this patient-driven, physician-approved project. The unanimous votes by each New Jersey senator came about because of the involvement of individuals who participated in the Advocate Extraordinaire� program, by making calls, writing e-mails and thanking the New Jersey Legislature for their vision and support of the Center," said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.
"The New Jersey legislators unanimous support for the NEI Center reflects the kind of leadership needed to bring about positive change in our nation's Health Care," said Sandi Lanford, Co-founder of the NEI Center� and the President-Founder of the Lanford Foundation-Lifelyme�, Inc, who was born and raised in New Jersey. The overall community support has been outstanding for this patient-driven, physician- approved project. "The unanimous votes by the New Jersey Legislature came about because of the involvement of individuals who participated in the Advocate Extraordinaire� program, by making calls, writing e-mails and thanking the New Jersey legislators for their vision and support of the Center," said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.
Dr. Lesley Fein, member of the NEI Center Project team, stated "This center will be a beacon of hope for patients nationwide, and a place which will bring scientific innovation in New Jersey as well as in the rest of the country."
Present at the passage of the law were Veny Musum, Chairman of the NEI Center Project and Debbie Floyd, team member of the NEI Center� project.
NEI Center set to open by 2012
The NEI Center founders are already preparing fundraising efforts to make the Center operational by late 2011-early 2012. For more information about The NEI Center�, visit: http://www.neicenter.com/
About P.A.N.D.O.R.A., Inc
Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy - Based in Coral Gables, Florida, P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a chronic fatigue syndrome and fibromyalgia patient. Its mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, multiple chemical sensitivities/EI, and Gulf War illness, and advocate on quality of life issues. P.A.N.D.O.R.A.is
Built on Hope - Strong on Advocacy - Finding a Cure through Research. For more information, visit: http://www.pandoranet.info/Posts: 471 | From NJ | Registered: May 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Nice to known that those we've asked to not have us included in the NEI Center are totally ignoring us. Guess we didn't make ourselves clear enough?
And what about that promise to INFORM Lyme patients what is going on?
Below is a write up (edited) for a similar Center already going the extra mile to mix all the "autoimmune diseases" together ... same goals, same mission, same principles as this proposed Center.
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About the Center
The idea to create a Center to foster study of the autoimmune diseases arose at a day-long meeting. At this gathering it became clear that some continuing mechanism to exchange collaboration among the members interested in autoimmune diseases was required.
Even at this first meeting, members working along parallel pathways on different diseases in different medical specialties found that their work would be promoted by such collaboration.
Historically, research on autoimmune diseases has gone on in different departments, because these diseases (there are at least eighty of them) can affect any organ in the body. The clinical manifestations are determined by the site of autoimmune attack.
The concept of a Center is to bring together the existing resources in many areas to improve and foster communication and collaboration.
The Center offers leadership in the study and development of improved diagnosis, treatment and prevention of autoimmune diseases.
Basic scientists are engaged in fundamental research on the immune response study the causes of its dysregulation and the reasons why they lead to disease.
Clinicians are searching for methods to improve the diagnosis and treatment of one or more of the autoimmune diseases.
Epidemiologists and geneticists are seeking out the environmental factors or the genetic traits that increase the risk of developing an autoimmune disease.
The Center creates the opportunity for all of the investigators to come together in advancing the battle against autoimmune diseases through research, education and better communication, resulting, eventually, in improved clinical care.
Research- The Center promotes individual and collaborative research on the initiation and development of autoimmunity and the pathogenesis of the autoimmune diseases. It fosters the sharing of specialized instruments and technologies, as well as precious samples from autoimmune disease patients.
Communication- The Center has established regular channels of communication among investigators and clinicians that are interested in different aspects of autoimmunity and autoimmune disease.
Communication vehicles include seminars, workshops, and colloquia focused on current research. From time to time the Center organizes international colloquia on interspecialty and interdisciplinary topics that cut across the broad field of autoimmune disease.
Education- The Center enhances education about the autoimmune diseases, while encouraging the inclusion of, and greater attention to, the autoimmune diseases in the medical curriculum.
The Center arranges training opportunities for those wishing to emphasize research on the autoimmune disease in their career development.
One goal of the Center is to assist in recruiting and supporting those interested in autoimmunity aimed at sparking fresh insights into the pathogenesis of autoimmune disease, seeking novel treatments, and developing strategies to prevent these diseases among those at risk.
Another goal is to serve as a clearinghouse for reliable information about autoimmune diseases to the wider professional and lay public, fostering collaboration to disseminate accurate, up-to-date information.
Improved Outcomes- The Center benefits the care of patients with autoimmune diseases. Improved communication and strengthened relationships among the clinical disciplines ultimately leads to better outcomes.
By encouraging the expansion of investigational programs and promoting new ones, the Center helps to advance our understanding of complex clinical problems.
Through the clinical trials and outcomes research will lead to better treatments.
posted
I guess study of illnesses and conditions can be useful as long as the truth of the connection to Lyme disease doesn't get covered up.
For example, so many of us with fibromyalgia and multiple chemical sensitivities have Lyme disease. I for one had a known tick bite with fibromyalgia developing slowly afterwards. Clear as day. Chemical sensitivities developed slowly/quickly.
So I would not be happy with a studied outcome that tried to say these conditions were not Lyme. Obviously, MCS is multivarious. Fibro, I'm not so sure whether it is anything other than Lyme.
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