posted
received an email from LDA and could not get a link to work - so copied it the best I could:
October 11, 2009 Vol 2, Issue 9
Action Alert
from
Lyme Disease Association, Time for Lyme, CALDA, & Lyme Disease Association of Southeastern Pennsylvania
In This Issue History Take Action Now Goals
HISTORY The State of New Jersey is placing Lyme disease in a group with disorders of unknown causes: chronic fatigue, fibromyalgia, Gulf War Illness, multiple chemical sensitivity. It wants to open a center characterizing these disorders and include Lyme disease as "neuroendocrine immune" (NEID) disorders.
This is a serious danger to Lyme patient treatment as it mirrors what the IDSA and some governement agencies want to do, make chronic Lyme disease a collection of vague symptoms with no known cause, thus preventing treatment with antibiotics.
The New Jersey Assembly already passed a unanimous resolution (AR 202) supporting the creation of this center. The NJ Senate has not yet voted on the Resolution (SR 133).
Click here to see the Senate Resolution that will be voted upon NJ Senate Resolution SR 133
Click here to see the Letter sent last week to NJ Senators asking for removal of Lyme from resolution Letter to NJ Senate by Lyme Groups TAKE ACTION NOW
WHO: NJ residents or businesses; also, any Lyme organizations nationwide who have not already signed above letter. No others please at this time, thanks! WHAT: Call or fax the NJ State Senate sponsors Christopher "Kip" Bateman and Loretta Weinberg.
WHY: To remove Lyme disease from this resolution & from the center
HOW: Call or fax the two senators. Tell each of them Including Lyme disease with disorders with no known cause will hurt Lyme patients everywhere and prevent them from receiving treatment. Please remove all references to Lyme disease from the Resolution. Leave your name, address, contact info (if group, leave group name). Also, check if either Bateman or Weinberg is your senator Find your NJ State Senator If so, tell him or her you are a constituent.
GOAL To have Lyme disease removed from a Resoultion SR 133 which includes other disorders all of which have unknown causes.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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bettyg
Unregistered
posted
cb,
i received it too and was going to post, so glad to see yours here.
may i suggest you add ONLY after NJ so those of us from other states won't think we're being asked to do something.
just click on pencil, 3rd box to right of your name, and a HUGE THANKS! hug
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Yes heard about this..... This is insane.
Everyone from NJ needs to help with the issue.
-------------------- Diagnosed CDC + 6/2007
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Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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NO WHERE in the Resolution is it stated that Lyme is an autoimmune disease, because it is not. However it can be said that Lyme disease falls under the label as being a Neuro endocrine immune disease. LLMDs treat Lyme patients for neuro endocrine and immune issues, and they often send Lyme patients to Neurologist, Endocrinologist and immunologist. Therefore, it is a natural that Lyme would be under the umbrella of Neuroendocrine Immune disorders. We also now know that Lyme is not the only illness under the NEI umbrella that we know what causes the illness. Chronic fatigue syndrome it was reported this last week is caused by a XMRV a retrovirus, an infectious agent. Go to Garth Nicolson's website: www.immed.org and you will learn about causes connected to the Gulf War Syndrome. Environmental Illness causes are in the title. The NEI Center is modeled after the Whittemore Petterson Institute which discovered the XMRV retrovirus causing Chronic Fatigue. The discovery was a collaborate effort with several outside labs, including Cleveland Clinic. The statement the center wants to make chronic Lyme disease a collection of vague symptoms with no known cause, thus preventing treatment with antibiotic is with all due respect, not true! There is obviously some misunderstanding of the subject matter in the 'Resolution' and the mission of the NEI center. If anything the purpose of the development of the NEI Center is in the interest of the patient, to promote research in an effort to find better testing, diagnosing, treatment, and to provide patient care in all aspects of the patients needs which are presently unavailable. Please get the facts and go to website: www.lifelyme.org and read the NEI Mission Statement. Dr. David Bell, MD has written in several of his books that when his CFS patients were tested for Lyme disease 35% of them tested positive for Lyme disease. Lyme specialist Dr Sam Donta is quoted as saying that Lyme disease is a important causative agent in Fibromyalgia and as with CFS, he suggest antibiotics for fibromyalgia of "unknown cause." The center is based on the philosphy that the similarities in symptoms of NEI disorders are the human body's response to similarities in the UNDERLINING PATHOPHYSIOLOGIES that causes these disorders. Accordingly, and the cornerstone of the NEI Center of America's mission is that discoveries and advances made in any one of the NEI disorders will be applicable and beneficial to other NEIDs. We have a health care crisis in this country and we need to work together, not be divided and pull in different directions. At the NEI Center there will be encouragment for outside medical researchers and physicians to share their knowledge, passion and vision and put self-interest aside for the benefit of the 'cause'. The 'cause' being finding solutions for all the chronically ill.
Posts: 991 | From USA | Registered: Aug 2001
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6 WHEREAS, Neuroendocrine immune disorders (NEIDs) currently 7 include Chronic Fatigue Syndrome/Myalgic Encephalopathy, 8 Fibromyalgia, Gulf War illness, Lyme disease, Multiple Chemical 9 Sensitivity Syndrome, and other environmental illnesses; and
it states that Lyme is an immune disorder - not true
lines 31 - 42 are also of concern:
31 WHEREAS, Having a research center in this State is essential to: 32 promoting research into the etiology of, and therapeutic 33 interventions for, NEIDs; establishing treatment protocols and 34 providing patient care for all individuals in the State of New Jersey 35 afflicted with NEIDs; serving as a repository for NEIDs research 36 data, patient data and research publications; serving as a resource 37 for NEIDs researchers by sponsoring scientific meetings and 38 encouraging discourse among researchers; serving as a tertiary 39 resource for both physicians and patients in their efforts to manage 40 NEIDs; and advancing both NEIDs research and patient care by 41 disseminating the most recent advances in NEIDs research, 42 diagnostics and treatment protocols; now, therefore,
from line 32"promoting research into the etiology of..." we know what causes Lyme...
line 33 - "establishing treatment protocols"
no thank you!
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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bettyg
Unregistered
posted
sandi, breaking this up for severe neuros like me/NJ folks who can't read as is ...
NO WHERE in the Resolution is it stated that Lyme is an autoimmune disease, because it is not. However it can be said that Lyme disease falls under the label as being a Neuro endocrine immune disease.
LLMDs treat Lyme patients for neuro endocrine and immune issues, and they often send Lyme patients to Neurologist, Endocrinologist and immunologist.
Therefore, it is a natural that Lyme would be under the umbrella of Neuroendocrine Immune disorders.
We also now know that Lyme is not the only illness under the NEI umbrella that we know what causes the illness.
Chronic fatigue syndrome it was reported this last week is caused by a XMRV a retrovirus, an infectious agent.
and you will learn about causes connected to the Gulf War Syndrome. Environmental Illness causes are in the title.
The NEI Center is modeled after the Whittemore Petterson Institute which discovered the XMRV retrovirus causing Chronic Fatigue.
The discovery was a collaborate effort with several outside labs, including Cleveland Clinic.
The statement the center wants to make chronic Lyme disease a collection of vague symptoms with no known cause, thus preventing treatment with antibiotic is with all due respect, not true!
There is obviously some misunderstanding of the subject matter in the 'Resolution' and the mission of the NEI center.
If anything the purpose of the development of the NEI Center is in the interest of the patient, to promote research in an effort to find better testing, diagnosing, treatment, and to provide patient care in all aspects of the patients needs which are presently unavailable.
Dr. David Bell, MD has written in several of his books that when his CFS patients were tested for Lyme disease 35% of them tested positive for Lyme disease.
Lyme specialist Dr Sam Donta is quoted as saying that Lyme disease is a important causative agent in Fibromyalgia and as with CFS, he suggest antibiotics for fibromyalgia of "unknown cause."
The center is based on the philosphy that the similarities in symptoms of NEI disorders are the human body's response to similarities in the UNDERLINING PATHOPHYSIOLOGIES that causes these disorders.
Accordingly, and the cornerstone of the NEI Center of America's mission is that discoveries and advances made in any one of the NEI disorders will be applicable and beneficial to other NEIDs.
We have a health care crisis in this country and we need to work together, not be divided and pull in different directions.
At the NEI Center there will be encouragment for outside medical researchers and physicians to share their knowledge, passion and vision and put self-interest aside for the benefit of the 'cause'.
The 'cause' being finding solutions for all the chronically ill.
ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
I think that there may be huge misconceptions about the neuroendocrine clinic. As I have understood, this is also being piloted by certain LLMDs and this clinic is for the hard core patients that don't seem to get well.
As for Lyme not being an immune disrupter, I may have to respectfully disagree with that. My immune system has certainly been dysregulated.
I have mcs and lyme, plus I have been on IVIG.
I think it would be amazing to have a place with doctors under one umbrella to help patients with extensive health issues.....and who understood lyme! How rare is that? We certainly can't go to the Mayo with any physician understanding the complexity of our symptoms.
This is not saying that Lyme is not infectious, but it does cause autoimmunity in cases. I again am one of the patients who was pushed into autoimmune. This has been concurred by several lyme specials (ILADS) as well as mainstream doctors. Some of us have been sick a long, long time, and lyme is not the only player at work.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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posted
hi artist, i am a long time sufferer too - i understand what you are saying
the problem i see is that this resolution puts Lyme in the same category as illnesses of unknown origin - this to me is not right - the wording does not protect us
yes, my immune system is greatly compromised - but the infection needs to be addressed first
most importantly - i don't want a group of unknowns (who are these researchers??) setting up a tx protocal or standard of care for me - i have enough problems with insurance here already
who chooses the researchers? how do we know that they will not also have a conflict of interest? How do we know tht they aren't being "bought" (NJ politics at its best)? Insurance is big business in NJ!
what we need in NJ is what our lucky neighbors in CT have achieved just recently -laws to protect our txing drs., acknowledgement of chronic lyme and open ended tx with antibiotics -including IV
insurance co's rule here, politics is dirty, and this resolution is too vague leaving too much room for things to go wrong
as someone with Lyme and Company for over 30 yrs, txing for 7, having 3 children with this disease, losing pets to this disease, yes we need research desperately
but i am not going to settle for this and risk losing the txment i have for myself and my children -
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Concerning Autoimmune....The Resolution reads and I quote the COMPLETE paragraph here exactly as written, " Chronic Fatigue Syndrome/Myalgia Encephalopathy, Fibromyalgia, Gulf War Illness, Lyme disease and Multiple Chemical Sensitivity have been characterized as being AS DISABLING AS CHRONIC OBSTRUCTIVE PULMONARY DISEASE, STAGE RENAL FAILURE, AND RHEUMATOID ARTHRITIS; AND AS LIFE IMPAIRING AS MULTIPLE SCLEROSIS, AIDS AND CANCER CHEMOTHERAPY TREATMENTS...and Whereas. The mechanisms of transmission of NEIDs include parasite-borne infections etc.....
Please don't delete parts of my post.... SandiB
Posts: 991 | From USA | Registered: Aug 2001
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posted
Concerning the reference by njlymemom that Lyme is has been put in a category of illnesses of unknown causes. This is not true. Just last week the XMRV retrovirus was discovered to be the cause of Chronic Fatigue and this was discovered by the Whittemore Petterson Institute, which the NEI Center is being modeled after. Please post my post as written and again don't delete the truth. Why would you do that? SandiB
Posts: 991 | From USA | Registered: Aug 2001
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I was misdx with MS for about 10 yrs - and came very close to losing my life to Lyme before i was correctly dx -
my spect scan shows severe encephalitis - i have many neurological problems
i am in no way saying that Lyme is anything but a serious infection - the key here is the word infection
yes it does say tht the mechanism of transmission include parasite borne infections
but the wording is too vague - even the IDSA acknowledges that Lyme is a bacterial tick borne disease, but they recommend a short course of tx
why would anyone with Lyme want to risk having an unknown researcher dictate what their care will be
haven't the IDSA called patients who still have symptoms after their short course of tx as having a "syndrome" -
again - yes i certainly agree that research is needed - but a resolution this vague can certainly harm more than it could help -
may i ask in what state you live in? if it is not NJ, why don't you put this resolution to the test where you live
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
posted
I apologize if I offended you...yes, I am wrong on the deletion....it is possible as I am trying to multi-tasking here. My family and I all have Lyme and other NEIDs.
I am a NJ gal...born and raised in NJ, and have family, a close relative who is working with me who still lives there. There is no other reason we are in NJ than that we had the connections, support for the facility and the fact that NJ is number 3 in Lyme cases. Why do you ask?
We have put together an amazing team on this project, who are presently active in several states. The majority of the members of our team have Lyme disease, and at least one or more of the disorders listed under the NEI umbrella.
Please know we are well aware of the need for long term antibiotic treatment for Lyme disease and that is one of the main reasons for the establishment of this center. The center is to serve as a site for information exchange - research data, protocols, and scientific publications. In interest of the patients we wish to provide educational and support programs to patients and caregivers using social networks, available technology implemented thru local and nationwide outreach programs. There is much more and I hope you will check out the mission statement at the website listed in my post above.
The latest research is showing that what is called Lyme disease is actually much more complex than infections caused by ticks. A more proper name is Borreliosis Complexes. I can't name the ILADS physician who agree, but everyone of them that I have spoken do agrees. Just ask them.
The NEI Center is designed and modeled after the Whittermore Petterson Institute in Reno, Nevada which just recently discovered the XMRV retrovirus that causes Chronic Fatigue. So you see Lyme Disease isn't the only illness under the NEI umbrella whose cause is known.
A Lyme specialist DR.( won't list name )is quoted as saying that Lyme disease is a important caustive agent in fibromyalgia as with CFS, he suggest antibiotics for treatment for both.
I see you were diagnosed with MS and severe encephalitis. I assume you also have been diagnosed with Lyme disease and possibly co-infections or maybe even a virus or two? It is obvious to LLMDs and researchers that we can no longer keep Lyme separated from the other disorders. Research is showing the connections and in order for us to find a effective treatment and cure of Lyme disease we need to move out of the box we have been put in. The name 'Lyme' has closed many doors for us, why keep doing the same thing and expect a different result?
The NEI Center is the first institute of its kind in the Northeast. It is based on the philosophy that the similarities and paradoxes in NEI disorders are the human body's response to the similarities in the underlying pathophysiologies that causes these disorders. Discoveries and advances made in any one of the NEI disorders will be applicable and beneficial to other Neuroendocrine Immune disorders.
Case in point - the discovery of the XMRV Retrovirus for Chronic Fatigue made in the WPI a Neuro Immune Center in Nevada. Shouldn't those of us who have Lyme disease and suffer from fatigue now get tested for the XMRV Retrovirus? Perhaps this retrovirus is part of the puzzle - why some Lyme patients who are treated with antibiotics still are plagued with Fatigue issues? There are many questions and the only way we have a chance to answer them is to bring the researchers and physicians together in a NEI Center.
Please think about these facts. SandiB
Posts: 991 | From USA | Registered: Aug 2001
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posted
After reading the above posts I read the Resolution paragraph in question.
I think we need to take a step back, take a deep breath and READ THE RESOLUTION. It clearly states Lyme is "AS DISABLING" as the other diseases.
It does not say it is an auto-immune disease.
I personally would appreciate having help from any clinic willing to learn about Lyme. Dr. J had HIV and Lyme together in his clinic.
I hear your angst NJMom, but please consider that when you were first diagnoses with MS, Lyme was not anywhere NEAR where it is today for recognition and treatment. I am sorry for the pain you have suffered, it sounds like a long, rough road.
I would personally like to go to a clinic that has all under the same umbrella. Some lyme will still go to "Auto Immune" due to bad testing but people will have an awareness that the two are LINKED.
Posts: 982 | From Florida | Registered: Feb 2002
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posted
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
Posts: 991 | From USA | Registered: Aug 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Di said... "I think it would be amazing to have a place with doctors under one umbrella to help patients with extensive health issues..... and who understood lyme! How rare is that? We certainly can't go to the Mayo with any physician understanding the complexity of our symptoms."
I agree. It would be wonderful, IF they understood Lyme and tick borne diseases. BUT..
Please know the facts about this proposed Center. For example...
We wouldn't run to the Hold the Mayo Clinic... or to Ho Ho Hopkins.. or to Yale to try to find people who understand Lyme that would be willing to PROPERLY help us.
We also wouldn't run to the place where this Center will be either... the NJ Medical School- home of the infamous Robert Wood Johnson "let's patent stuff and make a vaccine" and there is "no such thing as chronic Lyme" nightmare.
You know, the one where old Lenny Sigal hung out... the duck who can't do enough destruction while at the RWJ facility to satisfy himself...
But must also spend his spare time kicking the bee-jeebies out of Lyme patients and their doctors, both in court (to the tune of $500.00 per hour) and in many published articles.
The same Robert Wood Johnson Center that wrote up the data and said in several recent journal articles that you all are just nuts and not sick with Lyme. The insurance companies best friend.
The same RWJ ducks that we've been fighting for years on end.
For more info on Sigal... see Under Our Skin's post. It gives a short overview of some of the problems.
I believe you can see for yourselves that this Center would be in a place we wouldn't normally go for sincere research conclusions or help.
Why then should we assume that by putting Lyme in a basket with diseases of unknown origin (and having no specific treatment) would be of benefit to us?
PS. Di, I am only using your comment to open the door for more facts. Anything negative in the post is NOT directed to your comment or you.. only to the RWJ Center and dear old Lenny.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"A SENATE RESOLUTION urging the Governor and memorializing Congress to encourage the establishment of a research center in New Jersey dedicated to chronic neuroendocrine immune disorders."
NOTE where it states "immune disorders" in the resolution. It goes on to say...
"WHEREAS, Neuroendocrine immune disorders (NEIDs) currently include Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf War illness, Lyme disease, Multiple Chemical Sensitivity Syndrome, and other environmental illnesses;"
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OK. Having worked on this topic quite a bit .. and NOT knowing any Lyme Support Groups were involved ... I guess they forgot to mention it to patients...
And knowing attorneys, support group leaders, doctors, patients and organizations assisted with the LDA Letter sent to Legislators in NJ....
And something like 36 groups across the country reviewed it and signed on in support of it...
It looks to me and many others like they are calling Lyme disease an "immune disorder" and that is not a good idea to lump us with that group.
EVERYONE I know wants to see CFS, fibro and others get a good Center that will help them.
They just don't want Lyme disease and the progress we've made to be set back 20 years by sticking our chronic illness (much of what does come from persistence and NOT autoimmunity- although admittedly we do share similar symptoms)..
In with diseases of unknown origin and an unknown cause.
MY personal opinion... after much thought.. is that we are making progress getting things "right" in the Lyme community.. and against great odds.. and after being held down by the IDSA for countless years.
And we may be getting a lot of funding soon... which the other diseases may not be getting.
And if we get funding, WE need to use the funding for accurate tests, cures, etc... and not widdle it away on duck vaccines and for research at BAD medical places that have an agenda we are dying for ... and especially on new research that may or may not link CFS with Lyme.
IF and when a link is made at the Immune Center with CFS or fibro and Lyme... hopefully those researchers can share the info and we can use it (as they have used ours) to help people.
posted
am i reading this correctly? this center would be at RWJ???
exactly how is this going to be funded?
thank you TC for the additional info
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
It saddens me that LDA did not contact the primary researcher and groups on this project before they made a public statement. Due diligence always pays off.
I wrote the resolution and it was to gain state support to make it easier to raise funds privately. When you raise funds privately it eliminates the strings attached by the govt., which inhibits where research can go.
The institute will be a safe haven to get Lyme work published, do research, house the research and publications, and offer treatment. From a Lyme perspective all Lyme doctors and researchers would have access to this institute and could participate...including LDA supported researchers and doctors, as well as ILAD doctors.
Each disease or disorder will be doing their own research. This will not take away from each others causes. Lyme will not go back 20 years because the researchers that have done the work thus far will be an integral part of the future research at the institute.
I am no longer associated with this project, but the people involved are doing this right and should be supported.
sandi, if you reply more, please have shorter paragraphs for us severe neuro lyme folks like me/others so we can comprehend and read this and get the full affects of what is being said.
i may not be from NJ, but i do care what is happening to you folks and how it may affect other states.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there Lisa...
I appreciate your opinions and thank you for sharing them.
You said.. "It saddens me that LDA did not contact the primary researcher and groups on this project before they made a public statement. Due diligence always pays off."
Actually, from what I understand the head researcher was checked out and contacted when the Resolution appeared out of no where and threatened progress being made in the Lyme community.
And, as far as I know, no one knew a Lyme patient or Lyme related group was doing any of this stuff behind the scenes so they could be contacted about it.
Not until weeks after the situation was being researched and the letter addressing it was being composed and written by the LDA, etc.. and not until the completed Action Alert was sent out to the public did anyone in the Lyme community admit openly to the patient community to having anything to do with the situation or that plans were in progress.
I wish I would have known about it MUCH sooner... and others do too... but since this is just now surfacing... may I ask a question or two?
1. You said.. "I wrote the resolution and it was to gain state support to make it easier to raise funds privately."
But how does contacting NJ state legislators and involving them in this process make it easier to get donations from the private sector?
Admittedly I am not a fund raiser... so any feed back would be appreciated here.
Nice writing, by the way.
2. You said.. "all Lyme doctors and researchers would have access to this institute and could participate."
I'm sorry, but in my wildest dreams I can not imagine RWJ or their dreaded ducks opening the doors to any others than their own like-minded ducks.
I can't imagine them wanting, for example, to share in profits from their patents with LLMD's or decent researchers (IF our side even wanted the money, which they don't).
I also can't see their ducks making way in their vaccine research facility or their lucrative market for our doctors and scientists.
Would they allow Igenex tests to be used, for example?
Would they step aside and finally discard the IDSA guidelines.. or just lump us all in the psych and immune syndrome category... refusing us antibiotics.... as they have been doing for years?
They haven't made one itty bitty step in our direction so far, so I am not sure how this would be accomplished or if this would even be possible.
I also don't see any provisions anywhere saying they (the ducks in charge of RWJ) would agree to that stipulation.
I believe one RWJ duck even mentioning it to the others there would cause a mutiny.
Then again...
Maybe they have had some sort of fairy dust sprinkled on their heads or stuffed in their shirt pockets to make them do a sudden about-face and come on over to OUR side of this debate?
Or are we counting on divine intervention here to save our sorry butts?
3. You said.. "Each disease or disorder will be doing their own research. This will not take away from each others causes."
First of all, if that is the case... why put Lyme in with the other disorders at all .... especially in a duck setting?
And... IF that is the case... and this is a PRIVATE donation thing only.. and not government sponsored...
Why are PANDORA and LifeLyme (who appeared to have joined forces?) promoting NIH funded research studies .. something we certainly DON'T need more of in the Lyme arena after the problems they have caused?
And why spend money on another research center, especially in the middle of duck central, for Lyme stuff when we have several already.... and have decent researchers working on this in independent areas now? (Columbia/MDLyme/CT for example)
Wouldn't working in a duck institute and having them breathing down our necks turn off credible scientists.. not to mention patients who know they have an active infection to address?
And don't decent scientists already (usually) have a place to work from .. and actually need solid funding rather than new buildings to work in... especially considering it is a duck facility they would be in?
I can't even imagine the pressure our docs would be under having to try to deal with a duck duck here and a duck duck there.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
hey hey NJ...
You said.. "am i reading this correctly? this center would be at RWJ???"
From what I understand, that is the plan. Maybe someone knows differently and will share that information with all of the patients ... since they are the ones being affected.
You said.. "exactly how is this going to be funded?"
I have no clue. You might ask LifeLyme or Pandora.
I do hope it won't involve any possible funding that the federal bill MAY bring in ... and I hope RWJ isn't counting on getting their hands on federal funding that we MAY get... and then stuff it all into more psych studies and autoimmune research for addressing people suffering from persistent and/or chronic Lyme.
You said.. "thank you TC for the additional info"
My pleasure NJ. I still have lots of questions though.
I just wish more people knew of the plans before hand... then perhaps there wouldn't be a problem now.
As it is, I am still only getting bits and pieces from folks emailing me and by doing the research on it.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
For those not familiar with Robert Wood Johnson... here are a few samples of their work.
They, more often than not, publish articles strongly supporting the notion that "it's all in your head" and "there is no such thing as chronic Lyme disease".
These samples also show that they want to lump chronic Lyme in the autoimmune category.
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Environ Health Perspect. 2002 Aug;110 Suppl 4: 607-11.
Contributions of societal and geographical environments to "chronic Lyme disease": the psychopathogenesis and aporology of a new "medically unexplained symptoms" syndrome.
Sigal LH, Hassett AL.
Division of Rheumatology and Connective Tissue Research, Department of Medicine, Lyme Disease Center, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick, New Jersey 08903-0019, USA. [email protected]
Lyme disease is a relatively well-described infectious disease with multisystem manifestations.
Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, "chronic Lyme disease," has become established.
Chronic Lyme disease is the most recent in a continuing series of "medically unexplained symptoms" syndromes.
These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings.
We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia.
Psychiatric comorbidity and other psychological factors in patients with "chronic Lyme disease".
Hassett AL, Radvanski DC, Buyske S, Savage SV, Sigal LH. Division of Rheumatology and Connective Tissue Research, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick, NJ 08903-0019, USA. [email protected]
BACKGROUND: There is no evidence of current or previous Borrelia burgdorferi infection in most patients evaluated at university-based Lyme disease referral centers.
Instead, psychological factors likely exacerbate the persistent diffuse symptoms or "Chronic Multisymptom Illness" (CMI) incorrectly ascribed to an ongoing chronic infection with B. burgdorferi.
The objective of this study was to assess the medical and psychiatric status of such patients and compare these findings to those from patients without CMI.
METHODS: There were 240 consecutive patients who underwent medical evaluation and were screened for clinical disorders (eg, depression and anxiety) with diagnoses confirmed by structured clinical interviews at an academic Lyme disease referral center in New Jersey.
Personality disorders, catastrophizing, and negative and positive affect also were evaluated, and all factors were compared between groups and with functional outcomes.
RESULTS: Of our sample, 60.4% had symptoms that could not be explained by current Lyme disease or another medical condition other than CMI.
After adjusting for age and sex, clinical disorders were more common in CMI than in the comparison group .. , but personality disorders were not significantly more common.
CMI patients had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain .. than did the comparison group.
Except for personality disorders, all psychological factors were related to worse functioning.
Our explanatory model based on these factors was confirmed.
*** CONCLUSIONS: Psychiatric comorbidity and other psychological factors are prominent in the presentation and outcome of some patients who inaccurately ascribe longstanding symptoms to "chronic Lyme disease."
Role of psychiatric comorbidity in chronic Lyme disease.
Hassett AL, Radvanski DC, Buyske S, Savage SV, Gara M, Escobar JI, Sigal LH.
University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick, NJ 08903-0019, USA. [email protected]
OBJECTIVE: To evaluate the prevalence and role of psychiatric comorbidity and other psychological factors in patients with chronic Lyme disease (CLD).
METHODS: We assessed 159 patients drawn from a cohort of 240 patients evaluated at an academic Lyme disease referral center.
Patients were screened for common axis I psychiatric disorders (e.g., depressive and anxiety disorders); structured clinical interviews confirmed diagnoses.
Axis II personality disorders, functional status, and traits like negative and positive affect and pain catastrophizing were also evaluated.
A physician blind to psychiatric assessment results performed a medical evaluation.
Two groups of CLD patients (those with post-Lyme disease syndrome and those with medically unexplained symptoms attributed to Lyme disease but without Borrelia burgdorferi infection) were compared with 2 groups of patients without CLD (patients recovered from Lyme disease and those with an identifiable medical condition explaining symptoms attributed to Lyme disease).
RESULTS: After adjusting for age and sex, axis I psychiatric disorders were more common in CLD patients than in comparison patients... , but personality disorders were not.
Patients with CLD had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain than comparison patients.
All psychological factors except personality disorders were related to level of functioning.
A predictive model based on these psychological variables was confirmed.
Fibromyalgia was diagnosed in 46.8% of CLD patients.
CONCLUSION: Psychiatric comorbidity and other psychological factors distinguished CLD patients from other patients commonly seen in Lyme disease referral centers, and were related to poor functional outcomes.
links to a speech by Hillary Johnson, in May, 20009.
She wrote Oslers Web, which examined the CDC's etc. mind numbing/mind boggling mismanagement of CFS/ME.
It is broken into short-moderate length paragraphs.
It clearly states the actual historical dangers of medically unexplained catchall syndromes. Even MS was a psychiatric dx until the 80's, according to the author.
TC's Sigal papers and Weinstein's IDSA position, are a crystal clear picture of a similar false direction as laid out in Osler's Web.
The Sigal papers are particularly infuriating...they are invalid use of research design. There is no pre-test to determine earlier non-sick levels of functioning; there is no elimination of confounding variables such as medical abuse; there is no comparison to other chronic long term illnesses pschological status. For pete's sake, get a little common sense Segal et al.: do you think that this will fly as sound research?
RWJ hospital is the dragon's laire. It would be naive to assume they are really going to look for true causes. Beware of being a pawn with idealism.
By the way, did Time for Lyme and other charitable non-profits, require a legislative proclamation to garner donations to do good works?
(note: all I really wanted to do here was link to the H. Johnson speech, which illustrates some inherent dangers in working with "institutional politicized pseudo-medicine")
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
so - Sandy, Curly, Lisa or Artist - I would like to know
where this center would be - is it true that it would be linked to RWJ?
who is paying for this? private sector??? details please -
who is the primary researcher?
why do you need a resolution at all....raise your $$ and open a center for these NEIDs, and in NEIDs I mean minus Lyme Disease b/c it does not fall into this category
i am not saying that you should not open a center, but why are you including Lyme Disease and why did you go to the assembly and senators
if you are truly looking out for Lyme patients, why would you want ANYTHING whether a resolution or a bill that states it would "ESTABLISH TREATMENT PROTOCOLS"! (line 33) DANGER!DANGER!
and finally, why does it look like most of you who are behind this do not seem to live in NJ
Do you have any idea how corrupt our politics have been in NJ?
Any idea how many big pharma reside here?
Any idea at all how big and powerful the ins. industry is here?
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
"Actually, from what I understand the head researcher was checked out and contacted when the Resolution appeared out of no where and threatened progress being made in the Lyme community."
The person you are referring to was not contacted by LDA, or a rep. I correspond with this individual and it just didn't happen. LDA will be contacted and if Pat has any more questions she can contact him. Seems like the best way to address concerns rather than speculating on a public forum. I think we could all agree on that, since we all have been victim to gossip, no matter where we sit in the Lyme community; it is detrimental and sheds a terrible light on us as a whole.
"1. But how does contacting NJ state legislators and involving them in this process make it easier to get donations from the private sector?"
It just does...can't explain any further.
"2. I'm sorry, but in my wildest dreams I can not imagine RWJ or their dreaded ducks opening the doors to any others than their own like-minded ducks."
The institute will not have the "less than desirable people" or the pitfalls of the past at the institution where it will be located. The people involved UNDERSTAND COMPLETELY Lyme history. One of the groups involved is a well known Lyme group, a 501c3. That's why I got involved. The Lyme concerns will be represented. I don't know how much clearer I can be. Hopefully, your concerns will be put to rest as they progress with this project. You do not know the details from the resolution, nor should you, that's not the purpose of it. People can go on the NJ govt site to read the resolution themselves.
"3. First of all, if that is the case... why put Lyme in with the other disorders at all .... especially in a duck setting? "
The institute will not be a duck. The politics, and in some cases corruption, in research is not exclusive to Lyme..this is being addressed with this project. That's why there are no govt dollars funding it...that's when research has problems.
I disagree with anyone's premise that knowing what causes CFS will not benefit Lyme patients, since one of the problems we suffer from is this debilitating fatigue. Any breakthroughs for the other illnesses and disorders will have benefits to the other.
I think we can all agree that what makes us sick is rarely just about Lyme disease...you have co-infections also. You can disagree with that strategy, but it is sound and prudent to follow, and that's why they included Lyme disease.
I will conclude by saying clearly...this is not going to take away $ from LDA. Other groups like breast cancer have more than one group working towards a cure and research.
It is unrealistic and unfair to expect there be only one group representing Lyme patients, especially when this does not compete with LDA, in fact, LLMd's and their researchers will be participating.
I was fortunate to particpate at Nat Cap Lyme's Forum in March, which Phyllis and Pat were invited to go, but unfortunately could not attend or send a rep. We need to stop undermining each others efforts when we don't agree.
Part of the forum legislative aids, from both parties, were there to share with us advice. The one piece of advice they kept emphasing was that Lyme is not represented in a professional manner, and we don't treat each other with professionalism. All this community does is gossip and undermine each others efforts. There are many legislators that don't want to deal with us because of our inner problems, and the way that some, and I say SOME conduct themselves with legislators, and in public.
It is time we put forth a professional front and treat each other respectfully. Opportunities will arise with other groups that should be ceased and allowed to move forward for the betterment of all Lyme patients. Who cares who makes the advancement as long as Lyme patients benefit from it.
It is not my place to answer very specific questions on this project, since I am no longer associated with it. I will not be answering any more questions.
I will conclude that this situation needs to be handled by Pat and the researcher. Speculating is not healthy for us and is detrimental.
Best wishes-Lisa Torrey
Posts: 134 | Registered: Dec 2002
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I have had a question from the start...no one seems to either be able to answer or wants to address it.
Why would anyone want a center that would be responsible for "establishing treatment protocols"??? This sounds like more than research.
What exactly is "private sector"? Taxpayers?...private companies, are they considered private sector? if so that would include just about anyone.
We are all entitled to our opinions. With what is being written here, I have become even more adament about Lyme being excluded from this venture. I am not saying you should not proceed, just keep Lyme out of it.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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I know someone who works in an assemblyperson's office in NJ
this young friend did some digging for me
he is a good source and trust what he is saying, he has no reason to lie
he is trying to understand more about Lyme and the controversies and conflicts
he is learning
this is what he wrote and i qoute "The IDSA apparently pushed for Lyme disease to be a part of the resolution...."
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
The center would not "establish treatment protocols". It would be a safe haven for doctors to practice their own, since each Lyme patient is so different.
Private donations are just that...private. This is how you eliminate strings attached.
This young friend has his facts mixed up. IDSA has never been supportive of our efforts for advancement for Lyme and they never will. The IDSA is NOT involved or supporting this project.
When I gave the presentation in NJ before the legislators and Dept of Health, details of the IDSA's "conflicts of interest" were revealed in black and white, including the 200 plus patent info for the vaccine and diagnostic test research...my question to the legislators was this...Why do some IDSA supporters put all this time and money into research for a Lyme vaccine and a new diagnsotic test when what we have is supposedly simple enough to be "cured" with a few weeks of antibiotics, and the testing we have is great? Of course the answer is...you don't! This is part of the IDSA corruption and it proves it.
The IDSA has chosen to not be a part of the solution for us ....now it is time for us to move on. Again...the IDSA WAS NOT A PART OF THIS EFFORT AND THEY DON'T SUPPORT IT.
This is were gossip does damage...and who will pay the price? Lyme patients!
Please leave the details to Pat Smith and the researcher, for God's sake! You are making a decision to not support a project based on gossip, and with all due respect...partial info and ignorance.
If LDA gets the facts and they still don't support it then fine...just let it be.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey klc...
Thanks for commenting and sharing some of what you know about the situation. In response to your comments to me...
You quoted what I originally said... which was... "Actually, from what I understand the head researcher was checked out and contacted when the Resolution appeared out of no where and threatened progress being made in the Lyme community."
Klc... you replied... "The person you are referring to was not contacted by LDA, or a rep."
Actually, I never said the LDA made the contact. I said the head researcher was checked out and contacted .... and that is true. MUCH research was done prior to anyone making a decision about this situation or acting on it.
Klc said... "LDA will be contacted and if Pat has any more questions she can contact him."
I can't speak for LDA... as I am not an affiliate. BUT.. I saw the letter sent by all the groups. It was in the action alert they sent out.
Some of their concerns are clearly spelled out in that letter... which was SHARED with groups, patients and the public, so they would be informed about what is being planned for them without their knowledge.
Klc said.. "You do not know the details from the resolution, nor should you, that's not the purpose of it."
Actually, if I may correct you, respectfully.... I do know details. I've been working on this for a good while now and doing my research ... and getting input from a number of people.
As a matter of fact, I've read, studied, researched, made contacts with others and have written over 20 pages of notes about it so far.
And I also think ALL patients and groups should know the details and have the facts so they can make up their own minds about it ... as it will affect their lives in many ways.
The majority of patients/group leaders that I've heard from are NOT happy about it and have asked that Lyme be removed from the picture... and have shared some of their sincere concerns.
That happened BEFORE any Lyme patient or group shared with patients that they were trying to get us involved in research for autoimmune disorders and get us treated at a NJ duck motel.
And yes, I'm sorry, but RWJ is a duck motel and they have done us wrong over and over again.
Remember the old saying.. "When you sleep with dogs, you wake up with fleas."
And Northstar said it here, very clearly, in her post.... "It would be naive to assume they are really going to look for true causes."
BINGO!
If it looks like a duck, smells like a duck and quacks like a duck.... and has web feet.... it is probably a duck.
If it doesn't matter, why put it in a duck motel and not at Disney World?
Just because RWJ might have empty space... is that a good reason to stick us there under their noses?
Birds of a feather flock together. Putting Lyme in with autoimmune disorders of unknown causes .. EXACTLY what the IDSA wants to do... plays right into their hands.
NOTHING I have seen has stated officially that the IDSA won't be involved.. and this is a MAJOR sticking point.
In addition, nothing I have seen in the resolution has indicated they won't be involved with the autoimmune aspects of Lyme (their battle cry and words they live by)...
And it is being handed to them... waved in front of their faces... in their own back yard.
Klc said.. "I was fortunate to particpate at Nat Cap Lyme's Forum in March, which Phyllis and Pat were invited to go, but unfortunately could not attend or send a rep. We need to stop undermining each others efforts when we don't agree."
Again, what does this have to do with this resolution? And why keep mentioning the LDA? They've already made their voices heard and have clearly stated their position... and are not here to respond to these comments.
Rather than try to shine a light (negative or otherwise) on them or others for whatever reason ... it might be best to address the patients concerns about why this was done ... at least that is MY opinion.
BTW- For those who don't know why LDA did not attend the support group forum...
They were not informed (no one outside the organizing group was told) this was even being planned, first of all. Nor were they ever asked if there was a date that would suit them.
After it was set-up and they were invited, they kindly responded stating they already had previous Lyme related events and a trip scheduled for that time period, out-of-state.
Klc said.. "I will conclude that this situation needs to be handled by Pat and the researcher. Speculating is not healthy for us and is detrimental."
Actualy, speculating is necessary when no facts are being presented and no official information is being shared.
Asking each other why this is being done when so many are unhappy about it, could be a good thing too. MAYBE there is something that will be shared by someone to make this at least sound better... or be able to uncover a reason someone might think this would be a good thing.
So far no one has official stepped forward and answered all the patients questions. I am being contacted now, left and right, for information about it simply because I forwarded a message the other day.
And again, what does Pat have to do with this conversation between us? With all due respect... why keep dragging her into it and not simply respond to the patients who are concerned about this Center and it's mission and what it means to them?
And I do believe the LDA has already "handled it", as have many other groups nation wide (over 30 on one letter alone). They apparently don't like this plan ... which is obvious by the letter they submitted.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Klc said.. "Please leave the details to Pat Smith and the researcher, for God's sake! You are making a decision to not support a project based on gossip, and with all due respect...partial info and ignorance."
Actually, everything that NJ and others read in the letter that was composed and sent out is fact ... not gossip.
Everything stated in the Action Alert is to inform patients of a potential problem ... and that was sent out due to a deep concern for patient's welfare.... and is actively addressing what many do not want to see happen.
If people read it and it is from a trusted source, as this certainly is, they should be able to react.
To not share "details" or reasons why this Resolution was done at this point ... not to mention earlier BEFORE this was done...
Is not really a happy thing.
And again, Pat was tossed in this mess ... and why?
To tell sick patients to let some unknown researcher (KF) who is planning to bed down with RWJ.. or build a Center to treat Lyme as an autoimmune disorder in the middle of a duck motel is very concerning.
You admitted you don't have all the answers (understandable).. but you do need to realize that someone who is behind this should be out there explaining what they are doing and answer the concerns being raised ... with facts about the project and not distracting chit chat about Pat.
Reclassifying Lyme as an autoimmune disease and having patients report to a Center devoted to other disorders like the IDSA has been pushing on us for years is just plain dangerous... in MY opinion.
````````````````````````````````````````````````
If anything I am stating here is gossip and not fact, please point it out to me and I will address it.
If someone here is attempting to make a decision on "partial info and ignorance", as you so nicely claimed....
They aren't, but I'll pretend here for the sake of the point...
It may be because people were not informed this was happening and are still not having their genuine concerns addressed officially by those who want us lumped in with the IDSA's bogus theories ... in an IDSA run environment, no less.
````````````````````````````````````````````````` klc said... "If LDA gets the facts and they still don't support it then fine...just let it be."
LDA has the facts. They still don't support it.
In fact, they indicate it could be a problem for us.
So, to "let it be" may not be in the best interest of patients.
quote:Originally posted by Tincup: For those not familiar with Robert Wood Johnson... here are a few samples of their work.
They, more often than not, publish articles strongly supporting the notion that "it's all in your head" and "there is no such thing as chronic Lyme disease".
````````````````````````````````````````````````` Environ Health Perspect. 2002 Aug;110 Suppl 4: 607-11.
Contributions of societal and geographical environments to "chronic Lyme disease": the psychopathogenesis and aporology of a new "medically unexplained symptoms" syndrome.
Sigal LH, Hassett AL.
Division of Rheumatology and Connective Tissue Research, Department of Medicine, Lyme Disease Center, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick, New Jersey 08903-0019, USA. [email protected]
Lyme disease is a relatively well-described infectious disease with multisystem manifestations.
Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, "chronic Lyme disease," has become established.
Chronic Lyme disease is the most recent in a continuing series of "medically unexplained symptoms" syndromes.
These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings.
We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia.
Psychiatric comorbidity and other psychological factors in patients with "chronic Lyme disease".
Hassett AL, Radvanski DC, Buyske S, Savage SV, Sigal LH. Division of Rheumatology and Connective Tissue Research, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick, NJ 08903-0019, USA. [email protected]
Instead, psychological factors likely exacerbate the persistent diffuse symptoms or "Chronic Multisymptom Illness" (CMI) incorrectly ascribed to an ongoing chronic infection with B. burgdorferi.
Role of psychiatric comorbidity in chronic Lyme disease.
Hassett AL, Radvanski DC, Buyske S, Savage SV, Gara M, Escobar JI, Sigal LH.
University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick, NJ 08903-0019, USA. [email protected]
OBJECTIVE: To evaluate the prevalence and role of psychiatric comorbidity and other psychological factors in patients with chronic Lyme disease (CLD).
Patients with CLD had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain than comparison patients.
A predictive model based on these psychological variables was confirmed.
Fibromyalgia was diagnosed in 46.8% of CLD patients.
CONCLUSION: Psychiatric comorbidity and other psychological factors distinguished CLD patients from other patients commonly seen in Lyme disease referral centers, and were related to poor functional outcomes.
I browsed through and edited some of this RWJ duckdumb posted by TC -
My experience:
The medical establishment tried like crazy to pin a psychological explanation on all the strange symptoms those of us in fibro groups were going through.
They sent us to psychologists and psychiatrists who would try to find stuff on us, and it would just befuddle me that so many symptoms could even be thought to arise from what I experienced as a fairly normal upbringing.
Aporia? Hardly. I recall a tremendous clarity in descriptions by everyone of the struggles they were going through and what they were looking for, which was relief; I remember a lot of really intelligent people in search of answers.
I don't know if anyone of you have seen or read the play "Six Characters In Search Of An Author" by Pirandello - it's about six characters trying to figure out their existence and interactions without an author to tell them what their roles or lines are -
but that's what we were like: what's wrong with us and who can explain this crazy upside-down plot change in our lives?
I suppose our version could have been called Sick Characters in Search of A Doctor...
Finally the psych-me-outers decided that it must be family disagreements about what was going on with me that was causing my symptoms.
Now, with 20/20 hindsight, I can recognize the relevant facts in my case:
A known tick bite in 1981. Ten weeks later, stiff neck and shoulders. Eighteen months later, full-blown head-to-toe fibromyalgia symptoms. Nothing I tried affected it.
25 years later, I found out what happened. Got a positive IGeneX test. After just one week on clindamycin 150mg/4x day, I had no more fibromyalgia pain. Continues to this day like that, from taking clindamycin 150mg 2x/day.
It couldn't be clearer.
Therefore, it makes sense to me to have nothing to do with these RWJ folks, who are interested in continuing to obscure the truth of what's going on, and probably do a money-grab for funds too.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Still waiting for this question to be answered, and this is directed to those who seem to be all for this resolution:
Who is this head researcher? Who are the medical or scientific team involved with this.
There should be no mystery here.
If they are proud of what they are doing, then they should have no problem with having their name attached to it.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Issues are being addressed professionally by those who are involved. The truth will be published soon. Be calm, collected and breathe. SandiB
Posts: 991 | From USA | Registered: Aug 2001
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I think this could be REAL bad considering the fact that I live in NJ and have been on Workers Compensation and Disabilty for 3 years due to Lyme and TBD's.
If WC catches wind of this place, I'll be in a straight jacket for sure.......
CORRECTION... they would have to drag me alive to that facility.
THIS IS BAD!!!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 05-04-2010, 01:58 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 05-04-2010, 01:58 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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posted
Don't forget art therapy too - I had that for fibro pain at a rehab hospital!
Oh, I felt much better afterwards - took several weeks for my symptoms to return.
And if you believe that, I have a bridge to sell you somewhere...
Why don't we just beat them to the punch and put together the curriculum for them? We've probably already experienced it...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
received this from Senator Bateman by email:
" have attached a letter explaining the reasons for my support of SR-133.The inclusion of Lyme Disease in the bill allows Lyme Disease research to be accelerated and can lead to new therapeutics for Lyme Disease patients. The NeuroEndocrineImmune Center (NEI) does not classify Lyme as an ``autoimmune'' disorder, but the current and future classification of Lyme Disease does not preclude an ``autoimmune'' component from being present in Lyme. NEI is fully supported by the ``Center for Disease Control and Prevention'' and ``National Institute of Health.''
Senator Kip Bateman
the letter that was attached (and this is the best I can do with my computer skills):
PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY - 501 c 3 - ID # 550795076 C/O VI�A + COMPANY, 255 Alhambra Circle, Suite 715, Coral Gables, Florida 33134 Phone: 305-441-1591 Volunteer Help line: 954-783-6771 - 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.
October 12, 2009 New Jersey Senator ``Kip'' Bateman Via e-mail
Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Center� and the Inclusion of Lyme Disease
Dear Senator Bateman:
The NeuroEndocrineImmune (NEI) Center� (of New Jersey) is dedicated to research, patient care, education, and community social services for patients with a group of illnesses that affect the nervous, endocrine, and immune systems. The body of current scientific research confirms that these illnesses share commonality and overlap of symptoms, which suggest shared pathophysiological mechanisms that produce chronic illness in these patients. For example, in recent and in-press publications, researchers have reported that approximately 30% of previously diagnosed chronic fatigue syndrome (CFS) patients test positive for Lyme disease (LD). The Center for Disease Control and Prevention (CDC- William Reeves) at the May 27-28, 2009, CFS Advisory Committee meeting stated that Lyme disease is known to be a potential trigger for CFS. Therefore, if some patients with CFS are treated for LD, their quality of life and health will improve considerably.
The NEI Center� is dedicated to increasing knowledge, improving patient care, developing new therapies, and serving as a repository and dispenser of scientific information regarding these illnesses. It is not the intent or role of center personnel to classify or reclassify or to name or rename any of these illnesses.
The NEI Center� is committed to the development of a robust, healthcare community within the State of New Jersey. We believe that any interested party who wishes to mount a research, patient care, educational, or social services program within the state, and who is willing to abide by the laws and safeguards provided by the state and the federal governments, has the right to engage in such activity without the infringement or opposition of another organization.
Representatives of the NEI Center� believe it is unfortunate and misguided for an alleged patient advocacy group to oppose efforts to enhance research, patient care, education, and community social services for an illness that the patient advocate group claims to represent. The motivation of such a group is suspect.
With regard to recently written materials already being circulated on the Internet and the comments made by a patient advocate group that has gone on record as opposing the inclusion of Lyme disease in the disorders to be studied at the NeuroEndocrineImmune (NEI) Center�, we respond:
* The NEI Center� (also referred here as the Center) will serve as a repository for all data generated by its investigators and by those researchers who wish to submit their data to the Center.
* The NEI Center� has not, and will not, address the issue of the classification of any of the illnesses being studied within the center or elsewhere. It is the position of the NEI Center� that the classification of illnesses (be they diseases or syndromes) is the responsibility of the World Health Organization, which catalogues and classifies the recognized illnesses of the world. (ICD10/ICD9). It would obviously be presumptive of the NEI Center� to usurp or attempt to alter the work of the World Health Organization.
* The NEI Center�, as does Western medicine, recognizes the distinction between symptomatic treatment and curative treatment of illness. Although curative treatment is the ideal goal of health care, curative treatment is not available for all illnesses. When such treatment is not available, or even if it is available, symptomatic treatment is standard medical procedure. Thus, for a patient with pneumonia, antibiotic treatment may be curative, but such treatment does not preclude the physician from dispensing medication that will ease the patient's cough or reduce his or her fever.
* The NEI Center� believes that many neuroendocrineimmune disorders have complex etiologies. Many researchers and physicians feel that long-term, chronic infection will deplete and invoke changes in the immune system. Multiple co-infections are now being found in many chronically infected patients. To preclude the investigation of co-infections in patients with Lyme disease based on the fear that such findings would suggest immune system abnormalities as stated by this patient advocate group in Lyme disease patients (see attachment), does a significant disservice to Lyme disease patients and prevents the freedom of scientific inquiry that is the basis of success in biomedical research and the development of new therapeutic agents and procedures.
* The NEI Center� maintains that Lyme disease, as well as the other neuroendocrineimmune disorders (NEIDs) that the center embraces, is not currently classified as autoimmune disorders. Unless future scientific research demonstrates otherwise, Lyme disease will always remain in its current class of illnesses and, thus not be included or classified as an autoimmune disorder. However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease. The NEI Center� and the biomedical research community should be permitted the right to investigate the possible presence of an autoimmune component in chronic or persistent Lyme disease (PLD) or the induction of autoimmune defects in persons exhibiting chronic or PLD.
* The NEI Center� believes that the inclusion of Lyme disease in the center's mission will accelerate research and the development of therapeutics for patients with LD as well as speed up research and development of therapeutics for illnesses with shared and overlapping symptoms.
* The concept and mission of the NEI Center� is a scientific, medical, pharmaceutical, and patient-driven grassroots initiative that aim for quality of life solutions for a large population of Americans that for far too long have been forgotten and underserved within our current medical system. The overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health.
* The NEI Center�, as proposed, complies with the new biomedical research model being promoted by the NIH and will stand as an example of the implementation of its Roadmap Initiative.
* The enhanced and accelerated study of neuroendocrineimmune illnesses, including Lyme disease, at the NEI Center� can only improve the knowledge of and therapeutics for all these illnesses. There are no negative aspects to the inclusion of any related illness in the mission of the NEI Center.
We appreciate the opportunity to respond to you on this important issue and we are at your disposal for any questions you or your staff may have on this crucial piece of proposed legislation. It is with great gratitude that we say that passage of this historical piece of legislation by the New Jersey Senate, complementing the legislation already passed in the Assembly, will not only be a moral and significant victory for the citizens of the great State of New Jersey, but it will be one that will impact millions of Americans. Passage of this resolution will happen because of your vision, compassion, and caring for the citizens you so proudly represent. You will be a champion for not only our community of suffering, but for every American affected with these significant healthcare challenges. You will be making a difference in the lives of the many individuals whose voices are being silenced by the devastating consequences of these illnesses.
In Good Health and In Beauty,
Marly "Marla" C. Silverman Sandi Lanford Marly C. Silverman Sandi Lanford Founder Director-at-Large Founder & President P.A.N.D.O.R.A., Inc. P.A.N.D.O.R.A., Inc. Founder, The Lanford Foundation-Lifelyme, Inc. www.pandoranet.infowww.lifelyme.org
Cc: New Jersey Senate Legislature Roster
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
please note the last line of Sen.Bateman's response above:
NEI is fully supported by the ``Center for Disease Control and Prevention'' and ``National Institute of Health.''
Senator Kip Bateman
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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The tone of your last comment to me is patronizing - maybe it was not meant to be - but really! "Be calm, collected and breathe."!!!
Are you serious!
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
and as far as private parties funding....how many of our pharma companies would want part of this research!
-------------------- 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 |
sorry - you can't get rid of me - too much at stake here
and NJ patients - I know you are there and listening and acting - Sen Bateman's office was so busy with calls, they almost forgot to take my name and info - so i asked for an email response to make sure that they were taking count
they seemed a little flustered by the "fuss" and i had the phone slammed on me ....
but I did get my email
my point is - even though NJ Lyme patients may not be showing up here, they are acting
and if you are a patient,caregiver, parent ....
and haven't acted on this...please do not wait any further
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Now that we have an idea of who the researher will be...
We need to know who the possible Doctors will be...
The researcher is an Associate Professor of Pharmacology and Physiology at the University of Medicine and Dentistry of NJ
the teaching hospital associated with this fine medical school is Robert Wood Johnson
the facility will most likely be at one of these 2 locations - it was mentioned before - there are empty buildings waiting...
so the question of the hour is: who are the possible candidates for the medical director or medical team that will be overseeing this center?
- don't worry - i am relaxed and breathing - and thank goodness for my current tx - b/c it is starting to help my brain think a little -
and if this was just a week ago - i would not have been able to complete more than one or two sentences
waiting for answers -
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
oh and by the way - the music therapy comment was funny -
i haven't been able to listen to music for many years - love music - loved to sing and dance when young - but now i live in almost complete silence since my nervous system cannot handle it
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 05-04-2010, 01:59 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Kenneth Friedman PhD Assoc. Professor of Pharmacology and Physiology New Jersey Medical School
Notice that the proposed Child and Adolescent Category (yes, they do like insurance acronyms). does NOT include tick borne diseases as a differential. Uses irritable bowel and a generic neurological diseases, etc. as differentials. No pathogens other than viruses are mentioned.
Also notice the striking similarity with tbd symptoms.
Look at the major focus on psychological/mental health.
Not one word about finding a pathogen or pathogens.
Interesting that there is no mention of tbd's until the interest of the pandora and lymelife came into the picture, perhaps as a possible monetary source for the cfs research.
He has stated earlier that funding for federal cfs research has dwindled. Looking for more funding? Just bring in lots of things...sort of like running a multiple hook line, rather than a single hook, when fishing. --------------------------------------------------------------------------
He has ties with CDC and NIH but appears to be a strong advocate for CFS.
Claims there is a physiological basis for it, but ignores any disease mechanisms other than an unknown association with some viruses.
As he is a pharmacologist, I would expect he would be looking for pallatiative care via new drugs. Yet, what is seen in the NJ med school profile is an interest in operant conditioning and music, for pain, as research interests. Huh?
NJ is the home of Pallone.
Perhaps IDSA would just love to see lyme/tbd's thrown in with the Unknown Etiologies Looking for Pallatiative Coverups.
Perhaps there has been a promise of research funds to encourage this new perspective, which IDSA also has promulgated via their recent plethora of simplistic psychological profile attempts of "chronic lyme". Since lyme patients have received their 30 day "cure", what else is left but another nameless dysfunction or dysregulation.
People have sold out for less in order to advance their own agenda.
Weinstein's words ring out pretty loud....one knows where IDSA would like to put chronic lyme, and it is not in the realm of "cure" or even "remission".
Do not be a pawn for other's power agendas, nor fall victim to your own. You will get sacrificed along the way, as will others.
And to think that CFS/ME, FM, GWS, MCS, and CLD individually have had decades of individual research, with no cause no cure etc found yet.
Bringing them under one massive umbrella will bog down research even more. Can it get even slower? Surprised they did not throw in Morgellons except the Kaiser/CDC psych profile is not out yet...
Why not just sponsor conferences where the various fields can share knowledge?
Or sponsor a study where they know already know tbd's?
This NEID path is fraught with dangers and is a totaly inefficient use of money.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
you are right Optimistick - this would affect all of us - not just NJ
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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bettyg
Unregistered
posted
breaking this up to read for severe neuro lyme folks like me/others ... betty
quote:Originally posted by njlymemom:
received this from Senator Bateman by email: ********************************************
" have attached a letter explaining the reasons for my support of SR-133.
The inclusion of Lyme Disease in the bill allows Lyme Disease research to be accelerated and can lead to new therapeutics for Lyme Disease patients.
The NeuroEndocrineImmune Center (NEI) does not classify Lyme as an ``autoimmune'' disorder, but the current and future classification of Lyme Disease does not preclude an ``autoimmune'' component from being present in Lyme.
NEI is fully supported by the ``Center for Disease Control and Prevention'' and ``National Institute of Health.''
Senator Kip Bateman
the letter that was attached (and this is the best I can do with my computer skills):
PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY - 501 c 3 - ID # 550795076
Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Center� and the Inclusion of Lyme Disease
Dear Senator Bateman:
The NeuroEndocrineImmune (NEI) Center� (of New Jersey) is dedicated to research, patient care, education, and community social services for patients with a group of illnesses that affect the nervous, endocrine, and immune systems.
The body of current scientific research confirms that these illnesses share commonality and overlap of symptoms, which suggest shared pathophysiological mechanisms that produce chronic illness in these patients.
For example, in recent and in-press publications, researchers have reported that approximately 30% of previously diagnosed chronic fatigue syndrome (CFS) patients test positive for Lyme disease (LD).
The Center for Disease Control and Prevention (CDC- William Reeves) at the May 27-28, 2009, CFS Advisory Committee meeting stated that Lyme disease is known to be a potential trigger for CFS.
Therefore, if some patients with CFS are treated for LD, their quality of life and health will improve considerably.
The NEI Center� is dedicated to increasing knowledge, improving patient care, developing new therapies, and serving as a repository and dispenser of scientific information regarding these illnesses.
It is not the intent or role of center personnel to classify or reclassify or to name or rename any of these illnesses.
The NEI Center� is committed to the development of a robust, healthcare community within the State of New Jersey.
We believe that any interested party who wishes to mount a research, patient care, educational, or social services program within the state, and who is willing to abide by the laws and safeguards provided by the state and the federal governments, has the right to engage in such activity without the infringement or opposition of another organization.
Representatives of the NEI Center� believe it is unfortunate and misguided for an alleged patient advocacy group to oppose efforts to enhance research, patient care, education, and community social services for an illness that the patient advocate group claims to represent.
The motivation of such a group is suspect.
With regard to recently written materials already being circulated on the Internet and the comments made by a patient advocate group that has gone on record as opposing the inclusion of Lyme disease in the disorders to be studied at the NeuroEndocrineImmune (NEI) Center�, we respond:
* The NEI Center� (also referred here as the Center) will serve as a repository for all data generated by its investigators and by those researchers who wish to submit their data to the Center.
* The NEI Center� has not, and will not, address the issue of the classification of any of the illnesses being studied within the center or elsewhere.
It is the position of the NEI Center� that the classification of illnesses (be they diseases or syndromes) is the responsibility of the World Health Organization, which catalogues and classifies the recognized illnesses of the world. (ICD10/ICD9).
It would obviously be presumptive of the NEI Center� to usurp or attempt to alter the work of the World Health Organization.
* The NEI Center�, as does Western medicine, recognizes the distinction between symptomatic treatment and curative treatment of illness.
Although curative treatment is the ideal goal of health care, curative treatment is not available for all illnesses.
When such treatment is not available, or even if it is available, symptomatic treatment is standard medical procedure.
Thus, for a patient with pneumonia, antibiotic treatment may be curative, but such treatment does not preclude the physician from dispensing medication that will ease the patient's cough or reduce his or her fever.
* The NEI Center� believes that many neuroendocrineimmune disorders have complex etiologies.
Many researchers and physicians feel that long-term, chronic infection will deplete and invoke changes in the immune system.
Multiple co-infections are now being found in many chronically infected patients.
To preclude the investigation of co-infections in patients with Lyme disease based on the fear that such findings would suggest immune system abnormalities as stated by this patient advocate group in Lyme disease patients (see attachment),
does a significant disservice to Lyme disease patients and prevents the freedom of scientific inquiry that is the basis of success in biomedical research and the development of new therapeutic agents and procedures.
* The NEI Center� maintains that Lyme disease, as well as the other neuroendocrineimmune disorders (NEIDs) that the center embraces, is not currently classified as autoimmune disorders.
Unless future scientific research demonstrates otherwise, Lyme disease will always remain in its current class of illnesses and, thus not be included or classified as an autoimmune disorder.
However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease.
The NEI Center� and the biomedical research community should be permitted the right to investigate the possible presence of an autoimmune component in chronic or persistent Lyme disease (PLD) or the induction of autoimmune defects in persons exhibiting chronic or PLD.
* The NEI Center� believes that the inclusion of Lyme disease in the center's mission will accelerate research and the development of therapeutics for patients with LD as well as speed up research and development of therapeutics for illnesses with shared and overlapping symptoms.
* The concept and mission of the NEI Center� is a scientific, medical, pharmaceutical, and patient-driven grassroots initiative that aim for quality of life solutions for a large population of Americans that for far too long have been forgotten and underserved within our current medical system.
The overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health.
* The NEI Center�, as proposed, complies with the new biomedical research model being promoted by the NIH and will stand as an example of the implementation of its Roadmap Initiative.
* The enhanced and accelerated study of neuroendocrineimmune illnesses, including Lyme disease, at the NEI Center� can only improve the knowledge of and therapeutics for all these illnesses. There are no negative aspects to the inclusion of any related illness in the mission of the NEI Center.
We appreciate the opportunity to respond to you on this important issue and we are at your disposal for any questions you or your staff may have on this crucial piece of proposed legislation.
It is with great gratitude that we say that passage of this historical piece of legislation by the New Jersey Senate, complementing the legislation already passed in the Assembly, will not only be a moral and significant victory for the citizens of the great State of New Jersey, but it will be one that will impact millions of Americans.
Passage of this resolution will happen because of your vision, compassion, and caring for the citizens you so proudly represent.
You will be a champion for not only our community of suffering, but for every American affected with these significant healthcare challenges.
You will be making a difference in the lives of the many individuals whose voices are being silenced by the devastating consequences of these illnesses.
In Good Health and In Beauty,
Marly "Marla" C. Silverman Sandi Lanford Marly C. Silverman Sandi Lanford Founder Director-at-Large Founder & President
P.A.N.D.O.R.A., Inc. P.A.N.D.O.R.A., Inc. Founder, The Lanford Foundation-Lifelyme, Inc.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin 43456 said... "Why don't we just beat them to the punch and put together the curriculum for them? We've probably already experienced it..."
You all have sure done a LOT of research and I appreciate you sharing all these details.
I'm afraid this project is truly going to be something that affects ALL of us negatively, both nationally and internationally.. if it is allowed to take root in NJ.
It has far-reaching consequences and in MY opinion, it can set a dangerous precedent.
I do believe some of the folks involved originally had good intentions. I really do.
I am just SO sorry they feel that keeping things from others... especially something that will affect so many lives and is so complex... is still the best way to go.
I keep hearing the worn out catch phrase from some of the Lyme groups who aren't working together saying, "We have to work together!"
This is NOT the way to show they are sincere.
HAD anyone involved in this project even made ONE call or sent ONE email to others in the Lyme community about this in advance ... even a private communication to one of many people who would have been happy to provide assistance....
The major problems could have been addressed early on.
This would have saved people SO much time, work, frustration and heart ache.
OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
Northstar, the FISHING analogy - going fishing with multiple hooks to see what they catch - is very apropos here.
And Fat Lymies with Money and Stupidity is part of the Catch they may be looking for.
Lyme does not belong in this newly created category for all of the reasons outlined and more.
Regardless of WHO they get to head the institute as Research or Medical Director, Lyme does not belong IN THIS INSTITUTE.
That's the message, New Jersey and National people.
Lyme does NOT belong under the brand-shiny-new-newly-trademarked-for-$$-umbrella of NEID or NeuroEndocrineImmune Disorder, or since they have lately been dropping the DISORDER part, the newly created NeuroEndocrineImmune classification.
That message above all others.
Lyme has a known bacterial cause and over 21,000 research papers investigating it - don't throw it in with the new Loony Bin for disorders of unknown origin, which some contingents will be using as the "loony bin" for all MUS - Medically Unexplained Symptoms, and with the Dysfunction/Psychiatric jargon of the IDSA July Panel.
Lyme disease MUST be out of the proposed resolution and OUT of the new Center.
And BTW if I were the CFS people or the Fibromyalgia people or anyone of the other diseases or disorders, I would be furious at being put under this new umbrella as well. I would be furious at being labelled by the IDSA panel speakers last July and I would be furious at being classed as MUS.
What happened to concensus building that SHOULD have gone on well in advance, between all of these disease groups, to brainstorm on THE NEED for this center and to engenger support?
Let alone being classified under this new umbrella?
[ 10-16-2009, 09:02 PM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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posted
I have been one of the fibromyalgia people and my fibromyalgia is Lyme disease. So much for unknown etiology on that one, although they try vewy, vewy hard to keep it that way.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Is THIS garbage really necessary?
This is from a letter to potential supporters of PANDORA's efforts... and I quote.
"We have composed a letter clarifying the convoluted issues that have recently been raised by Pat Smith, president of the Lyme Disease Association.
LDA is a patient advocacy group for Lyme disease. Most of you are familiar this organization.
In case you have read any of the comments on the internet blogs coming from members of this advocacy group you know they are expressing their displeasure over the NEI Center we are presently persuing to establish in New Jersey.
The information they have dispersed is mean't to discredit us and our mission.
However, inorder to keep the facts straight we have composed a response letter to counter their many inaccurate and false statements."
`````````````````````````````````````````````````
The LDA and MANY MANY groups across the country... and individual patients.... have stated objections to the word "Lyme Disease" being used in a list of Neuro-Endocrine Immune Disorders.
They wrote and asked legislators to please remove it.
THAT'S ALL!
And in return ONE person gets trashed for their efforts?
The letter said.. "The information they have dispersed is mean't to discredit us and our mission."
HELLO!!!!!!
It's NOT all about YOU! Get over yourselves and stop trashing others!
The information was sent out to inform patients of what others are doing behind the scenes that they haven't bothered to mention.
The information was sent out to let folks know they are in trouble if they allow a Center at RWJ to control Lyme treatment and set the rules.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And where did the term NEI come from?
According to their letter...
`````````````````````````````````````````````````
"It was Marla Silverman who came up with the name - Neuroendocrine Immune Disorders (NEIDs).
Under the umbrella of Neuroendocrine Immune Disorders are listed the following diseases: Chronic Fatigue Syndrome, Fibromyalgia,, Gulf War Syndrome, Multiple Chemical Sensitivities, and Persistent Lyme Disease."
Now she may be a perfectly lovely lady and I know nothing of her ... BUT... in MY opinion....
She has NO right to waltz into a war we are fighting and we have been fighting for years on end to help our families, neighbors and children...
And with the snap of her fingers stick countless numbers of sick Lyme patients in a made-up category of illnesses with NO KNOWN cause ...
And put us all under the devises of a known DUCK HOTEL that none of us would ever go to because of their rotten Lyme reputation....
And risk all of us losing our ability to receive treatment, be reimbursed by insurance and protect our doctors current treatment protocols because she doesn't know what she is doing.
Did she ever consider ASKING us if this is what we wanted or if this was what is best for us?
NO!
And when we find out accidently what she has done without our knowledge ... and reasonably object by asking those involved with the Resolution to take Lyme off a list of diseases with no known cause OFF her list...
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
quote: n case you have read any of the comments on the internet blogs coming from members of this advocacy group you know they are expressing their displeasure over the NEI Center we are presently persuing to establish in New Jersey.
The information they have dispersed is mean't to discredit us and our mission.
comments from members of this advocacy group
Wrong. This poster is not a member of any group.This poster deals in issues, with no organizational affiliation information...is mean't [sic] to discredit us Wrong. Pointing out weak spots and problems down the road is not discrediting. It is constructive criticism.
Summary: the quoted statement misrepresents and misinterprets what is seen here on this board.
our mission Mission? That is an interesting point of view and flamboyant terminology, typically used to consolidate groups, and add emotional value to objectives, in order to provide a "higher order" blessing upon the actions of a group.
Other flamboyant campaign rhetoric terms:
Moral victory...... Your vision..... Your compassion......
quote: moral and significant victory for the citizens of the great State of New Jersey, but it will be one that will impact millions of Americans.
Passage of this resolution will happen because of your vision, compassion, and caring for the citizens you so proudly represent.
posted
Ok, here is an RWJ starter curriculum for diseases-of-unknown-etiology.
First, a questionnaire regarding health conditions. If anyone thinks they know what they have, they are disqualified.
Then, first class: history of undiagnosed diseases.
Second class: history of undiagnosing diseases. This includes all testing that undiagnoses any clear diagnosis we may have received.
Extra credit: coming up with lots of acronyms for having an undiagnosed condition. For starters: MUS (Medically Undiagnosed Symptoms), WTHDIH (What The H*** do I Have?),
IMHBYM (It Must Have Been Your Mother), SITWOTAOTS (Something In The Water Or The Air Or The Soil), etc.
Third class: A Practicum - Some actual relief techniques: breathing deeply, chanting, humming, listening to music (bring your favorites to share), making art projects, mask making,
stress lowering (of course - how could we forget that? maybe some massage);stretching, or just thinking about stretching
writing a letter to yourself about your goals, then sharing what you wrote with someone else in the group;
writing a letter about all the things you no longer want in your life, then ripping it up in a group ritual, etc.
Fourth class: field assignment - interviewing others who Moved On with their life in spite of their unidentified afflictions, and reporting back.
Determining what the common denominators were that allowed them to do so. No fair counting those already six feet under.
Fifth class: drama therapy. Vision questing: coming up with a vision of yourself doing what it is you would like to be doing in spite of your unidentified condition. Act it out.
Sixth class: hypnotherapy. Memorize several class lines: I do not have anything wrong with me. Whatever it is I think I might have, I don't.
I am not powerless over my neuroendocrineimmune*/missingenzymes/faultymetabolism/lostsleep/painpainpain/lostbrain/can'tfeelanythingthere/lossofvimandvigor/missing bodilyfunctions/earringing/heartpalps/invisibleitching/memorywhatmemory?
/nojobanymore/nomoneyleft/nofriendsleft/nofamilyleft/nohousingleft/nosanityleft unidentified health condition.
Seventh class: carless folks, and how they did it. This relates to autoimmunity.
Eighth class: invited motivational speaker Swami Beyondananda with his motivational products, including his bestselling book Driving Your Own Karma and empty box of nothing
(nothing sells like nothing; nothing down, nothing lost; nothing to it, nothing succeeds like success, etc).
Fun class: cooking class - bring your favorite recipes. To learn how to focus on Other Things In Life.
Second fun class: Sick Humor. Humor is good for you.
Extra extra credit: write an essay comparing UFOs and UHCs (Unidentified Health Conditions). Discuss issues of reality/unreality, whether psychological issues are primary or not in both cases.
I'm sure there's room for more class curriculum here...
* nerndocrimune for short, like fer shur
[ 10-19-2009, 04:51 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
NEW ACTION ALERT...
Oct 18, 2009
Senate Sponsor States- "NEI is fully supported" by CDC & NIH
From: Lyme Disease Association, Time for Lyme, CALDA, & Lyme Disease Association of Southeastern Pennsylvania
HISTORY
In our last Action Alert, we informed you of a Resolution already passed by the New Jersey Assembly for a "Neuro-Endocrine Immune (NEI) Center."
Click here to see the letter currently asking the New Jersey Senate to remove "Lyme disease" from the Resolution (SR 133) it will soon consider.
WHO: National Alert! We need everyone across the USA to contact the NJ State Senate Health, Human Services, and Senior Citizens Committee members listed below, since more centers are being planned in more states.
WHEN: Start immediately.
WHAT: Talking points and email suggestions to address Resolution SR-133
Ask NJ Senators to remove "Lyme disease" from Resolution SR-133!
You can tell them that including Lyme disease with disorders of unknown origin will set Lyme research and treatment back.
You can tell them the IDSA, insurance companies and others will use the classification to prevent you from receiving appropriate treatment.
You can also tell them non-treatment or treating symptoms only and not the source are some of the reasons you are in this current situation.
Provide name, address and contact info (if a group, provide the group's name).
Patients with Lyme disease should be alarmed by the recent effort to recategorize chronic Lyme disease as autoimmune, or to place it under a term apparently coined by P.A.N.D.O.R.A. for their own purposes, specifically, "Neuro-Endocrine Immune Disorder."
Lyme disease has a KNOWN ORIGIN - Borrelia burgdorferi. It should not be classified with these other conditions which are treated only to manage symptoms.
Managing symptoms ONLY, while allowing a complex infection to progress unabated, is not in the best interests of patients with Lyme disease.
The inclusion of Lyme disease in this Center's mission is a national concern for ALL Lyme patients since P.A.N.D.O.R.A. reports, "once the NEI Center is in full operation it is our vision to setup satelite NEI Centers in other states."
We are concerned that in response to your personal contacts with NJ legislators, promoters of the proposed "Neuro-Endocrine Immune (NEI) Center�" contacted all NJ legislators, stating in part, "it is unfortunate" and a "misguided" attempt "for an alleged patient advocacy group to oppose [our] efforts."
Please note, no one opposed their efforts, only the inclusion of Lyme disease. We applaud efforts to increase research and improve treatment for those negatively affected by any conditions that have no known cause, however, we know Lyme disease is not in that category.
An additional concern- this same group recently reassured NJ legislators that the "overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health."
NJ Senator Bateman, the Resolution's primary sponsor, also responded to patients' letters confirming that the "NEI is fully supported by the 'Center for Disease Control and Prevention' and 'National Institute of Health.'"
Additionally, NJ Legislators have informed us they are being told that New Jersey doctors can treat Lyme however they want, which is not the situation at all.
This effort is spear-headed by CFS advocate, Kenneth Friedman, PhD, UMDNJ, and a Florida-based "neuro-endocrine immune" support group, P.A.N.D.O.R.A., for which he is Director of Public Policy.
The Center will be located at the University of Medicine & Dentistry of New Jersey, home to both Mr. Friedman and Robert Wood Johnson Medical School.
We are concerned that Robert Wood Johnson Medical School (deeply involved in the Lyme vaccine clinical trials & was home to someone acknowledged in the IDSA Guidelines) has published numerous articles strongly discounting the notion that chronic Lyme disease symptoms remain after standard IDSA treatment.
If symptoms remain, they are either considered by them to be psychiatric in nature or a result of autoimmune disorders, such as fibromyalgia and chronic fatigue syndrome.
At the recent IDSA Lyme Guidelines Review Panel hearing, it was reported that, "these syndromes have more in common than their apparent differences would suggest and may be best considered under the rubric of a Functional or more accurately, Dysfunctional, Somatic Syndrome."
Here is a sample note to paste on an email or adjust as you'd like.
Dear Senator,
Please remove the "Lyme disease" language from Resolution SR- 133.
Including research efforts or treatment for Lyme (Borrelia burgdorferi) in plans for a Center focusing on autoimmune disorders, especially in a highly endemic state like New Jersey, will not be advantageous to those with Lyme disease for many reasons.
Lyme disease has a known organism causing the symptoms patients experience, where as the disorders the proposed Center is designed to encompass do not.
Many patients find it difficult to be properly diagnosed and treated for their ongoing infections as it is; and diluting the ability to cure Lyme by eliminating its source, by focusing only on symptomatic treatment, will serve to do no more than extend the suffering patients experience.
Insurance companies already deny much needed treatment for Lyme disease and reclassifying it will only add to the problems.
Thank you for supporting a Center to help those with true autoimmune disorders, however, please do not put our future in jeopardy by lumping Lyme disease in with conditions with no known cause and no known treatment.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
I think we could also add comments that fibromyalgia for many people is actually the Lyme bacterial condition, and thus no longer an unknown condition;
and also, that an RNA retrovirus is currently being examined as a possible cause for CFS.
Posts: 13116 | From San Francisco | Registered: May 2006
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in there she has all the email addresses grouped together and a letter already written. ******************************************
njlymemom, would you edit your subject line showing the date you started this? getting confusing with tincups now and i anticipate another 1-2 more in NEAR future since this is a hot topic.
just click on pencil in your 1st post at very top; thx my friend. we neuro lyme folks need all the help we can get. hugs/kisses
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Looks like Robin 3267549 has her thinking cap on tonight.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
The NEI proposal states according to the above Pandora letter:
quote: The NEI Center� and the biomedical research community should be permitted the right to investigate the possible presence of an autoimmune component in chronic or persistent Lyme disease (PLD) or the induction of autoimmune defects in persons exhibiting chronic or PLD.
The are saying there IS a chronic Lyme disease... and this is backed by the CDC/NIH?
That is contrary to IDSA stance. CDC links only to IDSA.
CDC speaks with "forked tongue"? Or does Pandora overlook the CDC stance? Or hope that people will not see the contradiction?
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
The above Pandora letter also states:
quote: However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease.
Future classifications? Is IDSA planning to change criteria again?
They could not find any evidence for this before. Perhaps this NEI will be a funding source for future futile attempts?
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Makes sense to me that they would use this center as an opportunity to classify Lyme, and other conditions, any way they choose, including as autoimmune conditions and therefore not deserving of treatment.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
thank you TC for the sample letter and set up for the emails
it is so hard for most of us to try and compose a simple sentence - this is very helpful
we all know the old addage "knowledge is Power" I nag my kids all the time with this
but when you are too sick, especially neurologically, to gain the knowlege- or to retain the knowledge - then power seems beyond your reach - and hopelessness can set in
power should not belong to only those who are healthy - and we cannot give up hope
do you think you can set up the letter in an additional post - with a title for those of us who are overwhelmed by the thought of trying to compose a simple letter with fear of getting it wrong
i plan to use your letter, and will explain why i needed to copy this letter to the senators -
are there laws that protect the handicapped from being neglected in this manner by their representatives...oh that is right - they would have to pass a law
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
posted
Thx for posting Ken Friedman's talk - I think it shows us what's on his mind and what we can be responding to.
And thx, TC, for all your help to everyone here!
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
North said...
"CDC speaks with "forked tongue"? Or does Pandora overlook the CDC stance? Or hope that people will not see the contradiction?"
Good points. This doesn't make sense to me either.
I wish they (PANDORA) would have mentioned this project to the Lyme community before they got in so deep.
For a handful of people (who I do believe have good intentions) to try to change the future of Lyme research and treatment by lumping us in with folks with disorders that have no known cause... well...
It's really unbelievable.
It is like me going to my legislators saying I want a Resolution that states heart patients are to fall under a new umbrella called "achy foot syndrome"...
Because some heart patients surely have had achy feet at some time or another.
And then too....
There is the CDC/NIH backing. What's with that?
Does this run THAT deep? Are they behind this?
It IS what they have wanted for us for a LONG time.. and to have the Sponsor and PANDORA to say they are involved...
Well, hmmmmmmm?????
If they knew anything about our struggles.. they wouldn't dare lump us with others in a place that we've been fighting for years on end... (Robert Wood Johnson)
A place that is responsible for so much of the Lyme suffering.
That is like the IDIOT who tried to make me relaxed by making a relaxation tape for me.. with me sitting there...
And he starts out his story of peace and calmness by saying..
"Imagine you are sitting in a field of tall grass by the woods edge."
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