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Discussion on WPI facebook of a NEI center in New jersey???

Discussion in 'General ME/CFS News' started by hensue, Mar 17, 2010.

  1. valia

    valia Senior Member


    Why would Pandora or NEI want to include Lyme disease?

    I don't believe anyone is saying Lyme is a disease and M.E/Chronic fatigue syndome is not (although reading here at times, anyone might think saying a couple of Hail Mary's or learning about one's ability to deal with stress was a cure for M.E/CFS).

    Pandora include a whole list of syndromes/illnesses with as yet no known cause, Lyme disease has a known cause, with tests and treatment (although treatment is controvercial).
  2. Cort

    Cort Phoenix Rising Founder

    Basically for me the question is very simple, if Dr. Klimas and Dr. Bell and Marly Silverman and Mike are on board then I don't have any questions about it. I realize not everyone knows all of them and I only know Dr. Klimas and Dr. Bell by reputation but these are all great people some of whom have dedicated their careers to this illness or who have had (have it actually) themselves.

    (The phrase 'No good deed goes unpunished' - by someone comes to mind)

    This is a project that can only help us. There should be a center in every state! Every state has their heart center, etc. Why not a neuroendocrineimmune center in every state?

    Here's the blog I wrote
  3. Otis

    Otis SeƱor Mumbler

    Sounds Interesting

    UPDATE: While I was typing the following (ever so slowly) Cort was posting the link above which provides much more info. Please have look and consider signing the petition. I'm going to email blast my friends today - something I've never done. My post below is a bit OBE but perhaps entertaining... if you like uninformed, albeit supportive, rambling. :tongue: Cort, I don't need any help looking silly man.... :Retro smile:

    Please keep us informed as this sounds very promising. Glad you're thinking big. I can't filter all the noise on FB so I generally don't try, so as this moves forward, please keep us informed here on PR.

    The North-East a great location. The area is very underserved. What exit? :Retro wink:

    I'm not sure if you're thinking about satellite locations yet but the Denver area would get my vote. The West is a big place and the WPI is a two-day drive for those who can withstand it. All we have is is an FFC (don't get me started!) and I think the local patient community would be help in many ways to support something like this.

    What type of legisation will this be? Are you looking to get some funding?

    I know even a non-profit has to pay the bills but if there is a way to help some patients financially that would be a great service as we all know what these illnesses do to our finances. Perhaps study participation in exchange for care. We also need to find the next generation of CFS docs and this might be a way to 'grow' some.

    Just some thoughts. I get carried away... :ashamed: I can't help but dream a little. :innocent1:

    Best of luck,
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    CFSAC has been recommending "centers of excellence" that would provide care, training and research. It hasn't happened.

    Like everything with this illness, we just have to do it ourselves without the federal government.

    Whittemores said we will do it ourselves. They got the state to help.

    Klimas said she will do it herself. In January, she opened one.

    Now, these two say they will do it themselves.

    Reminds me of an inspiring song. Although the gender mentioned here is generally true, let's include the men who are "doing it for themselves."

  5. JT1024

    JT1024 Senior Member

    The reason Lyme might have been included is provided in the excert below:

    Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia
    May 15, 2002
    By Sam Donta,M.D.


    The diagnosis rests heavily on the clinical symptomatology.
    When there are clinical signs, e.g., rash, aseptic meningitis,
    optic neuritis, arthritis, an appropriate differential
    diagnosis must be pursued. On a clinical basis, "chronic
    fatigue syndrome" or "fibromyalgia" cannot be readily
    distinguished from chronic Lyme Disease. Indeed, accumulating
    experience suggests that Lyme Disease may be a frequent cause
    of fibromyalgia or chronic fatigue (8,12).

    Other microbes have been proposed as causative agents of multisymptom disorders that are being termed chronic fatigue and fibromyalgia, especially
    more recently recognized mycoplasma species such as M.fermentans
    and M.genitalium, but definitive proof of cause and effect has
    not yet been established (6, 23).

    There has been an attempt to separate "late" Lyme Disease
    from "chronic" Lyme Disease, the former being manifested by
    objective signs of arthritis or neurological disease (32).
    Some have denied the existence of chronic disease, inferring
    that these patients suffer from psychiatric disorders; some
    have used the term "chronic" to mean post-treatment disease
    ("post-Lyme"), assuming that the infection has been treated,
    and the remaining symptoms are in the same realm as those
    patients who have "fibromyalgia" or "chronic fatigue" (27, 30).

    Full text of article here:

    There is substantial info on the internet surrounding "chronic Lyme".

    Hope this helps people understand why the Lyme group was brought in.

    ~ JT
  6. Gerwyn

    Gerwyn Guest

    interesting CFS and ME seen as two seperate entities
  7. Lesley

    Lesley Senior Member

    Southeastern US
    Tina, you are so right. I think this belongs on Koan's "Be the Change" thread too, so I'm going to repost it there. Hope you don't mind.

  8. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    Go ahead.

    I enjoyed the song and the inspiring video.

    Folks, begging and complaining time is over. Over 20 years of that has produced....... well..... more reasons for begging and complaining. We have enough numbers that with leadership we can do much of this ourselves.

  9. Gerwyn

    Gerwyn Guest

    i know I,m being an idiot but someone mind explaining to me why would this be a bad thing it seems very positive to me from across the pond
  10. Andrew

    Andrew Senior Member

    Los Angeles, USA
    So what is the status of the center? Does it still have a chance? Has the progress toward getting a vote been seriously damaged?
  11. valia

    valia Senior Member


    No it doesn't

    Unless I was to believe that all 3 "fibromyalgia", "chronic fatigue syndrome" and "Lyme disease" are psychiatric disorders, which I don't.
  12. JT1024

    JT1024 Senior Member


    The only reason I posted the article is because Dr. Donta references Lyme, CFS, and FM as having overlapping symptoms. That was the whole point.

    I was trying to answer the question posted "Why was Lyme Disease included with the other neuro-immune illnesses?" (ME/CFS, FM, GWI). While the cause of Lyme has been identified, it is also a neuro-immune disorder.

    While ME/CFS/FM/GWI have been trashed as pschyiatric, Lyme is now only trashed because there are disagreements in the duration of the illness. While Lyme patients often exhibit symptoms after courses of antibiotic therapy, not all in the medical community believe that "chronic" Lyme exists. That is most likely where the overlapping symptoms occur.

    I would never suggest that any of these illnesses are of psychiatric origin. I have CFS/FM myself and I've been fighting a losing battle for 15+ years. I'm trying to improve my health and stay employed while barely functioning.



    Hi Valia,
    This is Marly Silverman, from PANDORA.

    I believe I need to answer the question you posed here.

    First of all, it is important to note that PANDORA embraces Chronic Lyme Disease aka persistent Lyme disease. We do it for many reasons as it is stated in our mission statement below.

    The biomarker issue is a good point and we are fully aware of it as it was described on a presentation by Dr. Kenneth Friedman (Chronic Fatigue Syndrome/Fibromyalgia: Similarities, Differences, and Overlap.)

    But due to the overlapping and similarities, we ask: Why there are individuals who once infected with Lyme disease do not recover despite short and or long term antibiotic treatments? The same question can be posed for individuals diagnosed with CFS-ME who have HHV-6, EBV, CMV, Enteroviruses, and other opportunistic virus, who after short and long term anti-virals as well as antibiotics do not get better. What is it that make our immune system work in this way. The symptomology of chronic Lyme disease patients is very similar to CFS-ME, FM, GWS, MCS patients. In the ME-CFS communities across the U.S. and overseas too, individuals originally diagnosed with CFS-ME or FM and even MS, Lupus or RA after years are finding out that based on newer and better testing technology they have Lyme Disease. So what happened here? Did they have Lyme disease to begin with? Were they bitten by a tick and due to their immune system deficiencies they cannot fight the bacteria and the pathogens of Lyme disease and therefore they cannot recover from Lyme disease?

    The quality of life issues that individuals with CFS-ME experience are identical for individuals with GWS, MCS, FM and Lyme disease. The lack of physicians, well accepted treatments, medical insurance issues, controversies on disability issues and public ignorance and acceptance are the same.

    The NEI Center mission statement states: The NeuroEndocrineImmune (NEI) Center is a community, patient-driven grass roots project of P.A.N.D.O.R.A. in partnership with the Lanford FoundationLifelyme, Inc. It will be the first research center to incorporate biomedical engineering, scientific, and clinical research and integrate patient computer-aided disease diagnosis and treatment (CADDT), which was specifically designed for multisystem illnesses and complex diseases. Guided by medical scientists and clinical researchers, with pertinent social services, the center staff will enhance the quality of life for millions of patients worldwide. The Center and its satellite locations will strive to facilitate cooperative and authoritative educational resources in clinical research, medical ethics, accountability, and patient/caregiver education, with the goal of providing new, integrated treatment programs for complex chronic illnesses.

    The cornerstone of the NEI Center is that discoveries and advances made in any one of the neuroendocrineimmune illnesses: chronic fatigue syndrome (CFS), myalgic encephalomyelitis or encephalopathy (ME), fibromyalgia (FM), Gulf War syndrome/illness (GWS/GWI), multiple chemical sensitivity (MCS), environmental illness (EI), chronic or persistent Lyme disease (CLD-PLD), Alzheimers Disease (AD), and autism, will be applicable and beneficial to other neuroendocrineimmune illnesses, thereby bringing us closer to a cure.

    And as far as the adversary position and the backlash that we experienced from a Lyme disease organization located in New Jersey where the NEI CENTER will be located , I can assure, was vicious, brutal, disingenuous, unwarranted and counter-productive. In fact their behavior resulted in the now well known and heart-wrenching testimony of Dr. Kenneth Friedman at CFSAC October 30 meeting. The video has been removed by Luminescent (Ben) but there were 1,753 viewis in a few weeks.

    This organization targeted Dr. Friedman in such a way, that I believe it has resulted in his superiors at UMDNJ forbidden him from volunteering his time as one of our advocates. We kept these issues under the radar because our goal will never be or it is not to engage one community of patients against another, specially if we embrace both illnesses. Our mission is to engage and partner with other organizations not to engage in a cat fight wasting time and resources and stealing productive time from the mission. P.A.N.D.O.R.A.'s mission states otherwise.

    The misinformation and dis-information promoted by this organization seems to be their consistent method of operating on matters that involve Lyme disease. They seem to be territorial and they do not work well with other organizations. Click here for an open letter from the National Capital Lyme and Tick Borne Disease Association.

    Here is the link to our
    press release regarding the NEI Center.

    Thank you for this opportunity to share with you our advocacy work. I urge you all here to sign off on the petition to the U.S. Secretary of Health. I ask you and others in this forum to support our efforts by promoting our twibbon on your Twitter profiles and on Facebook profiles as well.

    Thank you so much for your time.

    In Good Health and In Beauty,

    Marly Silverman, Founder, of P.A.N.D.O.R.A. and of the NEI Center(TM).

  14. valia

    valia Senior Member

    Hi Marly, thank you for your reply.

    I wasnt aware of the problems you have had with this New Jersey Lyme disease organization and I am very sorry to hear what happened to Dr. Friedman.

    However I understood that the Lyme community in general were not happy to be under the PANDORA umbrella and if what I have read is true, I have to agree with them. This was posted on CALDA:

    New Umbrella for Lyme Disease?

    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.

    Concerns- State and National

    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.

    More Details About Proposed Center

    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."

    Apart from this I have heard only good about PANDORA from the ME/CFS community and wish you all the best.

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