Christopher Smith's Lyme Disease Bill 2557

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Henry
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Henry » Tue 20 Dec 2011 14:44

I neglected to mention that the NIH now spends more that $25M on basic research on Lyme disease. Furthermore, a Congressional mandate requires that it interact closely and regularly with ALL federal agencies doing work on Lyme disease. That's a whole lot of effort for a disease that is not life threatening and has an incidence of about 30,000 reported cases per year. The major problem is not that we don't have sufficient information about Lyme disease. Rather, it is the lack of trust, on the part of vocal activists, with respect to accepting the facts derived from excellent work done by outstanding research scientists and physicians. Compare their credentials and accomplishments to those of the LLMDs and "self-proclaimed" experts on Lyme disease and tell me who ought to be believed and trusted?

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Tue 20 Dec 2011 17:46

"Henry":
Legislation like this is redundant and a waste of money. Bills like this are proposed almost yearly -- and championed by the same Lyme disease activists groups--
Yes. And speaking of "not much substance'...this 'tick advisory' thing comes and goes annually like the change of the seasons...the leaves of the bill sprout...and then fall...and then sprout again when Congress reconvenes. Much ado about nothing, really.

And look what is happening here...this is NOT about a search for the TRUTH. The activists aren't raising funds for research...they're raising money to help protect doctors' continuing to do business in the way that they want to. $1,000,000 and counting, for instance, for a guy that they admit "cut some corners'. $1,000,000 that could have been used to HELP people. It appears that they even OPPOSE the current xenodiagnosis research on flimsy 'ethical' concerns. All about preserving the status quo.

This is about trying to pass legislation in the political arena to try to provide a substitute for a lack of scientific evidence. Can't do it in the lab...so they try to do it in a courtroom or in the legislature.

And the politicians get to say, "look at me...I got this for you (even though it means nothing)...vote for me. (Does the name 'Blumenthal" sound familiar to anyone? Smith, Wolf, whatever...).

And the self-styled 'Lyme activists': say, we got this done for you! Send us (MORE) money!

And the 'LLMD's? Send us patients.

And the money and the votes...it sort of looks like a business. And not a small one, either. Not a "cottage" industry, but a bigtime bucks enterprise with a paid 'CEO". And the hypocrisy...the charges of conflicts they hurl...is nauseating.

And look at the proposed legislation in Pennsylvania that wants to mandate insurance coverage? Now WHO does that ultimately benefit? Why the 'LLMD', of course...because at the rates they reportedly charge for their 'services'...a patient's bank account is pretty quickly depleted. Hell, somebody's got to pay...

And there was some sort of fund recently announced to help low-income patients pay for LLMD services...yeah...the other chumps can contribute so that the LLMDs get paid. Incredible.

And I wonder when some of the people online who constantly support this kind of C**P are ever going to wake up and realize how they are just assisting the use and abuse of other Lyme patients?

I got a bucket of tar and some feathers...

Margarita
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Margarita » Tue 20 Dec 2011 18:16

As far as I am concerned it's about me (and thousands of other Lymies) trying to get better and about finding doctors willing to help me/us. There is nothing wrong with helping people who are trying to help us. (at least that's what my mother taught me).

Spanky wrote:
And look what is happening here...this is NOT about a search for the TRUTH. The activists aren't raising funds for research...they're raising money to help protect doctors' continuing to do business in the way that they want to. $1,000,000 and counting, for instance, for a guy that they admit "cut some corners'. $1,000,000 that could have been used to HELP people. It appears that they even OPPOSE the current xenodiagnosis research on flimsy 'ethical' concerns. All about preserving the status quo.

RitaA
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by RitaA » Tue 20 Dec 2011 18:26

Note: This started off as a response to Henry's comments, but I see a couple of people have posted since then, so my comments might seem a bit odd in light of later posts.

The number of Lyme disease cases reported annually in the U.S. (or anywhere else) probably doesn't reflect the true number of people who are infected with Lyme disease:

http://www.cdc.gov/osels/ph_surveillanc ... urrent.htm
Lyme Disease (Borrelia burgdorferi)

2011 Case Definition

CSTE Position Statement Number: 10-ID-06

This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.

Clinical Description

A systemic, tick-borne disease with protean manifestations, including dermatologic, rheumatologic, neurologic, and cardiac abnormalities. The most common clinical marker for the disease is erythema migrans (EM), the initial skin lesion that occurs in 60%-80% of patients.

For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing. A single primary lesion must reach greater than or equal to 5 cm in size across its largest diameter. Secondary lesions also may occur. Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM. For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent. The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.

For purposes of surveillance, late manifestations include any of the following when an alternate explanation is not found:

Musculoskeletal system. Recurrent, brief attacks (weeks or months) of objective joint swelling in one or a few joints, sometimes followed by chronic arthritis in one or a few joints. Manifestations not considered as criteria for diagnosis include chronic progressive arthritis not preceded by brief attacks and chronic symmetrical polyarthritis. Additionally, arthralgia, myalgia, or fibromyalgia syndromes alone are not criteria for musculoskeletal involvement.

Nervous system. Any of the following, alone or in combination: lymphocytic meningitis; cranial neuritis, particularly facial palsy (may be bilateral); radiculoneuropathy; or, rarely, encephalomyelitis. Encephalomyelitis must be confirmed by demonstration of antibody production against Borrelia burgdorferi in the cerebrospinal fluid (CSF), evidenced by a higher titer of antibody in CSF than in serum. Headache, fatigue, paresthesia, or mildly stiff neck alone, are not criteria for neurologic involvement.

Cardiovascular system. Acute onset of high-grade (2nd-degree or 3rd-degree) atrioventricular conduction defects that resolve in days to weeks and are sometimes associated with myocarditis. Palpitations, bradycardia, bundle branch block, or myocarditis alone are not criteria for cardiovascular involvement.

Laboratory criteria for diagnosis

For the purposes of surveillance, the definition of a qualified laboratory assay is

1. Positive Culture for B. burgdorferi, or
2. Two-tier testing interpreted using established criteria [1], where:
a. Positive IgM is sufficient only when ≤30 days from symptom onset
b. Positive IgG is sufficient at any point during illness
3. Single-tier IgG immunoblot seropositivity using established criteria [1-4].
4. CSF antibody positive for B. burgdorferi by Enzyme Immunoassay (EIA) or Immunofluorescence Assay (IFA), when the titer is higher than it was in serum

Exposure

Exposure is defined as having been (less than or equal to 30 days before onset of EM) in wooded, brushy, or grassy areas (i.e., potential tick habitats) in a county in which Lyme disease is endemic. A history of tick bite is not required.

Disease endemic to county

A county in which Lyme disease is endemic is one in which at least two confirmed cases have been acquired in the county or in which established populations of a known tick vector are infected with B. burgdorferi.

Case classification

Confirmed: a) a case of EM with a known exposure (as defined above), or b) a case of EM with laboratory evidence of infection (as defined above) and without a known exposure or c) a case with at least one late manifestation that has laboratory evidence of infection.

Probable: any other case of physician-diagnosed Lyme disease that has laboratory evidence of infection (as defined above).

Suspected: a) a case of EM where there is no known exposure (as defined above) and no laboratory evidence of infection (as defined above), or b) a case with laboratory evidence of infection but no clinical information available (e.g. a laboratory report).

Comment

Lyme disease reports will not be considered cases if the medical provider specifically states this is not a case of Lyme disease, or the only symptom listed is "tick bite" or "insect bite."

References

Centers for Disease Control and Prevention. Recommendations for test performance and interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease. MMWR MMWR Morb Mortal Wkly Rep 1995; 44:590–1.
Dressler F, Whalen JA, Reinhardt BN, Steere AC. Western blotting in the serodiagnosis of Lyme disease. J Infect Dis 1993; 167:392–400.
Engstrom SM, Shoop E, Johnson RC. Immunoblot interpretation criteria for serodiagnosis of early Lyme disease. J Clin Microbiol 1995; 33:419–27.
Centers for Disease Control and Prevention. Notice to readers: caution regarding testing for Lyme disease. MMWR Morb Mortal Wkly Rep 2005; 54:125–6.

See also:
2008 Case Definition
1996 Case Definition
1995 Case Definition
One could argue that the U.S. National Institute of Allergy and Infectious Diseases Council already represents the perspective of patients with Lyme disease, however with only 6 lay members, it's difficult to know if Lyme disease patients in the U.S. feel sufficiently represented or not. I suspect they don't or this type of legislation probably wouldn't be introduced on such a regular basis. Unless I'm mistaken, the AIDS Research Advisory Committee was formed for similar reasons.

http://www.niaid.nih.gov/researchfundin ... uncil.aspx
NIAID's Council—Our Chief Advisory Committee

The National Advisory Allergy and Infectious Diseases Council (NAAIDC) embodies a diverse perspective on science, health, and the human impact of disease. Its 18 voting members include 12 health or science experts and six lay members. Members usually serve for four years.

Six nonvoting, ex officio members provide liaison with higher level agencies or organizations having missions consistent with that of NIAID, including the secretary, HHS, and representatives from the Department of Defense, Centers for Disease Control and Prevention, and Department of Veterans' Affairs.

Council's scientists contribute technical expertise and an understanding of the needs of the research communities of academia and industry. To supplement this knowledge in specialized fields, NIAID also invites ad hoc members. Lay Council members impart a perspective of people affected by diseases in NIAID's research mission.

Each Council member also belongs to one of the three Council subcommittees—AIDS, Microbiology and Infectious Diseases, and Allergy, Immunology, and Transplantation, corresponding to NIAID's extramural divisions.

Council breaks up into separate subcommittee meetings to do much of its work. Discussions of specific research areas often take place in the subcommittees.

What Council does

As required by law, chartered advisory committees, including the councils, are part of every NIH institute. NIAID's Council plays four key roles: performing second-level review, advising us on policy, reviewing programs, and developing and clearing concepts for PAs, RFAs, and RFPs.

Policy is usually discussed by the full Council. NIAID often seeks Council's advice before changing policies for training, health information dissemination, administration, budget, and other areas.

The subcommittees conduct most other business. During program reviews, the subcommittees advise us on a program's effectiveness in meeting Institute goals and the needs of the scientific fields it supports.

Second-level review

The second level of peer review is a core charge of Council. As part of the process, members perform an early, expedited review of applications that are within the payline and have no special issues that NIAID staff or Council need to resolve. Applications with concerns are reviewed by Council subcommittees in the closed session.

Expedited second-level review takes place electronically about eight weeks before a Council meeting. All Council members have access to the NIAID Electronic Council Book, which contains peer review results including summary statements. Three Council members, one from each of the three NAAIDC subcommittees, perform expedited peer review; the full Council ratifies the results at the Council meeting.

For the first two Councils—January or February and May or June -- expedited review enables NIAID to fund grants a few weeks after the initial peer review meeting. Because September Council reviews applications for funding in the next fiscal year, applicants approved for funding through expedited review will get their awards after the Institute receives its next year's appropriation.

What happens at Council meetings

Council meets in September, January or February, and May or June. Its activities are driven partly by the budget and appropriation cycle. For example, discussions in September reflect the beginning of the fiscal year.

In the morning, the subcommittees meet individually to review applications needing special consideration, discuss selective pay nominations, and recommend MERIT awards. Then, Dr. Fauci convenes the full Council. He presents scientific and administrative topics for discussion, often including staff or outside speakers. That session is followed by a short, closed meeting of the full Council to discuss and formally approve subcommittee recommendations for funding grants.

The afternoon is devoted to the subcommittee meetings, focusing on scientific and programmatic topics relevant to the divisions. The Division of AIDS has a unique structure in that its subcommittee meets in conjunction with another congressionally mandated body, the AIDS Research Advisory Committee.

Find the latest agenda on the Web.

Concept clearance

NIAID seeks Council's advice for long-term planning at an early stage. Council members and ad hoc advisors counsel the Institute on broad research priorities and directions, providing the perspective of the outside community.

After a decision is made to go forward with an initiative, the Council subcommittee reviews it again for budget and mechanism, e.g., grant or contract, and grant type.

Minutes from Council meetings are also online.
The National Institutes of Health (NIH) and the Institute of Medicine (IOM) are no doubt doing their best to address the concerns of physicians, researchers and Lyme disease patients. While there may be no shortage of effort or money being spent, I get the impression that very specific areas of research are not currently being funded and therefore conducted, however I could be mistaken about this.

http://iom.edu/Reports/2011/Critical-Ne ... eases.aspx
A single tick bite can have debilitating consequences. Lyme disease is the most common disease carried by ticks in the United States, and the number of those afflicted is growing steadily—from 10,000 reported cases in 1992 to 30,000 in 2009. If caught early, Lyme and other diseases spread by ticks—known as tick-borne diseases—usually cause only mild symptoms and can be treated easily; however, if left untreated, these diseases can cause severe pain, fatigue, neurological problems, and other serious health problems.

At the request of the National Institutes of Health, the IOM held a workshop October 11-12, 2010, to examine the state of the science in Lyme disease and other tick-borne diseases. Speakers discussed current research and knowledge gaps; criteria for diagnosing tick-borne diseases; the groups most vulnerable to acquiring tick-borne diseases; and the experiences of those with tick-borne diseases. This document summarizes the workshop.
When comparing Lyme disease alone to other potentially life-threatening infections from a global perspective, it may not seem like a very high priority. Maybe the focus on Lyme disease alone isn't justified when considering only the number of published cases, however the growing threat of tick-borne illnesses in general does need to be taken seriously. The ticks that carry Lyme disease are also capable of infecting people with Babesiosis and possibly other infections that could threaten the safety of the blood supply in North America and elsewhere. Since there are people with potentially life-threatening conditions who do rely on the safety of blood products to stay well, and sometimes even alive, this alone justifies money spent on research, education and prevention of all tick-borne illnesses.

Henry, I'm not trying to defend or attack anyone or anything, and I'm not sure that legislation is the best way to address the perceived need for changes, but more than a few people obviously do. These are just a few of my thoughts, and I think it's generally a good idea to look at issues from as many points of view as possible in order to truly understand them.

Rita A

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Tue 20 Dec 2011 18:37

"Margarita":
There is nothing wrong with helping people who are trying to help us. (at least that's what my mother taught me).
Well, yeah, if they are really trying to help YOU, and not themselves...(and that's what Spanky's Mom taught him).

I have heard it said, that the problem with common sense is that it just isn't common enough.
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Edited to add: But as to the specifics of the Jones thing...that has been covered extensively elsewhere here. Insurance riders are ususally attached to malpractice policies that cover disciplinary hearings before medical review boards. The question I have is: could that matter have been settled EASILY under terms that would have allowed Jones to continue to practice as he is NOW? I suspect so...but see, you can't even get answers to these type of questions...).

Those of you that want to continue to write checks so that you can feel all huggy-huggy like you are doing good...look in the mirror and see if you can see the word 'chump' on your forehead.
Last edited by Spanky on Tue 20 Dec 2011 19:23, edited 2 times in total.

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Tue 20 Dec 2011 18:40

"RitaA
I'm not trying to defend or attack anyone or anything, and I'm not sure that legislation is the best way to address the perceived need for changes, but more than a few people obviously do.

Well, okay...but what I am saying is that they couldn't be more wrong. (What? 20 million Frenchmen can't be wrong? That's a classic fallacy, as I'm sure you're aware).

And what we are talking about...is a matter of scientific evidence.

Now...my suggestion (bizarre as this may sound)...is that we resolve that in the lab and NOT the legislature.

RitaA
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by RitaA » Tue 20 Dec 2011 19:01

Spanky wrote:"RitaA

And what we are talking about...is a matter of scientific evidence.

Now...my suggestion (bizarre as this may sound)...is that we resolve that in the lab and NOT the legislature.
Spanky,

I completely agree that science needs to be conducted in a lab. I don't believe I was suggesting otherwise.

Rita A

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Tue 20 Dec 2011 19:22

"RitaA":
I completely agree that science needs to be conducted in a lab. I don't believe I was suggesting otherwise.

Well, what I HEAR is some people suggesting that a scientific issue (notice that I do not use the word 'controversy')...

...be addressed in the legislature.

And I thought that I heard you more or less lending support to (although what you say is so ambiguous, that I'm not sure) ... that notion by saying that:
I'm not sure that legislation is the best way to address the perceived need for changes, but more than a few people obviously do.
So?

You're 'not sure'...but some people think it might be a good idea?

Well, I am trying to say to those that think it's a good idea...that they're really, really WRONG.

RitaA
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by RitaA » Tue 20 Dec 2011 19:56

Hi again, Spanky,

Just to be clear, I don't believe science can be legislated, and therefore the "scientific issues" are unlikely to be resolved through any type of legislation. There's more than science involved here, however.

If people in the HIV/AIDS community felt that all of their personal concerns were being adequately addressed through science alone, I'm willing to bet that an advisory committee would not have been necessary. I have no idea how successful that advisory committee has been in meeting its goals, which accounts for some of my uncertainty.

Education of medical professionals and the general public is high on my list of personal priorities when it comes to tick-borne illnesses because that would have made a huge difference in my life and that of several family members who live in the U.S. I'm all for eduation, and especially if it leads to prevention and early detection/treatment of tick-borne illnesses, but perhaps even that doesn't require an advisory committee. I simply don't know at this point.

I hope I've clarified my position somewhat. I don't pretend to have all the answers -- never mind know all the questions. Keep in mind that I'm still learning, and actually know very little of the history when it comes to Lyme disease. I realize that others like yourself do, and therefore have much more informed opinions. What I am trying to do is learn and understand how and why things have happened in the past, and how things might be improved for those who follow in our footsteps (or wheelchairs).

Rita A

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Tue 20 Dec 2011 20:18

"RitaA":
Just to be clear, I don't believe science can be legislated...
Yes, well, I am under the distinct impression that "some people' do think that.
There's more than science involved here, however.
Like? What, for instance? See, basically, everything, (so far as I can see, anyway) flows from the underlying science. Yes, there certainly are a lot of consequences that derive, flow, from that...but the basic science drives everything else...and, in particular, perceptions.
If people in the HIV/AIDS community felt that all of their personal concerns were being adequately addressed through science alone, I'm willing to bet that an advisory committee would not have been necessary. I have no idea how successful that advisory committee has been in meeting its goals, which accounts for some of my uncertainty.
We're not talking about HIV/AIDS, here. The attempted analogies to that situation, are, in my opinion, entirely misplaced. I wish 'some people' would give that one a well-deserved rest.
"...but perhaps even that doesn't require an advisory committee. I simply don't know at this point".
Well, thanks for that, anyway. (?) :?

But think about this...as 'RR' pointed out on his blogsite, recently...the main activists in this deal are now so completely entrenched with the ILADS crowd that they probably (and little doubt to my mind, do) have conflicts of interest that wouldn't allow them to serve on such a committe, anyway.

And what? Just from a viewpoint of governmental efficiency...oh, 'let's form a committee, boys and girls'? I mean, COME ON...it's a laughable CLICHE. What? No 'taskforce'? You just gotta have a 'taskforce'...

How about sub-committees, too? 'Blue-ribbon panels'? Why the hell not?

This is total HORSE(BLEEP).

And what I am saying is that it is part of a pattern. A pattern where Lyme patients are being led to believe that something is being done...when it is NOT.

A pattern where we take a scientific issue to totally inappropriate forums.

So...send us some more money. As usual.

Like I said, I wonder when and if some are ever going to figure it out...

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