Notice that the proposed Child and Adolescent Category (yes, they do like insurance acronyms). does NOT include tick borne diseases as a differential. Uses irritable bowel and a generic neurological diseases, etc. as differentials. No pathogens other than viruses are mentioned.
Also notice the striking similarity with tbd symptoms.
Look at the major focus on psychological/mental health.
Not one word about finding a pathogen or pathogens.
Interesting that there is no mention of tbd's until the interest of the pandora and lymelife came into the picture, perhaps as a possible monetary source for the cfs research.
He has stated earlier that funding for federal cfs research has dwindled. Looking for more funding? Just bring in lots of things...sort of like running a multiple hook line, rather than a single hook, when fishing. --------------------------------------------------------------------------
He has ties with CDC and NIH but appears to be a strong advocate for CFS.
Claims there is a physiological basis for it, but ignores any disease mechanisms other than an unknown association with some viruses.
As he is a pharmacologist, I would expect he would be looking for pallatiative care via new drugs. Yet, what is seen in the NJ med school profile is an interest in operant conditioning and music, for pain, as research interests. Huh?
NJ is the home of Pallone.
Perhaps IDSA would just love to see lyme/tbd's thrown in with the Unknown Etiologies Looking for Pallatiative Coverups.
Perhaps there has been a promise of research funds to encourage this new perspective, which IDSA also has promulgated via their recent plethora of simplistic psychological profile attempts of "chronic lyme". Since lyme patients have received their 30 day "cure", what else is left but another nameless dysfunction or dysregulation.
People have sold out for less in order to advance their own agenda.
Weinstein's words ring out pretty loud....one knows where IDSA would like to put chronic lyme, and it is not in the realm of "cure" or even "remission".
Do not be a pawn for other's power agendas, nor fall victim to your own. You will get sacrificed along the way, as will others.
And to think that CFS/ME, FM, GWS, MCS, and CLD individually have had decades of individual research, with no cause no cure etc found yet.
Bringing them under one massive umbrella will bog down research even more. Can it get even slower? Surprised they did not throw in Morgellons except the Kaiser/CDC psych profile is not out yet...
Why not just sponsor conferences where the various fields can share knowledge?
Or sponsor a study where they know already know tbd's?
This NEID path is fraught with dangers and is a totaly inefficient use of money.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
you are right Optimistick - this would affect all of us - not just NJ
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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bettyg
Unregistered
posted
breaking this up to read for severe neuro lyme folks like me/others ... betty
quote:Originally posted by njlymemom:
received this from Senator Bateman by email: ********************************************
" have attached a letter explaining the reasons for my support of SR-133.
The inclusion of Lyme Disease in the bill allows Lyme Disease research to be accelerated and can lead to new therapeutics for Lyme Disease patients.
The NeuroEndocrineImmune Center (NEI) does not classify Lyme as an ``autoimmune'' disorder, but the current and future classification of Lyme Disease does not preclude an ``autoimmune'' component from being present in Lyme.
NEI is fully supported by the ``Center for Disease Control and Prevention'' and ``National Institute of Health.''
Senator Kip Bateman
the letter that was attached (and this is the best I can do with my computer skills):
PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY - 501 c 3 - ID # 550795076
Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Center� and the Inclusion of Lyme Disease
Dear Senator Bateman:
The NeuroEndocrineImmune (NEI) Center� (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- William 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 Center� 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 Center� 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 Center� 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) Center�, we respond:
* The NEI Center� (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 Center� 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 Center� 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 Center� to usurp or attempt to alter the work of the World Health Organization.
* The NEI Center�, 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 Center� 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 Center� 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 Center� 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 Center� 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 Center� 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 Center�, 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 Center� 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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin 43456 said... "Why don't we just beat them to the punch and put together the curriculum for them? We've probably already experienced it..."
You all have sure done a LOT of research and I appreciate you sharing all these details.
I'm afraid this project is truly going to be something that affects ALL of us negatively, both nationally and internationally.. if it is allowed to take root in NJ.
It has far-reaching consequences and in MY opinion, it can set a dangerous precedent.
I do believe some of the folks involved originally had good intentions. I really do.
I am just SO sorry they feel that keeping things from others... especially something that will affect so many lives and is so complex... is still the best way to go.
I keep hearing the worn out catch phrase from some of the Lyme groups who aren't working together saying, "We have to work together!"
This is NOT the way to show they are sincere.
HAD anyone involved in this project even made ONE call or sent ONE email to others in the Lyme community about this in advance ... even a private communication to one of many people who would have been happy to provide assistance....
The major problems could have been addressed early on.
This would have saved people SO much time, work, frustration and heart ache.
OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
Northstar, the FISHING analogy - going fishing with multiple hooks to see what they catch - is very apropos here.
And Fat Lymies with Money and Stupidity is part of the Catch they may be looking for.
Lyme does not belong in this newly created category for all of the reasons outlined and more.
Regardless of WHO they get to head the institute as Research or Medical Director, Lyme does not belong IN THIS INSTITUTE.
That's the message, New Jersey and National people.
Lyme does NOT belong under the brand-shiny-new-newly-trademarked-for-$$-umbrella of NEID or NeuroEndocrineImmune Disorder, or since they have lately been dropping the DISORDER part, the newly created NeuroEndocrineImmune classification.
That message above all others.
Lyme has a known bacterial cause and over 21,000 research papers investigating it - don't throw it in with the new Loony Bin for disorders of unknown origin, which some contingents will be using as the "loony bin" for all MUS - Medically Unexplained Symptoms, and with the Dysfunction/Psychiatric jargon of the IDSA July Panel.
Lyme disease MUST be out of the proposed resolution and OUT of the new Center.
And BTW if I were the CFS people or the Fibromyalgia people or anyone of the other diseases or disorders, I would be furious at being put under this new umbrella as well. I would be furious at being labelled by the IDSA panel speakers last July and I would be furious at being classed as MUS.
What happened to concensus building that SHOULD have gone on well in advance, between all of these disease groups, to brainstorm on THE NEED for this center and to engenger support?
Let alone being classified under this new umbrella?
[ 10-16-2009, 09:02 PM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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posted
I have been one of the fibromyalgia people and my fibromyalgia is Lyme disease. So much for unknown etiology on that one, although they try vewy, vewy hard to keep it that way.
Posts: 13171 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Is THIS garbage really necessary?
This is from a letter to potential supporters of PANDORA's efforts... and I quote.
"We have composed a letter clarifying the convoluted issues that have recently been raised by Pat Smith, president of the Lyme Disease Association.
LDA is a patient advocacy group for Lyme disease. Most of you are familiar this organization.
In case you have read any of the comments on the internet blogs coming from members of this advocacy group you know they are expressing their displeasure over the NEI Center we are presently persuing to establish in New Jersey.
The information they have dispersed is mean't to discredit us and our mission.
However, inorder to keep the facts straight we have composed a response letter to counter their many inaccurate and false statements."
`````````````````````````````````````````````````
The LDA and MANY MANY groups across the country... and individual patients.... have stated objections to the word "Lyme Disease" being used in a list of Neuro-Endocrine Immune Disorders.
They wrote and asked legislators to please remove it.
THAT'S ALL!
And in return ONE person gets trashed for their efforts?
The letter said.. "The information they have dispersed is mean't to discredit us and our mission."
HELLO!!!!!!
It's NOT all about YOU! Get over yourselves and stop trashing others!
The information was sent out to inform patients of what others are doing behind the scenes that they haven't bothered to mention.
The information was sent out to let folks know they are in trouble if they allow a Center at RWJ to control Lyme treatment and set the rules.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And where did the term NEI come from?
According to their letter...
`````````````````````````````````````````````````
"It was Marla Silverman who came up with the name - Neuroendocrine Immune Disorders (NEIDs).
Under the umbrella of Neuroendocrine Immune Disorders are listed the following diseases: Chronic Fatigue Syndrome, Fibromyalgia,, Gulf War Syndrome, Multiple Chemical Sensitivities, and Persistent Lyme Disease."
Now she may be a perfectly lovely lady and I know nothing of her ... BUT... in MY opinion....
She has NO right to waltz into a war we are fighting and we have been fighting for years on end to help our families, neighbors and children...
And with the snap of her fingers stick countless numbers of sick Lyme patients in a made-up category of illnesses with NO KNOWN cause ...
And put us all under the devises of a known DUCK HOTEL that none of us would ever go to because of their rotten Lyme reputation....
And risk all of us losing our ability to receive treatment, be reimbursed by insurance and protect our doctors current treatment protocols because she doesn't know what she is doing.
Did she ever consider ASKING us if this is what we wanted or if this was what is best for us?
NO!
And when we find out accidently what she has done without our knowledge ... and reasonably object by asking those involved with the Resolution to take Lyme off a list of diseases with no known cause OFF her list...
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
quote: n case you have read any of the comments on the internet blogs coming from members of this advocacy group you know they are expressing their displeasure over the NEI Center we are presently persuing to establish in New Jersey.
The information they have dispersed is mean't to discredit us and our mission.
comments from members of this advocacy group
Wrong. This poster is not a member of any group.This poster deals in issues, with no organizational affiliation information...is mean't [sic] to discredit us Wrong. Pointing out weak spots and problems down the road is not discrediting. It is constructive criticism.
Summary: the quoted statement misrepresents and misinterprets what is seen here on this board.
our mission Mission? That is an interesting point of view and flamboyant terminology, typically used to consolidate groups, and add emotional value to objectives, in order to provide a "higher order" blessing upon the actions of a group.
Other flamboyant campaign rhetoric terms:
Moral victory...... Your vision..... Your compassion......
quote: 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.
posted
Ok, here is an RWJ starter curriculum for diseases-of-unknown-etiology.
First, a questionnaire regarding health conditions. If anyone thinks they know what they have, they are disqualified.
Then, first class: history of undiagnosed diseases.
Second class: history of undiagnosing diseases. This includes all testing that undiagnoses any clear diagnosis we may have received.
Extra credit: coming up with lots of acronyms for having an undiagnosed condition. For starters: MUS (Medically Undiagnosed Symptoms), WTHDIH (What The H*** do I Have?),
IMHBYM (It Must Have Been Your Mother), SITWOTAOTS (Something In The Water Or The Air Or The Soil), etc.
Third class: A Practicum - Some actual relief techniques: breathing deeply, chanting, humming, listening to music (bring your favorites to share), making art projects, mask making,
stress lowering (of course - how could we forget that? maybe some massage);stretching, or just thinking about stretching
writing a letter to yourself about your goals, then sharing what you wrote with someone else in the group;
writing a letter about all the things you no longer want in your life, then ripping it up in a group ritual, etc.
Fourth class: field assignment - interviewing others who Moved On with their life in spite of their unidentified afflictions, and reporting back.
Determining what the common denominators were that allowed them to do so. No fair counting those already six feet under.
Fifth class: drama therapy. Vision questing: coming up with a vision of yourself doing what it is you would like to be doing in spite of your unidentified condition. Act it out.
Sixth class: hypnotherapy. Memorize several class lines: I do not have anything wrong with me. Whatever it is I think I might have, I don't.
I am not powerless over my neuroendocrineimmune*/missingenzymes/faultymetabolism/lostsleep/painpainpain/lostbrain/can'tfeelanythingthere/lossofvimandvigor/missing bodilyfunctions/earringing/heartpalps/invisibleitching/memorywhatmemory?
/nojobanymore/nomoneyleft/nofriendsleft/nofamilyleft/nohousingleft/nosanityleft unidentified health condition.
Seventh class: carless folks, and how they did it. This relates to autoimmunity.
Eighth class: invited motivational speaker Swami Beyondananda with his motivational products, including his bestselling book Driving Your Own Karma and empty box of nothing
(nothing sells like nothing; nothing down, nothing lost; nothing to it, nothing succeeds like success, etc).
Fun class: cooking class - bring your favorite recipes. To learn how to focus on Other Things In Life.
Second fun class: Sick Humor. Humor is good for you.
Extra extra credit: write an essay comparing UFOs and UHCs (Unidentified Health Conditions). Discuss issues of reality/unreality, whether psychological issues are primary or not in both cases.
I'm sure there's room for more class curriculum here...
* nerndocrimune for short, like fer shur
[ 10-19-2009, 04:51 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
NEW ACTION ALERT...
Oct 18, 2009
Senate Sponsor States- "NEI is fully supported" by CDC & NIH
From: Lyme Disease Association, Time for Lyme, CALDA, & Lyme Disease Association of Southeastern Pennsylvania
HISTORY
In our last Action Alert, we informed you of a Resolution already passed by the New Jersey Assembly for a "Neuro-Endocrine Immune (NEI) Center."
Click here to see the letter currently asking the New Jersey Senate to remove "Lyme disease" from the Resolution (SR 133) it will soon consider.
WHO: National Alert! We need everyone across the USA to contact the NJ State Senate Health, Human Services, and Senior Citizens Committee members listed below, since more centers are being planned in more states.
WHEN: Start immediately.
WHAT: Talking points and email suggestions to address Resolution SR-133
Ask NJ Senators to remove "Lyme disease" from Resolution SR-133!
You can tell them that including Lyme disease with disorders of unknown origin will set Lyme research and treatment back.
You can tell them the IDSA, insurance companies and others will use the classification to prevent you from receiving appropriate treatment.
You can also tell them non-treatment or treating symptoms only and not the source are some of the reasons you are in this current situation.
Provide name, address and contact info (if a group, provide the group's name).
Patients with Lyme disease should be alarmed by the recent effort to recategorize chronic Lyme disease as autoimmune, or to place it under a term apparently coined by P.A.N.D.O.R.A. for their own purposes, specifically, "Neuro-Endocrine Immune Disorder."
Lyme disease has a KNOWN ORIGIN - Borrelia burgdorferi. It should not be classified with these other conditions which are treated only to manage symptoms.
Managing symptoms ONLY, while allowing a complex infection to progress unabated, is not in the best interests of patients with Lyme disease.
The inclusion of Lyme disease in this Center's mission is a national concern for ALL Lyme patients since P.A.N.D.O.R.A. reports, "once the NEI Center is in full operation it is our vision to setup satelite NEI Centers in other states."
We are concerned that in response to your personal contacts with NJ legislators, promoters of the proposed "Neuro-Endocrine Immune (NEI) Center�" contacted all NJ legislators, stating in part, "it is unfortunate" and a "misguided" attempt "for an alleged patient advocacy group to oppose [our] efforts."
Please note, no one opposed their efforts, only the inclusion of Lyme disease. We applaud efforts to increase research and improve treatment for those negatively affected by any conditions that have no known cause, however, we know Lyme disease is not in that category.
An additional concern- this same group recently reassured NJ legislators that 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."
NJ Senator Bateman, the Resolution's primary sponsor, also responded to patients' letters confirming that the "NEI is fully supported by the 'Center for Disease Control and Prevention' and 'National Institute of Health.'"
Additionally, NJ Legislators have informed us they are being told that New Jersey doctors can treat Lyme however they want, which is not the situation at all.
This effort is spear-headed by CFS advocate, Kenneth Friedman, PhD, UMDNJ, and a Florida-based "neuro-endocrine immune" support group, P.A.N.D.O.R.A., for which he is Director of Public Policy.
The Center will be located at the University of Medicine & Dentistry of New Jersey, home to both Mr. Friedman and Robert Wood Johnson Medical School.
We are concerned that Robert Wood Johnson Medical School (deeply involved in the Lyme vaccine clinical trials & was home to someone acknowledged in the IDSA Guidelines) has published numerous articles strongly discounting the notion that chronic Lyme disease symptoms remain after standard IDSA treatment.
If symptoms remain, they are either considered by them to be psychiatric in nature or a result of autoimmune disorders, such as fibromyalgia and chronic fatigue syndrome.
At the recent IDSA Lyme Guidelines Review Panel hearing, it was reported that, "these syndromes have more in common than their apparent differences would suggest and may be best considered under the rubric of a Functional or more accurately, Dysfunctional, Somatic Syndrome."
Here is a sample note to paste on an email or adjust as you'd like.
Dear Senator,
Please remove the "Lyme disease" language from Resolution SR- 133.
Including research efforts or treatment for Lyme (Borrelia burgdorferi) in plans for a Center focusing on autoimmune disorders, especially in a highly endemic state like New Jersey, will not be advantageous to those with Lyme disease for many reasons.
Lyme disease has a known organism causing the symptoms patients experience, where as the disorders the proposed Center is designed to encompass do not.
Many patients find it difficult to be properly diagnosed and treated for their ongoing infections as it is; and diluting the ability to cure Lyme by eliminating its source, by focusing only on symptomatic treatment, will serve to do no more than extend the suffering patients experience.
Insurance companies already deny much needed treatment for Lyme disease and reclassifying it will only add to the problems.
Thank you for supporting a Center to help those with true autoimmune disorders, however, please do not put our future in jeopardy by lumping Lyme disease in with conditions with no known cause and no known treatment.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
I think we could also add comments that fibromyalgia for many people is actually the Lyme bacterial condition, and thus no longer an unknown condition;
and also, that an RNA retrovirus is currently being examined as a possible cause for CFS.
Posts: 13171 | From San Francisco | Registered: May 2006
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in there she has all the email addresses grouped together and a letter already written. ******************************************
njlymemom, would you edit your subject line showing the date you started this? getting confusing with tincups now and i anticipate another 1-2 more in NEAR future since this is a hot topic.
just click on pencil in your 1st post at very top; thx my friend. we neuro lyme folks need all the help we can get. hugs/kisses
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Looks like Robin 3267549 has her thinking cap on tonight.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
The NEI proposal states according to the above Pandora letter:
quote: The NEI Center� 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 are saying there IS a chronic Lyme disease... and this is backed by the CDC/NIH?
That is contrary to IDSA stance. CDC links only to IDSA.
CDC speaks with "forked tongue"? Or does Pandora overlook the CDC stance? Or hope that people will not see the contradiction?
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
The above Pandora letter also states:
quote: However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease.
Future classifications? Is IDSA planning to change criteria again?
They could not find any evidence for this before. Perhaps this NEI will be a funding source for future futile attempts?
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
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.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
thank you TC for the sample letter and set up for the emails
it is so hard for most of us to try and compose a simple sentence - this is very helpful
we all know the old addage "knowledge is Power" I nag my kids all the time with this
but when you are too sick, especially neurologically, to gain the knowlege- or to retain the knowledge - then power seems beyond your reach - and hopelessness can set in
power should not belong to only those who are healthy - and we cannot give up hope
do you think you can set up the letter in an additional post - with a title for those of us who are overwhelmed by the thought of trying to compose a simple letter with fear of getting it wrong
i plan to use your letter, and will explain why i needed to copy this letter to the senators -
are there laws that protect the handicapped from being neglected in this manner by their representatives...oh that is right - they would have to pass a law
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
posted
Thx for posting Ken Friedman's talk - I think it shows us what's on his mind and what we can be responding to.
And thx, TC, for all your help to everyone here!
Posts: 13171 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
North said...
"CDC speaks with "forked tongue"? Or does Pandora overlook the CDC stance? Or hope that people will not see the contradiction?"
Good points. This doesn't make sense to me either.
I wish they (PANDORA) would have mentioned this project to the Lyme community before they got in so deep.
For a handful of people (who I do believe have good intentions) to try to change the future of Lyme research and treatment by lumping us in with folks with disorders that have no known cause... well...
It's really unbelievable.
It is like me going to my legislators saying I want a Resolution that states heart patients are to fall under a new umbrella called "achy foot syndrome"...
Because some heart patients surely have had achy feet at some time or another.
And then too....
There is the CDC/NIH backing. What's with that?
Does this run THAT deep? Are they behind this?
It IS what they have wanted for us for a LONG time.. and to have the Sponsor and PANDORA to say they are involved...
Well, hmmmmmmm?????
If they knew anything about our struggles.. they wouldn't dare lump us with others in a place that we've been fighting for years on end... (Robert Wood Johnson)
A place that is responsible for so much of the Lyme suffering.
That is like the IDIOT who tried to make me relaxed by making a relaxation tape for me.. with me sitting there...
And he starts out his story of peace and calmness by saying..
"Imagine you are sitting in a field of tall grass by the woods edge."
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: 13171 | 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: 13171 | 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: 13171 | 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: 1034 | 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: 472 | 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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