An Open Letter to the Lyme Disease Community Stakeholders
Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Center� and the Inclusion of Lyme Disease
Dear Friend in the Lyme disease Advocacy Community:
We are reaching out to you because of the recent developments within the Lyme disease advocacy community that are creating much confusion and misunderstanding of what the NEI Center is all about and what our mission is. We want to clarify false rumors that are being spread via the internet.
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.
The inclusion of Lyme disease within the illnesses that the Center will investigate will address and enhance the efforts not only to prevent but possibly to eradicate Lyme disease. The passage of this resolution is in reality a moral and significant victory not only for the citizens of the great State of New Jersey, who are currently suffering with the devastating consequences of persistent or chronic Lyme Disease, but will also impact the entire country. The passage of this resolution will be an additional, welcoming lifeline for the Lyme disease patient community.
For far too long healthcare challenges have silenced the voices of many enduring chronic or persistent Lyme Disease, as well as the other illnesses that the Center embraces. Passage of this resolution in its entirety will certainly enhance and give these individuals a strong voice, allowing them to act as agents for change within their own community, and the opportunity to truly make a difference for others, their families and more importantly for themselves. To us, the founders of the NEI Center�, we strive for these results and we view them as priceless.
In Good Health,
Sandi Lanford
Sandi Lanford
Founder & President, The Lanford Foundation - Lifelyme, Inc.
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 not effect the work, fundraising and focus of LDA...so no need to create "spin".
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. It is not just lyme. 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! Our lives and our future generations are at stake.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
The problem some people have with this is the possible lack of control over the direction this center will take, how they will use the research and who will do it.
What will be done to ensure that lyme is not consigned to autoimmune hell, so that steroids become the chosen treatment?
Considering how often we have been cheated in the past, it is not unreasonable to be suspicious.
The people who are in favor of this may be naive about the problems of control. Their goals are admirable.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I have a problem with lumping Lyme disease in with autoimmune diseases which have no known cause. It takes the focus away from preventing tickborne diseases and also researching other unknown tickborne pathogens.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
lp,
would you show here's bettyg's broken up version of the below post and show this link at the top of yours before you show your text for us NEURO LYME folks? big thanks
The Marshall Protocol may not be for everybody (I never did it) but the scientific evidence is there.
New concepts are hard to embrace at first. The NEI Center is a new concept.
I understand why people view it with intrepidation.
But if the proposal is true to it's word, and the center comes to fruitition, this could be a chance for the Lyme community to come together and support it rather than feel threatened by it.
Thanks for the post, lightparfait!
There is always something new to learn.
Peace
Posts: 163 | From New Jersey | Registered: Oct 2009
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Though I don't know much about the controversy, just from reading Fin24's blog post someone linked to, here are the problems as I see it:
quote: AND my emails to Lifelyme are unanswered--they stated theyd prefer to speak on the phone ( presumably to avoid placing anything in writing) and then 3 phone calls and messages have yet to be returned
All I asked was the names of the Bd of Directors and the current roster of researchers for this new center
Okay, that may be a legitimate complaint.
quote:FYI and why I as a NJ Lymie do NOT want this place in this state Dr Friedman's views about Lyme Dr Friedmans affiliation and philosophy that is shared by Sigal et al Dr Friedmans bias against Lyme due to his feelings that CFS/FM etc have been overlooked while Lyme is the favored child
These assumptions on Fin24's part are just that. I find no evidence establishing that Dr. Friedman shares any affiliation or philosophy with some of the IDSA bunch like Sigal. If it is true, then she needs to show some real evidence.
I also find no `bias against Lyme' when viewing the ``Positive Side of Lyme' powerpoint presentation. Fin has totally misinterpreted - or misrepresented - the statements in that presentation. Dr. Friedman was not suggesting that Lyme is easy to treat or diagnose, nor was he inferring anything about Lyme being `the favored child' by comparing dollars for funding among the various disorders.
Now, here's where I think the real problem might lie. Having watched Cave76 and Fin24 here at LN for quite some time when they were here, anyone who suggested an `alternative' or non-pharmacological treatment for Lyme Disease was accused of undermining the collective cause of the Lyme Community. (After all, if Lyme can be `cured' with herbs or vitamins or Rife, etc., then it will never be taken seriously by the medical/scientific community.) Perhaps the fact that Friedman is interested in pursuing this type of treatment for FM pain is the real `red flag' for Fin and Cave.
quote:About the Author: Kenneth J. Friedman, Ph.D. is an Associate Professor of Physiology and Pharmacology at the New Jersey Medical School located in Newark, NJ. He has conducted both basic science and clinical research. Dr. Friedman has received funding from the National Institutes of Health and was employed on its Bethesda (MD) campus as a Staff Fellow. His daughter contracted a CFS/FM illness in 1993 which spurred his interest in CFS/FM. He is currently researching non-invasive, non-pharmacological treatments for the reduction of the chronic pain associated with FM. [from the Fish or War presentation, which I did not view] http://www.monkeyswithwings.com/fishorwar.html
As to lumping Lyme in with other disorders, how many times has discussion come up here at LN about joining forces with other groups (like MS, ALS, Lupus, etc.) so we'll all have a bigger voice when it comes to activism? I think that was the point made in the PP I viewed.
I do think Sandi Lanford has her heart in the right place.
So, that's my 2 cents worth based on not a whole lot. So, I'll keep quiet now. There really isn't much to go on without a lot of digging. But I do have to consider the source of the referenced objections in the blog post and judge those objections based on past experiences.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
There has been plenty of discussion about this in Activism, which is where this post belongs.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Just based on history and subtle between-the-lines stuff, I think this is NOT going to be in our favor.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Truthfinder...you are right on!
Posts: 1009 | From NJ | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Truth...
You said.. "Fin24's blog post someone linked to..."
That's a real credible source!
Anyhow.. someone sent that to me... and to see those who have been banned from all (or nearly all) Lyme sites for bad, hateful behavior....
It is strange to see them speak out against the center ... for the simple fact they are AGREEING with us.
They even admit it is weird to agree with the majority of folks NOT wanting this merger... and hard to support the side of those they have bashed unmercifully for years.
I am not even sure they realize the medical director is a marshall protocol supporter.... I haven't reread their stuff...
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Are any of you aware that Fin has taken her son to Zhang in NY & is on modified Buhner herself?
They are NOT anti-alternative, they are anti-'taking advantage of Lyme sufferers' and tend to get hostile when they think someone is trying to. They research EVERYTHING, alternative or not it doesn't matter. If they can't find supporting studies they look to research credibility.
Personally, I don't think that's wrong to do and I appreciate when they share their findings with me. I'm still free to make my own decisions and do whatever I want, even if I should choose to challenge or ignore their findings.
The problem Fin was pointing to in that quote was that his DAUGHTER has CFS/FM, which I believe has had even less funding than Lyme research. If he believed her illness was caused by Lyme, he would be going after Lyme directly.
What's the motivation to include a disease with a cause & more funding under his umbrella? Why the push to keep Lyme on board as a Neuro Endocrine Immune Disorder? It's not an immune disorder, it's a DISEASE!
My MS symptoms resolved with antibiotic therapy, how could that happen with an "immune disorder"?! It can't.
I have had CFS/FM symptoms. Am I willing to let them tell me it's just my immune system gone wacky and I need 20 different meds/supps to address that? No.
I herx, I have cyclical fluctuations which correspond to the replication cycle of Bb. Can my immune system do that by itself? I sincerely doubt it.
If he gets all the funds that would be allotted for research, where do you think the bulk of it goes? My bet is CFS/FM.
Which actually MIGHT not be so bad if they finally prove a link to inadequate treatment of Lyme & co-infections and don't spend all their time researching anti-depressants etc.... looking for symptomatic treatment that allow infection to remain unchecked, because the Federal government takes the position that Lyme is easily diagnosed & easily cured.
They did say that they go by the information that is supported by the CDC regarding Lyme disease diagnoses & treatment, did they not?
The fear is that preconceived notions about "Chronic Lyme" might lead to the same half-arsed research, structured to support an existing know-it-all-world-is-flat opinion instead of truly seeking answers.
I'm sorry but I find it a bit disturbing that you are attacking people here, where you KNOW they can't post to defend themselves and are changing the bolding in their quotes as though they themselves had posted it.
If you want to challenge them, why not do it on the blog that was linked so that they might have the benefit of supporting their statements?
I read the resolution & questioned "why on earth are we all against an opportunity to get more research done?". I was told that they initially had the same thought but were told they needed to look deeper. Their digging uncovered unsavory associations & statements made elsewhere as to motivation to climb aboard & commandeer our ship.
If anyone wants to know the sources of the "dirt", go to that blog and ask questions. I'm sure they'll be happy to post supporting documentation for their opinions, if they haven't already done so.
I'm PRAYING that this will end up being a good thing for us. I just don't like where it's coming from. I'd feel much better if people who've actually cared about us all along and fought so hard all these years to gain some ground had something to do with this.
I don't like that this is happening just as IDSA should be delivering a verdict on those guidelines.
Truth- I hope you're right about Sandy Lanford & I hope she hasn't been snowed by Friedman.
I understand the hurt feelings on both sides. You've all said some pretty mean things to & about each other. I just wish we could all get on the same "side" & stay there. We ALL just want to be well and help others and when WE fight with EACH OTHER, we just weaken our stance.
United we stand (a chance), divided we get told "it's all in your head", "you don't LOOK sick", "that's enough Tx, you're cured""Look at this study we made that says your insurance company doesn't have to pay if YOU think you still need abx Tx, you're NOT a doctor after all so what could you possibly know about your own symptoms"......
I believe that YOUR hearts are in the right place, but your words are mean, vindictive and intentionally hurtful to fellow sufferers. This makes me sad.
I haven't looked over there, so please let me know if they're saying mean, vindictive, hurtful things too & I'll go tell them the same thing.
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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