Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
One day my grandpa got me a ticket to go to a local pre-teen dance.
The LAST thing this 11 year old Tom-boy wanted to do was be around BOYS - UGGGG ... and be made to wear a dress and shoes... UGGGG ... and being made to dance with toad-headed boys ... UGGGG!!
When I tried to object, his response (a stern, direct order) was...
"You WILL go and you WILL have a good time whether you want to or not!"
The NEI Center situation reminded me of that story.
I was asked to put together some information (facts and opinions) about the proposed center from my research and experience. I am sorry this is so scattered and not in the format of an article or letter. And it is longer than the line at the return counter after the holidays....
But I knew you all wanted details, so please excuse the way it is presented below.
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One problem I see- This has been a "we are going to save you by joining together with other autoimmune disorders" campaign with no substance and which also sets a dangerous precedence.
It was done under the cover of darkness... which is NOT the way to go about it when you supposedly have a good plan.
From the few proponents of this center I would like to see less jumping for joy and cheer leading about having our disease on what I consider to be a dangerous list of autoimmune disorders ...
And more hard facts, other than what I've had to dig up on my own, and some substance in the few replies we do receive when the issue is brought up.
I would also like to see the questions answered that are still floating around here and elsewhere. So far those who have tried to ask questions or had objections to the center proposal have been called names, told we were liars, back stabbers, etc.
This stupid name calling stuff and the false accusations being spread by those in support of the center really has to stop. We are working on an idea... and should not be engaging in a slaughter feast.
From what I understand, the center was originally proposed by a handful of CFS patient advocates (no medical doctors or scientists) with Lyme disease being added to the mix as an afterthought.
The Resolution in question managed to pass through the NJ House of Legislators before all but a few Lyme patients, doctors and organizations across the country accidently learned about it.
Since our future is at stake and we have a lot invested, a number of us researched the proposed center in great depth, as well as the players involved and the positive and negative sides of the proposal.
From what I've gathered...
The Center was originally slated to be in Florida, but those plans fell through so the effort was moved to NJ and spear-headed by Mr. Kenneth Friedman, PhD, the father of a CFS patient and an employee of UMDNJ.
This is one of several similar centers planned by the same people who just spent eleven years trying to get a new name recognized for CFS and who now believe a virus is responsible for CFS (according to one study from one Institute). The center will be designed similar to the Institute doing the virus study.
My research into this center was not focused solely on the medical aspects of adding Lyme to the list of autoimmune (NEI) disorders, because as we all know some symptoms do overlap and that is a no-brainer.
However, the medical component is very important to consider when reviewing the political, financial and common sense angles, as well as the bottom line for our doctors and patients.
Note- Mr. Friedman called this proposed center a Center for Excellence in his promotional slide show, 'The positive side of Lyme'.
Note slides 13 thru 39- they indicate Lyme has a lot going for it (politically and financially). It also indicates CFS, GWS, Fibro, etc don't have a lot going for them.
It appears they are saying let's put Lyme on our agenda so we can benefit from what they have.
Quote from Mr. Friedman about the CFS situation- "In the past, the NIH supported CFS centers which built human resources, institutional capacity and provided a conducive environment for CFS research. Funding for these centers has been withdrawn." From- Background Information for The CFSAC Research Recommendations ``Fish or War?'' Kenneth J. Friedman, Ph.D. June 16, 2004
Note slide 44- This outlines Mr. Friedman's plan to establish both "state-supported" and "federally-supported" Centers for Excellence. When the state or federal government is involved, keep in mind it is their way or the highway.
Another big problem here is the information coming from NEI Center advocates. It is either totally lacking, confusing or in some cases, simply not true.
For example- the NIH and CDC Lyme administrators were not even aware of the proposed center nor it's mission as we and also the NJ Legislators were told (see quote below) in an open letter to the community.
"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."
Another point of contention- the original Resolution didn't clearly recognize the fact that Lyme was, unlike the other disorders, a disease with a KNOWN origin.
A face lift has been suggested for the Resolution but only after the objections started pouring in from Lyme patients and organizations across the country. It is too late to change the Resolution that passed in the NJ House.
And rather than respect the wishes of the Lyme community and pursue the NEI center without Lyme disease being swept up in the new NEI umbrella (and that was the objection to the Resolution, there was not an objection to the center itself) ...
Instead, advocates tried to persuade a couple doctors to climb on board rather than just removing those two little words "Lyme disease".
To me, it seems unfair to put our doctors on the spot like that, especially after hundreds, if not thousands in our community have voiced their objections to this proposal.
As for putting all the autoimmune disorders together under the same umbrella...
The Lyme Community doesn't need to move backward at this point or compromise what we have already accomplished by our research and treatment protocols being linked at the hip with autoimmune or NEI conditions.
We already have enough problems with the IDSA, as well as the CDC/NIH/Yale/Hopkins, etc, trying to get adequate medications for treating the source of our ongoing infections.
If we all want to share research with other doctors and scientists (which is a fantastic), we can simply keep reading the results of studies like we have been, attending conferences, sharing opinions, communicating and working together.
We really don't need to be in bed together and/or be mixed up in any messes the CFS community has been involved in over the years (loss of funding, loss of standings, etc) with the CDC/NIH and other government agencies.
Likewise, they don't need the many problems the Lyme disease community has encountered (IDSA, failed vaccines, bad tests, poor reporting practices, etc).
I am quite sure, actually very positive, our LLMD's are capable of reading and incorporating independent research findings relating to their patients illnesses into their own practices and guidelines, if they so chose.
However, having an unfriendly government associated/controlled/funded Center makes an even stronger case for treatment of Lyme to be regulated by the CDC or NIH and/or state run health departments, exactly what we don't want!
Some mentioned autism be added to the NEI list of disorders and be a focus of the center.
Autism may be an NEI related entity (?), but it wasn't and still isn't mentioned in the NJ Resolution as a NEI disorder in the communications.
Now... Before CFS advocates try to lump autism research and treatment of autism patients in with this center, is anyone planning on informing the hundreds of autism organizations, their doctors and their board members that patients they have been treating are getting ready to unknowingly be blanketed with a new label (NEI) which could have long reaching effects that can't even be fathomed by a handful of CFS advocates at this point in time?
Do the autism advocates know they may be approached to share their precious funding or donate privately to a new cause that could dilute their own ongoing research?
See the problem with that approach? It is exactly what was done to the Lyme community.
Forcing Lyme disease and our patients to be included in a center with MUS (multiple unexplained symptoms), autoimmune or 'whatever you want to call them' disorders, benefits the IDSA's agenda, not our own. Period.
As a CFS advocate in favor of this center, why not be satisfied with removing "Lyme disease" wording from the Resolution and letting it be one of the many unnamed "environmental illnesses" if it MUST be in the centers plans at all?
Why is there such a huge focus and insistence on adding Lyme to the MUS/autoimmune list, especially after the Lyme community made such a strong stand against it and is still going strong against it?
The CFS folks need to ask themselves if they want a Center to help themselves or not? If they do, they need to take care of their own situation before trying to take over others. They also need to have a good track record to encourage others to jump in their boat.
Attempting to get a single disorder (CFS) clinic is difficult enough; piling a bunch of multiple disorders together would be a logistical nightmare- politically, financially and medically.
It appears the CFS advocates already have their hands full with CFS problems and have great difficulty moving themselves forward on their own. Bless their hearts- I KNOW how hard it is to do what they are trying to do. BUT...
Do we, with all the problems already existing in the Lyme community (compliments of the IDSA) need to be part of their baggage?
Who benefits from that?
What is making them want to stay stuck like glue to us in this fashion, to both our detriments? Sorry to say, this feels creepy to me ... or as if something is going on we don't know about.
``````````````````````````````````````````````````` Point for the center- NEI conditions and Lyme disease share some common pathophysiological processes.
We do share common symptoms with many disorders of unknown origin, but who will benefit in the end by diluting the research funding or the focused ongoing research we currently have by making the funding and the focus thinner than it already is?
If CFS advocates can't get their own funding for whatever reason, or make political advances on their own, they really need to keep trying like we are doing and not be looking in our pant's pocket for spare change or at our coat tails for a free ride.
They need to focus and concentrate their own efforts on CFS rather than diversify and dilute their mission by dragging us kicking and screaming into this mess.
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Point for the center- The mission is to create a center to allow a cooperative effort to advance patient care for multi-system illnesses.
Since the proposed center is apparently being "state-run" and/or "federally funded", according to Mr. Friedman presentation, the research and treatment protocols will be governed and/or controlled by reps from agencies within the CDC/NIH and/or the state health departments.
Sorry, but those are the facts. If you get state or federal monies, you must play by their rules.
If Mr. Friedman's information is incorrect and this is privately funded, we need to know where is the money coming from, where is it going and before we support it, who will be making those decisions on our behalf?
After checking it was learned that the CDC/NIH and UMDNJ claims to have no plans (even prior knowledge) for such a center, as we were told.
In fact, Mr. Friedman admitted he was already called on the carpet by his employers (UMDNJ) for his involvement in this situation.
In addition, UMDNJ does not support the Resolution or the center, so before we support this plan... what is the deal here?
If it is not going to be located at UMDNJ, which it obviously won't be now, where is the center to be located and why is that not being shared with those it will be affecting?
`````````````````````````````````````````````````` Point for the center- It has a goal of providing new treatment programs for those suffering from chronic illnesses.
If we allow government entities to have even more control over the research, the funding, the way patients are treated and the way doctors are forced to comply, is that a good thing?
Isn't that exactly what we've been fighting to get away from for so many years?
`````````````````````````````````````````````````` Point for the center- Funding would not compete with currently available funding sources for Lyme disease.
First of all, it is a given that the NEI center could not get their hands on monies previously alloted for Lyme for a center that doesn't currently exist.
But... what about the NIH Centers fo Excellence monies, stimulus money (federal/state) and the anticipated $100 million extra that may come to the Lyme community by way of the Congressional bill (if someone out there doesn't stop sucking up and making deals with Pallone and we lose that funding too?)
And is this to say they will not be approaching our legislators (state or federal) for any disease funding in the future?
We already have Columbia working on Lyme research and another new Lyme Research Foundation established in Maryland, as well as other independent researchers who are working on our behalf in a number of states and who are being funded partially by LDA and other organizations funds, not to mention our LLMD's own work which is the most important.
We could always use more funding and research ... true... but do we want future funding to go to a center where Lyme and all the other disorders are taking a back seat to CFS and are potentially being diluted with countless other syndromes?
BTW- there is a newly established Autoimmune Center located at Johns Hopkins that will coordinate multiple studies, do the research on the NEI disorders and treat patients.
Their study results would take a high horse over what other centers might find because they were, after all, voted the number one facility for 19 years running. UGGG!!! They state...
"Historically, research on autoimmune diseases has gone on in different departments, because these diseases (there are at least eighty of them) can affect any organ in the body."
Interesting to note- Hopkins use to have a list of autoimmune disorders with about 60 or so listed of the 80 they claim to be out there. Lyme was not, at the time, one of them.
Now the list appears to have been removed and you can not access it unless you are at Hopkins.
Since there are at least 80 disorders on the list (according to Hopkins), how many more supposed NEI disorders will this proposed NJ center take on- where is the line drawn?
Surely someone has given this some thought, has made up goals for this center with substance, knows these answers and can share them with all of us.
Otherwise this just sounds like a "cool idea" on the surface, when in fact it can be taking us all down another rocky road we don't want to travel.
`````````````````````````````````````````````````` Some may remember??
I worked on planning and developing a Center of Excellence for the Lyme community and had the plans down pat enough to be able to say what color the carpet would be in the entrance way. Many of you offered your thoughts and help with this plan.
There was to be a research facility with additional emphasis on physician education ... then treatment would have been offered for patients.
It was offered to us by politicians one day, out of the blue, when I was voicing concerns that we don't need to know how to pull our socks up over our pants legs 20 years after the fact, we need doctors who know how to PROPERLY treat Lyme and coinfections.
After nearly two years of researching and developing plans for this proposed center and carefully studying the underlying benefits and any negative effects it would have on our community, I had to say "no thanks" and let it go.
It broke my heart, but it would have been a HUGE problem for patients and doctors had we moved forward.
There are many reasons why we had to walk away, but the main point to consider is if a center has ANY state funding or federal funding the CDC/NIH and state agencies would have, no way around it- believe me I tried- the final word on how it was run, what was taught to physicians and the protocols used, etc.
If something doesn't meet with their approval, it doesn't happen.
In a day and age where the IDSA still has some (floundering but some) connections, this is not good.
Had this plan to gone forward, we would have done nothing more than unintentionally created another IDSA/Hopkins/Yale like-minded Lyme facility that would have supported and made stronger the wrong standard of care, would have added to the flawed research out there, would have focused on vaccines and prevention efforts rather than patient care, would have sucked up even more available research funding and it would have been a dangerous situation to put our doctors and patients in.
You all made your voices heard. Thank you for speaking up and sharing your opinions. You were heard!
Last Thursday the NJ Senate Health Committee removed the Resolution from today's (Monday) hearing schedule.
I will update this post with any news as it becomes available.
I offer a personal thanks to you all for taking actions that help me and my family with our Lyme situation. In the process you have helped yourself and many others.
posted
We have been trying to get a lyme bill thru congress for at least a decade, and there was a suggestion that it might be added to another larger funding bill this year. That apparently did not happen. So, would this new center for autoimmune diseases be a way to get some more funding for lyme in the meantime? That may be what the proponents are thinking; they are so desperate for lyme funding that they will accept these conditions.
What it really looks like is a way to set up a center that could then be the focus for a grant from the NIH, as a center of excellence. And as we know, autoimmunity is a popular explanation for all kinds of conditions.
I have never been convinced that autoimmunity very often exists in the absence of infection.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Anyone have an update as to whether or not the state senate voted on SR 133?
When I first read about this at one of the Yahoo Lyme groups I contacted my state senator, as well as the two co-sponsors of the bill. I never heard back from Sen. Loretta Weinberg's people but I suspect that had to do with the fact she and her staff were busy campaigning as she was Governor Corzine's running mate at the time.
After I contacted the other bill co-sponsor, I can't recall the senator's name at the moment, his office emailed me that PANDORA press release webpage and I sent corrections back telling him where and how PANDORA was wrong in what they wrote, complete with URLs of correct information about what Lyme disease really is. But I didn't receive a second reply.
IMO, these PANDORA people just want to suck us dry, they just want our money, and we are a state that is already hurting financially. Here in NJ, we have the highest property tax rates in the US as it is and our state is seriously in debt; and this out-of-state interloper organization wants to get their hands on our scanty healthcare research money for their bogus research projects.
New Jersey has enough problems as it is, including with our healthcare system and lack of access to enough decent specialists and quality medical care.
I heard this center was supposed to be built in Newark and headed up by Dr. Lesley Ann Fein (a bit of a shock, actually).
The NEI over-lapping symptoms "excuse" is a joke. Lyme disease, and the NEI autoimmune disorders also have symptoms in common with viral infections (including HIV/AIDS), other bacterial infections and various other kinds of illnesses and diseases, including cancer. To lump various conditions of completely different origins together just because they have some symptoms in common is absurd.
As we all know, Lyme is bacterial in origin. CFS is likely a XMRV retroviral disease. Gulf War Illness has to do with soldiers being exposed to specific harmful pathogens when they were deployed. Multiple chemical sensitivity is probably an autoimmune disorder/extreme allergy condition. Fibromyalgia is a faddish catch-all/wastebasket diagnosis. Fibromylagia was originally created and still serves as a psychosomatic stress related/mental illness disorder of low-income women who grew up in abusive households and were physically and/or sexually abused as kids. In a nutsell, the FMS diagnosis was and still is a psychosomatic illness of women who were child molestation victims. Scuttlebutt on the web says FMS may very well be listed in the newly released DSM-V next year as a mental disorder. It's currently transformed into a faddish and nebulous 'overactive never disorder' diagnosis which is making a ton of money for the Big Pharma companies who make and sell Cymbalta and Lyrica. But Fibro's bad baggage is not what Lyme Disease sufferers need to be saddled with.
Hilary
Posts: 4 | From New Jersey | Registered: Jan 2010
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posted
Welcome to Lymenet, Hilary, and thanks for expressing your interest and comments -
Re your fibro comments, I'd like to tell you that my "dx" of fibro for 25 years following a known tick bite turned out to be Lyme disease.
I think what makes it easier for me is I saw the tick and I can date all symptom development. It took 18 months for fibro to go full-blown.
I don't know about ALL fibro being Lyme, but I do know that some of it is. I contacted as many people as I could find from the old fibro days. The ones I could find knew by then they had Lyme/coinfections, and I got one fibro woman diagnosed with Lyme.
Posts: 13117 | From San Francisco | Registered: May 2006
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I'd been there and done that with the fibro dx at one point. With me, I first became ill in the fall of '93 and had nasty cardiac symptoms in addition to the muscle and joint pain and stiffness, and constant fatigue. I was hospitalized three times, the first time I spent two days in ICU. I also wound up in the ER too many times with very rapid heart rates, chest pain and arrhythmias. I have LD caused mitral valve prolapse. My heart is sensitive to caffeine and certain types of medications- some pain meds, muscle relaxants.. The only thing the helped and ultimately broke the cycle of chest pain/off kilter heart rates and rhythms was sublingual nitroglycerin.
One cardiologist I went to had a western blot done (in the spring of '94) which came back positive but neither he nor any other doctor I went to afterward wanted to touch the Lyme dx with a ten foot pole. There was one doctor I saw a few years later who wanted to run a handful of tests, but since I don't have insurance I couldn't afford them, as this was at the same time when our then-Governor Christie Whitman completely gutted the budget for the NJ Hospital Uninsured Program.
I had to undergo surgery in 2002 for a serious condition completely unrelated to the Lyme and went through the University medical center's clinic system. One medical resident there very casually dx-ed me with fibro just because my thyroid blood tests came back normal. She didn't even bother to do the trigger point test. I don't have the fibro trigger points, so I always 'fail' that test. My pain trigger spots are joint and lymph node related. The docs at the university hospital were very aware of my lyme history, but wouldn't touch it with a ten foot pole either.
The bad info I had heard was that fibro and CFS were illnesses that Lyme disease morphed into and they were autoimmune disorders which would get somewhat better on their own with time. I was advised to take up yoga for the fibro by one of the clinic doctors.
I have two internet service providers. One of my ISPs has its own firewalled discussion groups and a few years back several groups were created for people dx-ed with fibro. One group owner, like me, was dx-ed with fibro because she had lyme and had lyme caused heart problems, including LD-MVP. But none of the other groups' members, all women, had a lyme history. They were completely unfamiliar with lyme. The groups I posted in were places where people focused on researching fibromyalgia related online resources and posted links and findings. Some of the stuff I found was rather troubling, such as linking fibro to childhood sexual abuse. Out of curiosity, a few group members spent time researching lyme disease, but soon became uncomfortable with the concept of a lyme-fibro connection, and fibro really being a misdiagnosis for lyme disease. They were also aware of Dr. Daniel Dantinti's research and book which pointed to some FMS and CFS patients really having chronic viral infections and food allergies (like gluten sensitivity/celiac disease) which needed to be treated with antivirals and dietary changes. From what I've read, some fibro patients are told by their doctors not to second-guess their FM dx and not to pursue potential causes or alternative diagnoses. And these women I posted with ultimately 'stayed in their place' regarding their fibro diagnoses. The other group members brushed aside the troubling aspects of the 'fibro mythos' but I began researching this in earnest and I eventually distanced myself on the others.
Fibro is such a fad diagnoses that a number of women in our other discussion groups which are completely unrelated to health issues have disclosed that they and/or female relatives have been dx-ed with fibro within the past five years or so. The number of participants in our firewalled groups is rather small- maybe between one to two thousand people, yet the prevalence of the fibro diagnosis among female posters over age 40 is startling, and very troubling. Only one man has been dx-ed with fibro.
For me the major turning point with the fibro dx came when Constance Bean's "Beating Lyme" was published and I came across it at the bookstore while researching the fibro patient books. It was an eye opener and explained to me why I was (and still am) treated like crap by the medical establishment because of my lyme history/lyme caused health problems. Then Pam Weintraub's book came out... From then on, I refused to accept the fibromyalgia diagnostic label and simply let everyone know I have untreated chronic lyme disease.
My fibro research lead to the creation of my "Beware the fibromyalgia diagnosis" series on my chronic illness and disability blog, which I update on a rather irregular basis: http://juncohyemalis.tripod.com/blog
I'm actually slowly working on an e-book which deals with the methods behind fibromyalgia being made a psychosmatic illness of child abuse victims. It's very warped stuff which is tied into the biopsychosocial medical model of illness causality, which basically blames chronic illness and disease found in adults in their prime on psychological causes/mental illness, domestic violence, sexual abuse/assault, and stress. The patients used in these medical studies tend to be clinic patients from disadvantaged backgrounds and unsafe neighborhoods and communities- i.e. the urban poor.
Hilary
Posts: 4 | From New Jersey | Registered: Jan 2010
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One thing - if you could do folks with neuroLyme a favor and break up the text into two and three sentences at a time for easier reading - thx-
I'll study your blog entry more fully later - from my first perusal of it, it reminds me of everything I went through, hearing every reason under the sun as to why we weren't well.
That can happen first of all because no one really had any info as to why we're doing poorly, so they tried to think of plausible reasons. No proof, tho, and that's where it fails to be truely diagnostic.
Second reason - they're making a lot of money from what they do, and they're selling their work this way.
Third reason - people are desperate to know what ails them, and many accept easy answers. Medical people must know, right? This reason takes advantage of people's trust and ignorance.
Fourth reason - to throw anything out there and see what sticks. They tried all this with me, but I don't come from an abusive background and always smelled a rat, but didn't know what.
There's a lot of fibro sites out there, if you want to help with any of the educating re a possible missed Lyme diagnosis plus sometimes some coinfections.
One more thing - you said you figured it out from seeing a book on Lyme at the bookstore. This says a lot for us getting Lyme books into bookstores where people can browse them.
When I flunked surgery, I went to the bookstore and found one book on low thyroid and one on candida, both of which seemed to explain my symptoms. So there I was off and running with two more guesses.
I suggest this as part of our activism - to ask bookstores to carry a few good Lyme books in the health section for the general public. There are certainly lots of books on other health conditions and we have a right to be browsed about too!
Posts: 13117 | From San Francisco | Registered: May 2006
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
A new paper 'Inflammation and central nervous system Lyme disease' has just been published in the journal Neurobiology of Disease authored by Dr. Brian Fallon, Director of the Columbia Lyme and Tick-Borne Diseases Research Center, Dr. David Hardesty, Lyme Center Neurologist. and fellows Elizabeth Levin and Pernilla Schweitzer.
Neurologic manifestations of Lyme disease occur in 10-15% of individuals with untreated Lyme. This paper discusses the symptoms of neurologic Lyme and reviews experimental studies that provide insight into the possible mechanisms of inflammation following Borrelia infection and contributing risk factors.
A fascinating and potentially very important study has recently come out in the journal Science. The study reports on the discovery that 68% of patients with Chronic Fatigue Syndrome (CFS) carry the XMRV virus as compared to 3.7% of those without CFS. Further work reported in the New York Times indicates that the virus has been found in 98% of patients with CFS. The discovery of this retrovirus, if confirmed by other research groups, suggests that this virus is either the cause or an important secondary factor in CFS.
This finding has implications for Lyme research as it is possible that patients who carry this virus when co-infected with Lyme go on to have persistent symptoms because: a) of activation of the latent virus; b) infection with Lyme or another tick-borne disease lowers the immune surveillance making the individual more susceptible to "catch" the virus; or c) the presence of the virus and the spirochete together act synergistically to induce an array of illness symptoms or to prevent eradication or control of either organism.
In any case, given that the symptoms of CFS are so similar to the symptoms of patients with chronic persistent Lyme symptoms, especially shared problems with fatigue and cognition, research in this area may shed important light on the mechanisms underlying the perpetuation of chronic symptoms.
In terms of treatment, if this virus is thought to be causal, then retroviral treatments that are used for treating HIV may be very helpful for patients with chronic persistent symptoms.
The featured news section found in the web site of the Lyme and Tick-Borne Diseases Research Center at the Columbia University Medical Center article adds, confirms and enhances the efforts of P.A.N.D.O.R.A. and the Lanford Foundation that the establishment of the NEI Center in New Jersey is the RIGHT THING TO DO. ...
"The cornerstone of the NEI Center is that discoveries and advances made in any one of the neuroendocrineimmune illnesses: chronic fatigue syndrome (CFS), myalgic encephalomyelitis or encephalopathy (ME), fibromyalgia (FM), Gulf War syndrome/illness (GWS/GWI), multiple chemical sensitivity (MCS), environmental illness (EI), chronic or persistent Lyme disease (CLD-PLD), Alzheimer's Disease (AD), and autism, will be applicable and beneficial to other neuroendocrineimmune illnesses, thereby bringing us closer to a cure."
Sandi Lanford, Founder/President The Lanford Foundation - Lifelyme, Inc. Tallahassee, FL www.lifelyme.orgPosts: 1009 | From NJ | Registered: Aug 2009
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