Heaven Forbid they Propose a Bill Backing REAL Research....

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LymeEnigma
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Heaven Forbid they Propose a Bill Backing REAL Research....

Post by LymeEnigma » Mon 19 Oct 2009 8:46

Much time has passed since my last update. The main reason for this is the simple fact that I had made a firm choice not to let Lyme and its associated issues define me any longer; I set out to live my life despite my continued symptoms, whatever their cause. I realized, after too many years of watching the same people on the same message boards continue with the same ridiculous mantras, that my attempts at importing reason into the mix were futile. These same people are still sick, despite their years of heavy antibiotic use, hypobaric oxygen chamber sittings, alternative “protocols,” etcetera; despite my relatively limited treatment, it seems to me that my quality of life is far superior when compared to that of the die-hard antibiotic addicts, even if I am still very clearly disabled.

So why add another update now?

The other day, I received an e-mail from the chronic Lyme zealots, one I could not simply ignore, as I typically do these days. Like many of their typical mass mailers, the e-mail detailed the evils of the IDSA, and how this particular group of doctors is working hard to ensure that—for some unknown reason—those of us permanently afflicted with symptoms post-treatment must continue to suffer. This “call to action” caught my attention, however, not because of the typical BS included, but because of its even more-than-usual vagueness and off-the-wall accusations. This time, I could not just sit silent.

You see, ambiguity is their forte; it’s how they baffle (in my humble opinion) so many people with their BS.

This particular steaming pile consists of the assertion, depending upon which part of the e-mail one reads, that the state of New Jersey is attempting to classify Lyme disease (not even “chronic” Lyme, this time, strangely enough) as either an autoimmune disease OR a disease of unknown cause, and will thus fall among the ranks of other enigmatic illnesses such as chronic fatigue, fibromyalgia, Gulf War Illness, and multiple chemical sensitivity. Confused yet? Yeah, me too. Baffle them with….

Everyone knows that Lyme disease is caused by a spirochete; in the US it is usually caused by Borrelia Burgdorferi. To claim that ANYONE would be disputing this is simply ludicrous. However, numerous fringe Lyme groups are attempting to claim just that—with, it seems to me, the sole intention of scaring patients into jumping onto their newest bandwagon. “The evil IDSA is, once again, trying to take away your precious antibiotics; act now, or you’ll suffer for the rest of your sick, miserable life….”

Enough. Look at the research. Look at REAL, peer-reviewed, journal-published research, and you’ll see that for years doctors from all across the globe have addressed the many questions, issues, and contradictions that have, and continue to, surround the ever-growing Lyme controversy. They have also offered good evidence that Lyme disease can trigger autoimmune diseases in those predisposed. I’ll give you a few articles to get you started:

http://jcm.asm.org/cgi/reprint/43/2/850.pdf
http://www.ncbi.nlm.nih.gov/pubmed/19346313
http://www.ncbi.nlm.nih.gov/pubmed/18570749

You see, there are apparently certain proteins included in Bb’s make-up that hold uncanny similarity to proteins found in the human body. When the body sets off an immune response against Bb, it cannot simply tell the antibodies to attack only the proteins in question attached to the bacteria. The “self” becomes an equal target, and an autoimmune cascade begins. In some patients—like me, for example—the end result is autoimmune disease.

I just recently tested positive for lupus. My ANA was positive, as well as my anti-double-strand DNA test. Combined with my malar rash that comes and goes, my joint inflammation, and other lupus-consistent symptoms, I received a definitive diagnosis. Do I think there is no possibility that I still have Bb spirochetes hiding in my body? Absolutely not. The fact of the matter is I don’t know. All up-to-date, non-biased research indicates that Bb can persist in the body, even after months or years of treatment. Research also indicates that further antibiotic treatment will not change a patient’s prognosis. Please don’t hate me for stating this undeniable truth; I wish a few more years of antibiotics would save you from your suffering, but the evidence truly is against it.

So, where do we go from here? More Lyme rallies? More politics being imposed into the very different realm of science? More “calls to action” against a nameless evil made up by an even greater evil (again, humble opinion, here), intent on convincing you that they have all the answers and all nay-sayers simply want you, for some crazy reason, to remain ill? More scare tactics, threats, and pseudo-science? I say no. I say it is time to start asking MORE questions. It is time to stand up against the bandwagons and nay-sayers alike. I say it is time to find some real answers—and those answers lie in further research—research into antibiotic persistence, research into bacteria-induced autoimmune disease, and research into REAL long-term options.

I am not the enemy. I am ill, just like you, because my GP failed to diagnose me in a timely manner. However, I am no sicker than the masses who have received years of antibiotic therapy. If anything, I am healthier. I have not destroyed my immune system with years upon years of fruitless antibiotic therapy. I have, however, begun to treat my lupus with low-dose Plaquenil. Do I think this is the end?

No; this is only the beginning.

BTW, if you read the bill that LDA et. al are currently trying to knock, you'll see that this latest "call" is totally misinformed. NO WHERE IN THE WORDING DOES ANYONE CLAIM THAT LYME IS NOT CAUSED BY A BACTERIUM. NO WHERE DOES ANYONE CLAIM THAT LYME IS AN AUTOIMMUNE DISEASE, AND NOT A TRIGGER THAT MAY OR MAY NOT PERSIST AFTER ANTIBIOTIC TREATMENT. This bill is trying to get funding so that people like us can get real treatment. It seeks money for RESEARCH--for AIDS, for Lyme, and for many other ailments that make patients' lives a living hell--caused by illnesses that behave in enigmatic ways. Don't be fooled; READ THE BILL: http://www.njleg.state.nj.us/2008/Bills/SR/133_I1.PDF

Enough.

Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

Re: Heaven Forbid they Propose a Bill Backing REAL Research....

Post by Fin24 » Mon 19 Oct 2009 21:21

Hi LE

I was debating whether to post about this since I have several vested interests in this mess:
-my son has the neuro endocrine AND immune issues the NEI ( NeuroEndocrine Institute) may be able to address
-I too have many of the same issues
-I live in NJ and suffer at the hands of many Drs who believe Lenny and his gang and have to make an extremem effort to never land in the hospitals that may be affiliated to the new Institute

-I am so very tired of LDA and its misstated facts and the very real probability that this stems not as much from wording and censoring treatments ( as the insane and inane "calls to action" would have us all believing) BUT from the fact that the Queen wasnt asked or requested permission for "them" to do this.

I cant say Im not without my concerns about this Center, however

Its firmly attached to LifeLyme and I have asked them directly to answer a few questions and await their reply.( re: who the top researchers are, the medical director(s) for the NEI clinic, Board members of the NEI,etc)
Plus, that group and many of its Board are proponents and supporters of much if not all of Dr Klinghardts theories...and yes that worries me. You see if all of this is a smokescreen to get us Lymies in a tither so that Klingy can now make inroads into NJ, well, then I will be the first to insist MY state reps do away with the bill!!

I agree that LDA's concerns may be misplaced--I peekd in at Lymenut and they are indeed jumping all over the wording of the bill ( good little sheep that they are, following Queen's directions), and they are far more concerned that it states something like
"its generally accepted that Lyme, CFS etc etc are or can be neuro-auto-immune"..yadda--anyways the brains over at Lymenut assume that this will declare and forever define Lyme as ONLY an autoimmune entity of unknown cause.

As you did say, NOT SO. Its a fact--thats how the medical establishment DOES think of it and rightfully so: it CAN and MAY cause, trigger, effect,modulate a resulting neuroendocrine mess, a resulting autoimmune cascade and again as you said, NO WHERE does it deny etiology.

I will also say that IF I find out the Klingy has his hands deep in the pockets of the NJ NEI lab/clinic I will find my self in the unenviable position of agreeing with LDA ( not due to their reasons however) simply just to get the idea killed.

IF on the other hand, there are reputable researchers and medical directors involved, with proper oversight--I will again be first in line...to get it built.

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Spanky
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Re: Heaven Forbid they Propose a Bill Backing REAL Research....

Post by Spanky » Mon 19 Oct 2009 22:50

LymeEnigma: Much time has passed since my last update. The main reason for this is the simple fact that I had made a firm choice not to let Lyme and its associated issues define me any longer; I set out to live my life despite my continued symptoms, whatever their cause.
Good for you.
I just recently tested positive for lupus.
Sorry.
Please don’t hate me for stating this undeniable truth; I wish a few more years of antibiotics would save you from your suffering, but the evidence truly is against it.
I don't know...I am trying, still, myself, to keep an open mind...but I suspect (and based upon my own personal experience) that this is more likely true than not. I got off abx as soon and as quickly as I could when I felt they were no longer helping. And, it would seem that at least part of my difficulty has been due to an autoimmune thyroiditis, so I am certainly not hostile to the idea of autoimmune processes being implicated, either.


BTW, if you read the bill that LDA et. al are currently trying to knock, you'll see that this latest "call" is totally misinformed. NO WHERE IN THE WORDING DOES ANYONE CLAIM THAT LYME IS NOT CAUSED BY A BACTERIUM. NO WHERE DOES ANYONE CLAIM THAT LYME IS AN AUTOIMMUNE DISEASE, AND NOT A TRIGGER THAT MAY OR MAY NOT PERSIST AFTER ANTIBIOTIC TREATMENT. This bill is trying to get funding so that people like us can get real treatment. It seeks money for RESEARCH--for AIDS, for Lyme, and for many other ailments that make patients' lives a living hell--caused by illnesses that behave in enigmatic ways. Don't be fooled; READ THE BILL: http://www.njleg.state.nj.us/2008/Bills/SR/133_I1.PDF
This "bill" appears to be merely a non-binding statement of legislative intent. And as such, really has no operative effect. In laymen's terms, it's not a "law". (It doesn't even provide any funding mechanisms that I can see).

Simply a message directed to the governor (and Congress, it appears) saying, in essence saying "we think this is a good idea".

Really virtually completely meaningless as a substantive question or issue. No lasting effect.

I guess what is more interesting is the question of why the Pat or anyone else would think that anyone could LEGALLY define what Lyme disease does or does not consist of.

So far as I know, this is just not something the law can even address...(the concept is called a "non-justiciable" issue).

Nonsense.

Just more embarrassing clueless goofiness.

rlstanley
Posts: 1637
Joined: Mon 3 Dec 2007 2:53

Re: Heaven Forbid they Propose a Bill Backing REAL Research....

Post by rlstanley » Sun 25 Oct 2009 2:02

.
An Open Letter to the Lyme Disease Community Stakeholders‏

http://flash.lymenet.org/ubb/ultimatebb ... pic/8/2105
An Open Letter to the Lyme Disease Community Stakeholders‏

From: Alex (lymewarrior@inbox.com)

Sent: Fri 10/23/09 1:53 AM

To: lymewarrior@inbox.com
1 attachment
NEI Open ...doc (637.5 KB)


PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY

– 501 c 3 – ID # 550795076

C/O VIÑA + COMPANY,

255 Alhambra Circle, Suite 715,

Coral Gables, Florida 33134

Phone: 305-441-1591

Volunteer Help line: 954-783-6771 – http://www.pandoranet.info

Introducing the NeuroEndocrineImmune (NEI) Center™

A patient-driven grassroots project of P.A.N.D.O.R.A.
in partnership with
The Lanford Foundation-Lifelyme, Inc.
Science  Innovation  Chronic Illness  Solutions

October 22, 2009

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,

Marly "Marla" C. Silverman

Marly C. Silverman
Founder

P.A.N.D.O.R.A.

http://www.pandoranet.info

Sandi Lanford
Founder/President

The Lanford Foundation -Lifelyme, Inc.
http://www.lifelyme.org

You can direct additional questions you may have to either
Dr. Kenneth J. Friedman at friedman@umdnj.edu

Or

Lifelyme Inc., at lifelyme@yahoo..com
Sandi Lanford, Founder/President

The Lanford Foundation - Lifelyme, Inc.
Tallahassee, FL
http://www.lifelyme.org

Disclaimer:
The mission of "THE LANFORD FOUNDATION - LIFELYME, INC., is to provide educational information for anyone interested in tick-borne diseases, chronic infectious, systemic diseases and related disorders.

Information presented is intended only for educational exchange.

This information is not offered by LIFELYME as medical advice for anyone..

Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

Re: Heaven Forbid they Propose a Bill Backing REAL Research....

Post by Fin24 » Sun 25 Oct 2009 6:22

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 VERMONT dept of health??? theyre trying to build this in NJ and the foundations and the supporting groups are in Florida.

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

what I DONT like as a NJ-ite and fellow Lymie/parent of Lymie is that now they are starting to sound as ridiculous as LDA. They understandably feel threatened and so have countered the LDA et al salvo but it seems to me like a bit of OVERKILL.

FYI

Dr Kenneth Friedman is a PHD, associate professor in the pharmacology and physiology dept at the Newark campus of UMDNJ. His areas of interest/research are the alternative treatments for fibromyalgia and CFS.

Hid PhD was from Stonybrook, 1970, on

he worked with Vermont CFIDS assn and thru them advised the Vt government about various topics in CFS
AND here is an interesting little connection:

PANDORA= Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy
Ken Friedman = executive board secy and chairman of Public Policy Committee
http://www.pandoranet.info/drkenfriedman.html

He does a talk on " the Positive Side of Lyme"
http://www.pandoranet.info/httppandoran ... tions.html

and I am NOT happy
here is the summarization of this powerpoint and his basis of philosophy re: Lyme
Numbers refer to his slides without his title slide( BOLDED are My areas of grave concern, comments in red)
1.Intro-Lyme Disease is a disease,satisfies criteria of a "disease":
It is an impairment of the normal state of living or of normal organ function that interrupts or modifies the performance of the vital functions.
It is manifested by distinguishing signs and symptoms.
2.Intro-criteria of "disease" contd
It is a response to environmental factors (malnutrition, industrial hazards, or climate), or to a specific infective agent (worms, bacteria, or viruses), or to an inherent defect ( a genetic anomaly), or to combinations of these factors.
3. Intro-Lyme Disease is a neuroendocrine immune disorder because:
It can affect the nervous system, the endocrine system and the immune system.
Its signs and symptoms overlap the signs and symptoms of other neuroendocrine immune disorders.
NOT ALWAYS and not in all patients!!! this is too much of a blanket declaration!!

4. Intro -list of 'OTHER NEIDs' includes CFIDS/CFS, fibromyalgia,Gulf War Syndrome and Multiple Chemical Sensitivity
Im starting to see Pat Smith's point here

5.intro -states Lyme is the only "disease" while others are syndromes or"illnesses"
then defines both syndrome and illness

6.classification-table of the NEIDs he mentions--they ALL are "illnesses" even Lyme but only Lyme is a "disease" too--the rest are also "syndromes"

7.chart of FDA approved meds for each--only Lyme and FM have check marks

8.Hypothesis--Lyme being a disease means greater advances in dx, tx, and Rx--HA HA HA

and here we have the reason for their linking to Lyme--they want to grab some of our funding

then this slide starts to make ME "ill" as it says this
Lyme is
EASY/easier to diagnose, due to known infective agent making testing possible
easier to treat due to knowing the agent so there can be development of therapeutic agents
easier access to SSDI based upon clinical data that enables benefits to be given
9.greater advances can/will occur for Lyme contd
etiology and pathophysiology are easier to uncover
knowing causative agents permits development of animal models
says WHOM???? and then why in 20 years hasnt any progress been made in these areas??

10.his methods were to research the federal data bases of their response to NEIDS
11.chart for who the lead agencies handling NEIDS are
Lyme-NIH/NIAID/CDC
CFS-NIH/ORWH
FM-NIH/NIAMS
GWS-DOD/VA
MCSS-NIH/NIEH
THEN there are FIVE slides showing how much fed SUPPORT for Lyme there is ( gee and I wish I had some of that benefit from all that support, dont you??

12.
in 10 yrs allocation for Lyme grew at CDC
obligations for Lyme disease at NIAID have grown in inflation-adjusted dollars, from about $124,000 in FY 1991 to $3.5 million in fiscal year 2000
13.
NIH carries out its Lyme disease activities primarily at NIAID but also at other institutes: the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the National Institute of Neurological Disorders and Stroke (NINDS), and the National Center for Research Resources (NCRR).
14.
NIAID conducts clinical research related to Lyme Disease at the Clinical Studies Unit on the NIH campus
NIAID conducts laboratory research at the Rocky Mountain Laboratories in Hamilton, Montana.
15.
NIH has funded research on:
• the basic biology underlying the development of a vaccine for Lyme disease, later used by SmithKline Beecham to develop a Lyme disease vaccine;
animal models for the development and testing of other potential Lyme disease vaccines
16.
NIH has funded research on:
tick ecology and control
the relationship between maternal Lyme disease and congenital abnormalities in newborns.
umm they have done enough research on congenital Lyme and still they deny it?? as Ive stated, does this guy really think we Lymies have all the research and answers we already need???

then there are 5 whining slides how CFS is an ORPHAN
17.
CFS is homeless at the NIH - There is no institute affiliation.
There is no intramural CFS research at the NIH.
The Office of Research on Women’s Health and co-sponsoring Institutes and Centers (IC’s) solicit grant applications proposing to examine etiology, diagnosis, pathophysiology and treatment.
NIH encourages ongoing, investigator research through Program Announcements (PAs).
18.
The CDC conducts CFS Research. From the CDC website:
“CDC has conducted a study of CFS and similar illnesses in 13 counties in Georgia. Interviewers telephoned a randomly selected sample of 17,000 households and asked the selected households a short set of questions to identify household members who may have CFS and similar illnesses.”
19.
From the CDC website (continued):
“Results from this study are being prepared for publication.”
The results have been published.
The data was sent to multiple groups outside the CDC for analysis.
Multiple interpretations of data were obtained.
Articles are difficult to retrieve.
and this is different than Lyme research HOW???

20.
From GAO report of June 2000:
“The Centers for Disease Control and Prevention (CDC) CFS program for the past 12 years has focused largely on the prevalence and the causes including the search for infectious and immunological abnormalities.”
21.
“The National Institutes of Health (NIH) has focused on CFS' effects on bodily systems and possible causal agents.”
“At CDC, the lengthy and uncertain process for allocating CFS funds has delayed particular projects.”
“CDC's redirection of funds has resulted in reductions in CFS research funding.”
2 slides about poor FM patients and lacks
22.and 23. what FM research is being sponsored and he ends with
Author comment:
Last initiative was a request for (research) applications by Feb. 10, 1994.
9 slides re Gulf War Syndrome and the lack of support etc
24-32 snips.quoting GAO of 2004:
“The federal focus on Gulf War-specific research has waned.”
“In recent years,VA and DOD have decreased their expenditures on Gulf War illnesses”
Although the DOD has historically provided the majority of funding for Gulf War illnesses research, DOD officials stated that their agency currently has no plans to continue funding new Gulf War illnesses research projects.”
pretty graph showing how from 2000-2003 funds for GWI research fell--but what about in past SIX yrs???

instead of GWI-
“Emphasis is on PTSD and other things related to the current fiasco.”
five slides whining about poor MCSS being orphaned too:
33-37. snips-
NIEHS website for MCSS is inactive – no information is available.
No other source of federal funding found.
No GAO report found.
but then this
NIEHS is sponsoring RFA-ES-07-008
Release Date:  October 5, 2007
Earliest Anticipated Start Date: April 1, 2009
applications from qualified institutions for support of Environmental Health Sciences (EHS) Core Centers.
HERE is the reason for this big push for NEI in NJ for good old Ken-as a reward for all his hard work [/color]:
From the RFA:
A Core Center Grant is an institutional award to support centralized scientific resources and facilities shared by investigators with existing research projects.
NIEHS plans to award up to $5 million in FY 2009 to fund three grants in response to this Funding Opportunity Announcement (FOA).
they need the place to exist so they can nab grant $$$ !!!!!!!!!!!!!!!

then there is a pretty bar graph showing how LYME has nabbed most of the so called NEIDs funding 2003-8

then there are 3 nauseating slides IMO since I am one of the thousands who hasnt gained any of this so called benefit or the "positive side of Lyme" as he slammed home:

41-43.
Lyme Disease, in comparison to other NEIDs, has made the most progress in terms of Dx, Tx and Research. (The positive side of Lyme.)
NIAID, as the lead agency for Lyme, lists the most ambitious agenda for dealing with any NEID.
.
As predicted, Lyme is the only NEID for which animal models exists.
The existence of an animal model should accelerate elucidation of the pathophysiology, treatment and drug development
The ability of the Federal Government to respond to Lyme is perhaps related to Lyme being a disease (having a known cause).
is he kidding me??????????

then comes the kicker--if youre still with me: he proposes the establishment of these NEI centers in states!!!
slide 45
Establishment of state-supported Centers of Excellence in multiple states.
Establishment of federally-supported Centers of Excellence geographically distributed throughout the U.S.
Establishment of an umbrella organization representing all NEIDs for the purpose of more effective lobbying: the NEID’s NAG – NEID Advisory Group.
they ARE trying to umbrella LYme in there and damn it to hell--I now agree with Pat Smith/LDA


slide 46.
“One Community,
One Cause,
One Voice”
Created for P.A.N.D.O.R.A as a slogan to unite the CFS Community of Florida.
Can it; should it be used to unite the NEID community nationwide?
http://www.pandoranet.info/httppandoran ... tions.html


I say a big fat resounding NO, how about you???

Sandi Lanford of the Lanford foundation AND LifeLyme is also on the Bd at Pandora
http://www.pandoranet.info/bdirectors.html

Ill leave it to others to vet the list of MDs on the Bd and the other players--theres just so much crap I can bear in one sitting.

from http://www.monkeyswithwings.com/fishorwar.html Fish or War,on the lacks of funding for CFS, 2004
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.

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: Heaven Forbid they Propose a Bill Backing REAL Research....

Post by Martian » Sun 25 Oct 2009 14:56

LymeEnigma wrote:I realized, after too many years of watching the same people on the same message boards continue with the same ridiculous mantras, that my attempts at importing reason into the mix were futile. These same people are still sick, despite their years of heavy antibiotic use, hypobaric oxygen chamber sittings, alternative “protocols,” etcetera; despite my relatively limited treatment, it seems to me that my quality of life is far superior when compared to that of the die-hard antibiotic addicts, even if I am still very clearly disabled.
I think it is important to note that those people are not representative of the Lyme patients group. Those who stay active on boards for years, are mostly those that stay ill. But in the first place, you don't even know if all those people really (only) have/had Lyme, and those who do may simply have been using inferior treatments, like dubious unconventional methods, but also including certain antibiotic courses.
LymeEnigma wrote:Do I think there is no possibility that I still have Bb spirochetes hiding in my body? Absolutely not. The fact of the matter is I don’t know. All up-to-date, non-biased research indicates that Bb can persist in the body, even after months or years of treatment. Research also indicates that further antibiotic treatment will not change a patient’s prognosis. Please don’t hate me for stating this undeniable truth; I wish a few more years of antibiotics would save you from your suffering, but the evidence truly is against it.
I certainly think a longer term treatment with a sensible antibiotic course will be helpful for some people, but I really have my doubts about treatments lasting several years or without an endpoint, especially when patients aren't improving or even deteriorating.

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Spanky
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Re: Heaven Forbid they Propose a Bill Backing REAL Research....

Post by Spanky » Sun 25 Oct 2009 18:44

rlstanley wrote:.
An Open Letter to the Lyme Disease Community Stakeholders‏

http://flash.lymenet.org/ubb/ultimatebb ... pic/8/2105

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.

Yes.

And it might also raise the fascinating question of whether certain 'activist' groups have become so intensely involved in the "persistence' theory...have taken "ownership" of it...or become, themselves, owned by it...that they regard the mere suggestion of other theoretical explanations as some sort of threat to their existence.

And...reading some of the rantings and ravings over at LymeNUT...I found this, posted by "SandiB":
===========================================================================================
SandiB:

posted 10-13-2009 04:27 PM
--------------------------------------------------------------------------------
You can view the response to Pat's letter to the NJ Senators at the website:
www.lifelyme.org

I believe there is some misunderstanding by the Lyme community concerning the difference between a Resolution and a Bill.
"What's the difference between a resolution and a bill?"

It's easy. Resolutions essentially allow the legislature to recognize people, events, groups, issues without actually making law. It is done to acknowledge an event or in this case moving forward on a project. A Resolution isn't needed to move forward on the NEI Project as Resolutions don't have the force of law. If passed, they inform the public of the active involvement in an endeavor.

Bills are how law is made. They have to be written and sponsored by someone, and they then have to pass both houses after full debate and public hearing before they can be sent to the governor for his signature (and governors often veto bills). This resolution isn't a bill.

I encourage you all to read the response at the Lifelyme website. Take care.
SandiB
===========================================================================================

(My emphasis).

And she's absolutely right.

So why all the fuss?

And the fact that this thing has NO substantive impact whatever and cannot 'define' Lyme disease one way or another, doesn't seem to have deterred them at all...

Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

Re: Heaven Forbid they Propose a Bill Backing REAL Research....

Post by Fin24 » Sun 25 Oct 2009 19:07

the resolution SUPPORTS the building and funding of the center--it gives it "imprimatur". defining it as a bill IMO isnt the point despite LDA sidetracking as usual.

and after what Ive read about PANDORA/lifelyme "philosophy" and about their "leader" Ken Friedman thinking Lyme is easy to dx, tx and rx...and that piggybacking onto Lyme will afford those "other illnesses" their fair share of research and funds...further he wants to UMBRELLA Lyme under HIS NEI classification for ALL things political, medical,financial.

I dont think any of that is in any Lyme victim's best interest.

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