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» LymeNet Flash » Questions and Discussion » Medical Questions » Edit- FRIDAY- WATCH LIVE CFS- PANDORA- Proposed NEI Center

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Author Topic: Edit- FRIDAY- WATCH LIVE CFS- PANDORA- Proposed NEI Center
Tincup
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Interested in PANDORA's activities?

Since they are new on the scene, you may not have heard of them.

And...

You may want to learn about them, since they will soon be taking you under their wing... like it or not... and helping to decide your fate.

For those who don't know... they are the ones (no Lyme experience or knowledge) who are promoting a new Center for "neuroendocrine immune disorders"- a name, by the way, that they made up... that actually has no established medical or scientific basis.

PANDORA, much to our dismay, recently added Lyme disease to their Center's list of autoimmune conditions that have no known cause (origin).

They are planning to move forward... without your knowledge or consent... and in spite of your overwhelming objections to their plans ... and have recently reassured assured legislators YOU now think it is ok to do so...

And keep Lyme disease in their Resolution for this Center.

And then direct the Lyme Communities future research endeavors and also work on the possible drafting of and/or recommendations for your treatment protocols.

The CFS meeting will be in Washington D.C. and is scheduled to begin at 9 am (eastern time).

The proceedings can be viewed here:

http://videocast.nih.gov/summary.asp?live=7908

Go to the link in advance to make sure you have the proper software to be able to view the presentation.

To note:

10 AM- Dr. Peterson of the Whittemore Peterson Institute will be testifying. This is the place where the retrovirus XMRV was recently found in some of the sickest Chronic Fatigue Syndrome patients that were tested.

This is also the place that the 5 future proposed Neuroendocrine Immune (NEI) Centers are supposedly being modeled after... but this original one does not include Lyme disease on its list of autoimmune conditions.

Their goals include...

To facilitate and advance patient care

Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism

Develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases

To advance and support medical education and physician training

```

The first proposed center, according to PANDORA, is planned to be located at the Robert Wood (oh my gosh its IDSA duck central) Johnson facility in New Jersey.

Another, they are hoping, will be located in NY... and so-forth.

After inviting Pallone, yes, THAT Pallone, to a meeting..

This is what is now happening.

Committee information:

http://www.hhs.gov/advcomcfs/

[ 10-30-2009, 11:10 AM: Message edited by: Tincup ]

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Tincup
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Info from Pandora...

PANDORA representatives and patient advocates and colleagues will be attending the meeting. Their leader will be presenting a 5 minute public testimony on Thursday October 29, 2009 at 12:15 pm.

Laurel Bertrand (?) is scheduled to show her video at 9:15 am.

[Big Grin]

PANDORA's website:

http://www.pandoranet.info/bdirectors.html

[ 10-29-2009, 03:26 AM: Message edited by: Tincup ]

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Tincup
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PANDORA's January 2009 meeting with officials: (Did they inform you of this meeting?)

NJ DHSS Forum on Chronic Illness

``Solutions For Vector and Viral Chronic Illnesses Facing NJ and The World''

Date: Wednesday, January 14, 2009

Check out who is on their "meeting" list.

http://lymebook.com/blog/conferences-events/veny-musum-new-jersey-lyme-meeting/#at

Yes, Frank PALLONE- this Pallone..

http://wolf.house.gov/?sectionid=84&parentid=8§iontree=8,84&itemid=1238

Photo from meeting:

http://media.causes.com/548531


`````````````````````````````````````````````````

PANDORA info:

http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional

[ 10-29-2009, 03:23 AM: Message edited by: Tincup ]

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Tincup
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LDA, CALDA, Time for Lyme, SE PA Lyme.... and 35 or 36 groups nationwide.. on this one letter alone... oppose Lyme Disease being included in this Center.

http://www.lymedisease.org/news/lyme_action_alerts/247.html

Some of the other groups and sites in opposition:

http://www.dailystrength.org/c/Lyme_Disease/forum/8251119-important-lymes-patientsact-now

http://tiny.cc/c5gTs

[ 10-29-2009, 03:20 AM: Message edited by: Tincup ]

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Tincup
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xx

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treepatrol
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geez

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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.

Newbie Links

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lightparfait
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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 24, 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,


Sandi Lanford

Sandi Lanford


Founder & President, The Lanford Foundation - Lifelyme, Inc.

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lightparfait
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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.

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massman
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From above:

"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."

Support from these guys is impressive ?
And pigs can fly around the moon ? [loco]

IMO the wording seems currently "politically correct." What will they actually do ?

I may be wrong...

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Tincup
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Actually mass.. it isn't supported by LYME heads of government... and I've yet to find who actually IS in support of the NEI Center at the NIH, CDC.

Someone just said (at the live hearing) that the audience members in support of CFS concept and Center were noticed by the fact they are wearing GREEN shirts.

Getting ready to do public comments now.

[Big Grin]

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Tincup
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Marly Silverman- head of Pandora.. is speaking now.

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Tincup
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The audience IS wearing Lyme green shirts!

I couldn't understand at least 80% of Ms. Silverman's talk as I have trouble with accents and she was speaking quickly.

I did catch her gorrilla in the room comment.. and the kicking of the CDC.

Now Robert Miller is speaking (difficult for him- emotional), partly about Centers of Excellence. He wants CDC and NIH funding of centers and is banging the head of the HHS Secretary.

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Tincup
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Ouch on the CDC- angry stuff going on now.

World is flat comments.

Fight federal health agencies.

[Big Grin]

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Tincup
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Courtney Alexander speaking.

The focus so far.... is on the virus being the cause of CFS due to one study.

It seems so far this group is not accepting the fact that not all people with CFS test positive for the virus.. and that folks with cancer and other things also have it but not CFS.

She is calling for funding for centers and clinical trials and physician training funding, etc.

Wants 100 million dollars.. and said a significant amount should be earmarked for the Institute she is supporting.

"appauling comments" she said were made by CDC guy today.

OUCH on CDC again!

Good job she did.

[Big Grin]

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Tincup
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Director of Institute is now talking by phone.

"other pathogens"... Lyme not mentioned.

Hard to understand due to my problem with accents... and echo's using speaker phone.

CDC they believe is mistaken. For many reasons.

8-12 co-factors (coinfections involved).. parvo and Q-fever may be missed.

EBV involved.

Cytokines mentioned.

Parvo in CFS implicated... even in heart.

Gut, brain needs to be tested.

CDC should exam spinal fluid, etc...

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Tincup
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Doctor from PA speaking.. Goldstein (?) Grobestein (?)

Said CDC is BAD news.. I am paraphrasing.

Bad definition of CFS was originally created. Outrageous!

Need to tidy up literature.

Until a better name.. call patients...

MECFS studies should be funded.

Suggests...

NO tax payers dollars wasted on Reeves definition.

Abandon CDC 5 year plan. Change leadership. New plan.

Make taxpayer funding available.

Many people harmed by a decision.

Increase funding.

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Tincup
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Janice (?) Bell speaking

Gives credentials.

Got CFS. Sick 22 years. Traveled and tried many protocols... some good some bad.

Many neuro-cognative effects.

Math is hard when not that way before. Lost skills in Art, etc.

Herbal studies by her in order to control symptoms.

Asks CDC et al to give attention to nutritional approaches.

Keeps mentioning internet forums.

B-12 and details

ONOO successful

Glutathione- quotes study successful.

IV amino acids successful.

Mitroch disfunction needs study.

Revise CFS definition.

If XMRV isn't the reason... need to look at new reasons.

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Tincup
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Ruth Bell- mother of above patient, speaking. A pshyco-therapist.

Pain seen in mom's testimony to see child hurting. Bless her heart.

Talks about her child, pre-CFS.

Janice had to release custody of her child to ex-hubby because she couldn't care for her.

More bragging on daughter.

Everyone needs a caring mother like her.

Fund more WPI's and research.

Good presentation.

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Tincup
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Carol Gerassy (spelling?) by phone.

OUCH on CDC again!!!

WPI- the Institute in Reno- is "emerald city".

Congress MUST conduct hearings.

Yuppie flu...

CFS is a mental illness according to the CDC behind the scene.

Call us names.. Shameless cowards. Ouch on CDC again.

Attacking CDC big time.

Slow, torturous death.

Fever, night sweats... muscle weakness.

(Wonder if she was tested for Babs?)

Kicking CDC again.

Putting hopes on the virus to make government listen.

"I hope you can live with yourself..."

What CDC had done is a crime against humanity.

Patients abused by CDC.

CDC should be held criminally liable.

Lunch break. 45 minutes.

Back at 2:05 PM.

Committee discussion first... then hear from Dr. David Bell.

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massman
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Thx for ongoing updates.
[Cool]

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Tincup
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If you are trying to butter me up so you can kiss my grits....

It's working.

[lol]

But a dinner and movie would still be nice too.

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Tincup
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They just said 400 hits on the webcast.

Munchausers talk was excellent.

[Big Grin]

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Nice Job TC, thanks!

What kind of accents are giving you problems? Are these foreign or regional?

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lightparfait,

would you add a comment at TOP of your post before you show the long rebuttal letter from pandora, that at bottom is bettyg's BROKEN UP version for neuros, and here's the link:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/8/2105?

thx; their paragraphs are way to LONG for us neuro lyme folks ... we give up in frustration! thx [Smile]

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Tincup
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James said.. "What kind of accents are giving you problems? Are these foreign or regional?"

Actually, the first speaker .. I have no clue where her accent is from. Don't believe I've ever heard of such before.

Talking too quickly also throws me off and is difficult for me to follow due to major cognitive problems. So the combination of the accent and the speed was hard for me to grasp.

The second accent was a bit easier ... maybe oriental? Actually I am so tired I don't remember what it was now.

I do fairly well with Greek, Spanish, Cajun, India and North American accents and dialects usually... except for the upper northeast USA areas.

A thick Massachusetts accent, for example, loses me every time... as do British accents.

I THINK it is because I have to THINK too hard to quickly change their words to MY English and then try to comprehend.

Does that make sense?

Anyhow.. one of the accents was actually so strong (forget which one) and therefore, reflected in the closed captions and the words spoken were spelled that way, so even reading along didn't make sense.

I do love accents, but I have trouble deciphering them.

[Big Grin]

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AliG
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I don't know if this was mentioned already & I missed it but it appears, by the published agenda, that it will resume tomorrow at 9am.

Thanks for all this info TC, I can't believe I missed this entire thing. [shake]

I've heard rumor that one of the key players in this thing is one of Lenny Segal's buddies. I really don't like the smell of this.

I hope they'll prove me wrong and turn out to be genuinely interested in helping us, not just tacking on to the noise we've been making to gain a voice for those syndromes that active Lyme is often misdiagnosed as even post-treatment.

I'm sure glad they're giving the CDC a lashing about their attitude toward the many suffering people in this country! IMO, they can't possibly hear that stuff often enough if they continue to choose ignorance.

--------------------
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.

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AliG
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quote:
Originally posted by lightparfait:
[QB] Introducing the NeuroEndocrineImmune (NEI) Center

...


In Good Health,


Sandi Lanford

Sandi Lanford


Founder & President, The Lanford Foundation - Lifelyme, Inc.

I had the following names listed on the copy of this letter that I received:

"In Good Health,

Marly C. Silverman
Founder
P.A.N.D.O.R.A
http://www.pandoranet.info/

Sandi Lanford
Director-at-Large, P.A.N.D.O.R.A.
Founder & President, The Lanford Foundation
http://www.lifelyme.org/

You can direct additional questions you may have to either
Dr. Kenneth J. Friedman at [email protected]
Or Lifelyme Inc., at [email protected]

PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR
RESEARCH AND ADVOCACY - 501 c 3 - ID # 550795076
C/O VINA + COMPANY, 255 Alhambra Circle, Suite 715, Coral Gables,
Florida 33134
Phone: 305-441-1591 Volunteer Help line: 954-783-6771
http://www.pandoranet.info/
__._,_.___"

I think its Friedman that's been associated with Segal. I don't know what that means to us.

--------------------
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.

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Abxnomore
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Doesn't sound good to me at all.
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Tincup
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Hey AG...

Yes, you are right!

It is on again today... don't know what topics are going to be introduced... but it is interesting to hear the CDC/NIH/IDSA "stuff".

If anyone wants to hear it.. go to the first post in this topic and click on the link.

AG said.. "I've heard rumor that one of the key players in this thing is one of Lenny Segal's buddies."

To put it mildly!!!

[lol]

It is suppose to be located at Robert Wood Johnson... home to the Flying Lyme Patient Duck Bombers.

Home to the "You're not sick, we have proof you're just nuts" theory.

[Eek!]

This is like me going to Ho Ho Hopkins or Hold the Mayo Clinic and giving them the keys to the Lyme Community, with a kiss on the forehead and a pat on the bee-hind....

And saying "Take me baby, I'm yours"!

[lol]

Two quirky things stick out in my mind after yesterday's presentations.

1. They are wearing LIME green shirts.

2. They are asking for $100 million dollars with a big portion to go to the Center.

Does LIME green ring a bell? Isn't that like ME wearing pink to a Lyme hearing?

Strange they have adopted the "Lyme" color when there are many many crayons in the box to choose from.

Does the total $100 million ring a bell? Like in the federal Lyme bill we've been working on?

There are LOTS of numbers in the math books... why grab onto the $100 million figure?

````````````````````````````````````````````````

AG said.. "I think its Friedman that's been associated with Segal. I don't know what that means to us."

I think they should pack their bags and move to Alaska as soon as posible....

Isn't that where the rest of the IDSA will be going soon?

[Big Grin]

--------------------
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Tincup
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I am also concerned that the CFS Community, bless their hearts this is a NASTY position to be in for them....

But why are they still arguing about what name to call their condition? And about the various definitions?

It seems they have spent years arguing amongst themselves. Is it 10 or 12 years now? And NO official changes?

A number of speakers were "stuck" on that topic at various times.. rather than presenting the science in their alloted time... especially science that included more than the one virus study from this one Institute.

And let's be clear...

I don't care what "condition" or disease a person has. My concern is they are hurting and need help.. and if I can do something to help them (within reason and the law)...

I'll be happy to.

But to switch their focus and grab onto the coat tails of Lyme- already a controversial thing- isn't benefitting them or us.

I do wish them well... but taking over... or taking on Lyme at this point .. especially when Lyme doesn't want to play this "go backward" game...

Is not advantageous to anyone.

[Big Grin]

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lightparfait
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Those of us that have chronic lyme or more than just lyme...are ready for more than what the lyme community has offered us so far. There is so much more to uncover.

Tincup is sharing the wrong information about a connection with RWJ and L.S...... Don't know why she is making that up? There is no affiliation with that group.

It's time to move forward.

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canbravelyme
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Neuroendocrine Immune Disorder?

I have an infection.

Period.

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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Abxnomore
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Light,

I'll remind you about Lymenet rules and making accusatory comments about others.

I don't think TC is spreading inaccurate information. She has been actively involved in the Lyme community for too many years and is one smart cookie.

I'm not sure what your agenda is but everyone should read and make form their own opinions.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/8/2086?

http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/2099

http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/2094

http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/2105

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Tincup
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canbrave... HA! Nuff said.

[Big Grin]

Abx.. how sweet. Thank you.

And not to worry. Light is upset about this and is sick and wants MORE to be done for all of us... and has a good heart.

I know it is hard not to attack me in the process because I have a big mouth and for this one topic, we are not in agreement.

Over the years I've become accustom to being trashed, kicked and beaten when people didn't like what I had to say or even when I said nothing at all.

Sometimes just being alive on this planet has been enough reason to drag me into a bash fest.

But thanks for your comments. MUCH appreciated.

[Big Grin]

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canbravelyme
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Hi All,

My concern is:

If Lyme disease is listed as a, "Neuroendocrine Immune Disorder", it will facilitate the classification of chronic Lyme disease as, "Post-Lyme Disease Syndrome", and become more difficult to obtain long-term antibiotic treatment.

--------------------
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Tincup
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Light...

You said.. "Those of us that have chronic lyme or more than just lyme...are ready for more than what the lyme community has offered us so far."

Dear one.. I agree with you. I do. And I know you are frustrated that things seem to be moving slowly.

I am too.

Heck, I've wanted more than the community has had to offer since day one. I believe ALL of us want more.

But we don't need to be making deals with the devil to get it.

And I am NOT.. I repeat NOT.. referring to anyone here or anyone involved with this project as the devil.. it is just an expression.

Actually, there is an exception.. Robert Wood Johnson ducks.

[Eek!]

Anyhow...

If the CFS community wants to have a Center of Excellence for CFS to help them... fine. I support their efforts. I do.

But NOT if they try to stick Lyme in with it.. and not when they drag Lyme into a HUGE duck motel and say here I am, take me..

And not when there are so many other things wrong with this plan in regards to Lyme patients.

If they want a Center... fine. Just take Lyme out of it and we will go away.

If they come up with something new.. IF they even get a Center at this point.... and it will help any of us... fine.

Just send me an email and I will be happy to look it over. And if it helps any of us.. I'll be the first to thank them for sharing.

And the same with OUR research. If it can help them... and I have ALWAYS tried to help fibro and CFS patients (and MS, ALS, Autism, etc) by sharing Lyme and coinfection info with them.....

I will continue to share that info and hope it will help.

But we don't NEED to be joined at the hip to share information.. and the bad here far outweighs the good in this circumstance.

I do hope you understand.

[Big Grin]

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Tincup
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Light...

You said.. "Tincup is sharing the wrong information about a connection with RWJ and L.S...... Don't know why she is making that up? There is no affiliation with that group."

I am trying to figure out what you are saying... not sure?? Hard to respond, but I'll try.

****Correct me where I am wrong here please.***

The proposed Center is to be located at Robert Wood Johnson.

L.S. the seagull... has been connected to RWJ for many years... and still has LONG reaching octopus arms to that Institute.

RWJ has published numerous NASTY articles about Lyme and Lyme patients.

The seagull has been involved in a number of them over the years.

There are still a number of ducks there publishing bad articles that are hurting all of us .... in fact.. some have been newly published, even as recently as this year.

Dr. F- the CFS guy at Robert Wood Johnson (not the female marshall protocol Lyme doc)...

That Dr. F is part of RWJ... and is involved in the Centers plans.

Now what part of that is incorrect?

[Big Grin]

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Tincup
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Oh and by the way...

AliG mentioned L.S. above, not TC.

If you look back.. I just quoted her to be able to write a response.

But I do agree with Ali G.

[Big Grin]

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Tincup
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Canbrave said..

If Lyme disease is listed as a, "Neuroendocrine Immune Disorder", it will facilitate the classification of chronic Lyme disease as, "Post-Lyme Disease Syndrome", and become more difficult to obtain long-term antibiotic treatment."

You are so right on here!

Excellent!

And... can you see the insurance companies licking their lips right now... wishing and hoping they get to deny us even more?

[Big Grin]

The conference is back on after a lunch break.

[Big Grin]

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canbravelyme
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The timing of this is such:

I'm wondering whether this is preparation for a conscious side step of any IDSA guideline revisions in support of extended abx treatment.

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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Tincup
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Can..

Interesting thought.

It WOULD seem to benefit them (IDSA), if this were to happen.

But I honestly believe the folks wanting this Center are NOT going that far as to work directly with the IDSA against our causes.

Heaven help them if they are.

And I think they just don't have the experience and knowledge about Lyme, et al... and know the politics specific to this disease.... to be able to have looked forward and seen the pitfalls.

Now that the pitfalls have been pointed out to them... and our voices have been heard...

I hope they do the right thing now and remove Lyme from the Center's plan and salvage their attempt to get their Center somewhere, period.

Getting it at all is doubtful now... so they should cut their losses and listen to the majority in the Lyme community...

And move forward in the direction they need to move.. leaving us out of it.

[Big Grin]

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Tincup
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They are still arguing about the definition of CFS!

Oops... they just told the panel member "don't exagerate!"

Oh my goodness. The speaker is wearing a Lyme green bracelet!

Multiple definitions now...

Faputo (sp?) and another.. the canadian Consensus definition.

They are asking that the CDC accept that the CDC definition is inadequate and fundamentally inaccurate and to dump it.

1,000 signatures on poll... saying problems with definitions... mentioned by committee members.

How will they vote?

I'm waiting.... I'm sitting on the edge of my seat...

UGGGG.. now confusion which recommendation, 2002, 04, 05, etc...

Now they are adding "some" justification to the definition.

YIPPEE!!!!!

They voted to suggest to the CDC to change it!!!

Now will the CDC listen?

[Big Grin]

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canbravelyme
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Yeesh; there's two posts: one in Activism, and one here.

Does the Lyme green bracelet mean Lyme, or CFS?

TC: How quickly did they get this hearing together? Did this begin with the discovery of the virus XMRV?

I don't know what to think of: http://www.cdc.gov/cfs/cfs_strategic_plan.html

"CFS Among Adolescents in Foster Care

The Georgia Department of Human Services has requested CDC, in collaboration with Emory University, to determine the relevance of unwellness among adolescent wards of the Georgia foster care program as these children manifest an excess of CFS risk factors. Planning will begin in late 2009, field work on the initial survey will begin in 2010, initial analyses will be complete by late 2010, and intervention studies will occur through 2013.

* Identify risk and resilience factors for CFS"

Best wishes,

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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Tincup
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Hey Canbrave...

I thought I answered this post you wrote above already?

I did get distracted by deer hunters and supper ... but thought I had answered you?

Maybe I did on one of the other posts?

This is getting too confusing. UGGGG!!!!

But...

I think we will be ok.

Time to rest and put this baby to bed.

Have a good weekend!

I know I will.

It's TALLADEGA time! Gentlemen, START YOUR ENGINES!

Vvvvrrrrrrrrrrrrrroooooooooommmmmm!

[Big Grin]

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canbravelyme
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I appreciate the dedication and energy you devote to activism, T.C.

Wishing you a great [relaxing] weekend!

[kiss]

--------------------
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Robin123
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It's interesting to read that they're wearing lyme green -

When I was involved with the green movement when it started here in this country, a fake green group started and they coopted the name and the color green, to confuse the public.

This is not the first time the color green as a movement color has been copied.

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lightparfait
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No...it is not to be located at RWJ and never has been. You keep saying this and don't understand why? Is this rumor...as this is surely not fact.
Segal is not involved either.

Please only state facts...not rumors.

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njlymemom
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a facility very much connected with RWJ

if you have the fact, please post it

i am wondering why you haven't

take care - c

--------------------
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

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Tincup
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This reminds me of a loaf of bread.

When the bread is getting low... someone MAY have to eat the last piece of bread .... the dreaded "heel".

So, is the heel actually a part of the loaf of bread.. or a separate entity?

You say po-TA-toe... I say po-TOT-toe.. you say to-MA-toe, I say to-MAT-toe

[Big Grin]

Rather than explaining all this stuff below in each post.. I admit I am guilty.... and I do tend to cut it back to 3 initials (RWJ). My fault for not being more specific.

Bread or heel?

But then again, in my own defense, who wants to see this yada yada in all these posts?

The University of Medicine and Dentistry of New Jersey (UMDNJ) is the state-run health sciences institution of New Jersey and comprises eight distinct academic units:

the New Jersey Medical School, the New Jersey Dental School, the Graduate School of Biomedical Sciences, the School of Health Related Professions, and the School of Nursing in Newark;

the School of Public Health and the Robert Wood Johnson Medical School in New Brunswick; and the School of Osteopathic Medicine in Stratford.

University of Medicine and Dentistry of New Jersey, University of Medicine and Dentistry of New Jersey, Robert Wood Johnson University Hospital, Robert Wood Johnson Medical School, Low Vision Center At Robert Wood Johnson, etc.

In cooperation with Robert Wood Johnson University Hospital, the medical school's principal affiliate, they comprise New Jersey's premier academic medical center.

In addition, Robert Wood Johnson Medical School has 34 other hospital affiliates and ambulatory care sites throughout the region.

As one of the eight schools of the University of Medicine and Dentistry of New Jersey (UMDNJ) with 2,800 full-time and volunteer faculty, Robert Wood Johnson Medical School encompasses 22 basic science and clinical departments, hosts centers and institutes including The Cancer Institute of New Jersey, the Child Health Institute of New Jersey, the Center for Advanced Biotechnology and Medicine, the Environmental and Occupational Health Sciences Institute, and the Stem Cell Institute of New Jersey.

http://tiny.cc/GHcj4

[Big Grin]

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Tincup
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Kind of like when I refer to "Hopkins"... I sometimes even call them Ho Ho Hopkins.

[lol]

I do not say... The Johns Hopkins University or The Johns Hopkins Hospital and Health System. Nor do I say...

The university has nine academic divisions and campuses throughout the Baltimore-Washington area. The Krieger School of Arts and Sciences, the Whiting School of Engineering, the School of Education and the Carey Business School are based at the Homewood campus in northern Baltimore. The schools of Medicine, Public Health, and Nursing share a campus in east Baltimore with The Johns Hopkins Hospital. The Peabody Institute, a leading professional school of music, is located on Mount Vernon Place in downtown Baltimore. The Paul H. Nitze School of Advanced International Studies is located in Washington's Dupont Circle area.

School of Advanced International Studies (SAIS)
Krieger School of Arts & Sciences (KSAS)
Carey Business School
School of Education
Whiting School of Engineering
School of Medicine
School of Nursing
Peabody Institute
Bloomberg School of Public Health

Johns Hopkins also has a campus near Rockville in Montgomery County, Md., and has academic facilities in Nanjing, China, and in Bologna, Italy. It maintains a network of continuing education facilities throughout the Baltimore-Washington region, including centers in downtown Baltimore, in downtown Washington and in Columbia.

`````````````````````````````````````````````````
Now, if the proposed Center isn't or shall I say wasn't planned to be at that specific NJ facility ....

It really doesn't take away from the bottom line... which is...

We don't want Lyme disease lumped together with a host of conditions with no known cause... especially Chronic Fatigue and Fibromyalgia.

First of all, that is medically and scientifically incorrect.

Second, we've been buried under those names already and we need to stand up and say NO MORE!

Lyme disease is caused by an infection... and most of our symptoms after standard treatment (IDSA) are caused by active infections, NOT some made up post-Lyme syndrome that deserves and gets NO antibiotic treatment.

[Big Grin]

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www.MarylandLyme.org
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Tincup
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Another quick point...

WHY doesn't PANDORA or those involved TELL anyone the details?

They've had a LONG time to do so ... but instead it has been kept hidden from all of us. And...

WHY do patients across the country have to research this to try to find out what someone they don't even know... and who doesn't know them or anything about their disease.. is planning for their future... without their knowledge?

When they HAVE responded... it is to kick others who want to know what the heck is going on.

Show me the beef!

Or shall I say..

They SHOULD have showed us the beef... but it is too late now.

[Big Grin]

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njlymemom
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amen!


(but I happen to like the heel of the bread)

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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  |  IP: Logged | Report this post to a Moderator
Tincup
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HA!

BUT.. did you know?

If you eat the crust of the bread it makes your hair curly?

I can't believe parents are allowed to tell their kids that stuff and get away with it!

Having very curly hair... you know, I STILL don't eat the bread crust!

[lol]

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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canbravelyme
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My understanding was that it grows hair on your teeth!

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For medical advice related to Lyme disease, please see an ILADS physician.

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Rumigirl
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TC,

As always, thank you, thank you, thank you for your detailed updates. Sigh. This war has no end it seems. And, it is only

heating up more and more. It's exhausting and demoralizing. But, we have to trudge on anyway, and fight the good fight.

What the blazes should we do now to protest this travesty??

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Tincup
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Ahhhhhh.. protest! That's the word of the day!

[Big Grin]

Thanks Rumi for the kind words. What should we do, you ask?

I KNOW it is slow go.. but we need to continue to chip chip chip away at the IDSA.

If we continue to pull the rug out from under them, inch by inch, by proving they are wrong, corrupt, idiots, whatever...

It will advance our ability to get ourselves and our families REAL medical care.

I believe this specific problem is under control now.. (till additional attempts are made by this group IF they are made) ...

But it takes EVERYONE contributing a phone call, fax or letter when a Call to Action appears.

Without patient input.. and patient response... we will sit in a mud hole and stay there.

I do think ALL of us want what is best for everyone who has been hurt by Lyme and TBD's... we just need to NOT do things underhanded or shall I say underground.

And if someone has what they feel is a good idea.. it should be shared BEFOREHAND with the patients.

That will prevent these side distractions from occurring.. the distractions that keep us tied up and busy when we have other things that need to be done.

Thanks for your support.. always!

And hey there with the hairy teeth/bread crust theory... YULK on that!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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