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» LymeNet Flash » Questions and Discussion » General Support » Why support Kelly bill?

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Author Topic: Why support Kelly bill?
Ruthanne
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I don't understand why anyone with chronic Lyme would support or lobby for the Kelly bill. The ALERT Act (HR 2877) sponsored by Rep. Smith provides for twice as much money for research and provides research for treating chronic Lyme. The Kelly bill provides no money for researching chronic Lyme. Both bills set up an advisory committee, but only the Smith bill requires that doctors treating chronic Lyme be included on the committee. ILADS doctors and 79 patient support groups are supporting the Smith bill. There are a few groups supporting the Kelly bill. Why would anyone with chronic Lyme support the Kelly bill? It doesn't make sense to me. I hope that those who plan to go to Lobby Day think twice about it.
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OptiMisTick
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[ 09. March 2006, 02:36 PM: Message edited by: OptiMisTick ]

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lou
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When this legislation first hit the boards, I supported it, assuming that lyme orgs had finally decided to work together. Then a second bill appeared, and it was clear I was too optimistick.

Having read both, I now feel that anything not tied up so Steerites can't co-opt this research too, well, just not to be thought of, that they would again use our efforts to hurt us. So, if the Smith bill does more to prevent this, that is where my support goes. Guess I will have to write to my rep in Congress again. Sorry, sir, changed my mind, will you please co-sponsor the Smith bill instead?

If you see what the Steerites have done in the past to destroy all efforts to find the truth about lyme, then you will know that we must take all the precautions we can to try to stop them. Not sure it will be enough, since they have the NIH and CDC in their corner, but we have to try! There really is no alternative for people with chronic diseases. We must keep trying to force officialdom to recognize and adequately deal with lyme and its friends.

Wouldn't it be great if all the lyme orgs could work together, so we had a united front? PLEASE.

[This message has been edited by lou (edited 22 June 2005).]


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Linda LD
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Amen lou,

This is CRAZY? Why can't we all get along? We all want the same things--this is just--amazing. After being told by some big dog Lyme people to support Kelly I did--but now I think Smith is the way to go--sounds better--and the better track record of getting bills passed is huge.

Why all the hard feelings between the groups? Talk of Lyme groups lobbing against Lyme groups in the past What gives?

I'm new to this and really don't understand...but I don't want my children to still be fighting this battle when they are grown...

Linda


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lou
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Linda, I have the impression that the backers of the Kelly bill think Smith bill is not realistic, has no chance to pass because it is more expensive and puts some limits on what the NIH and CDC could do to subvert the intent of the legislation. Those federal agencies will say they know better what patients need, and don't want any interference.

But if there isn't any guidance from lyme orgs/patients, as appears to be the case with Kelly bill, then there is no question it will be subverted. This is what has been done consistently in the past, and when that wasn't enough, outright lying and deliberate skewing of research results happened. I'm sorry, there is no way I can any longer trust that those people will be honest and operate in good faith.

That is why Smith looks better to me. I am still worried, because the people who are responsible for our current plight are still up to the same old tricks.

[This message has been edited by lou (edited 22 June 2005).]


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LHalins
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The extra guidance for the advisory committee member selection in the original LIFT Act S. 969 was taken out during the committee process in 2002 resulting in the language in the Senate passed bill, now introduced as HR 2526. We fought hard during that process and the advisory committee in HR 2526 is very good for patients. It is absolutely a matter of being realistic and passing a bill. If language of LIFT was taken out during the committee process, then it would likely happen for any other bill that went through. That is why HR 2526 is excellent. It is a good bill to get something done to help patients.

I also really do not understand why people who support the Smith bill have launched a vicious campaign of smear and hate against HR 2526, Sue Kelly, and anybody remotely near it. Why can't they just support a bill? Why tell patients lies about insurance company conspiracy theories?

LDA used to support the Senate passed bill. Now they are in full opposition?


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LHalins
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The reason patients should support HR 2526 include:

HR 2526 establishes an Advisory Committee in the Office of Secretary at the Department of HHS. The Committee will bring patients' voices to the table. It is an advisory committee that can be passed and already has been by the Senate.

HR 2526 increases funding for Lyme and tick-borne disease research and education with oversight by the new advisory committee.

HR 2526 passed the Senate unanimously in a previous Congress so it is realistic as to what can get passed for patients.

HR 2526 holds government Lyme disease programs accountable.

HR 2526 is strongly supported by the Lyme disease community, including the national Lyme Disease Foundation, Lyme Disease Society, Michigan Lyme Disease Association, LDF Midwest Task Force, National Capital Lyme Disease Association, Greater Hartford Lyme Disease Support and Action Group, North Carolina Lyme Disease Foundation, Lyme Disease Network of South Carolina, Lyme Disease Association of Massachusetts, Ticked Off and Fed Up, Hope to Heal Lyme, and other Lyme disease organizations, support groups, patients, and physicians across the country.


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lou
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It would be in everyones best interest for these groups to work together. Most of us out in lyme land have no way except superficially to evaluate legislation. We don't know the inside story on changes in legislation, what can pass, etc. What we do know is that we have been outmaneuvered in the past by the opposition (the Steerites and the govt health agencies), and we should try to avoid it this time around, if it is possible.

It is an impediment to having lyme groups work together when they do things that would antagonize or insult the others. Makes it less likely that we can all be friends and work together for a common goal. We all know what the problems are. No disagreement at all on that score.

I know it is human nature to differ on methods, but it would sure be valuable if these differences could be resolved.


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LHalins
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I really do not think it helps the unity of Lyme disease patients when the opponents of HR 2526 launch vicious personal attacks on the bill's sponsor and those patients supporting it.

I certainly want everyone to work together, and all groups did work together when S. 969 passed the Senate (now HR 2526).


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Mo
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A provision to include Lyme literate physicians on the advisory panel is essential.

That is not personal..to the contraty..it is in the best interests of Lyme advocacy, period. For all of us.

I also don't believe it is a viscious personal attack to take note of a bill sponsor's major contributors.

It is wise to be aware that Kelly is supported financially by health insurers.

That's politics, and it does matter.

ILADS has only been behind bill number #2877, and NOT behind 2526.

But, most important..is what was removed from 2526, and that that piece is really essential to Lyme patients and any proposed legislation or funding.

Unfortunately, it's not the case that any bill we can pass is good. A bill without protection of Lyme literacy could do enourmous harm.

Mo

[This message has been edited by Mo (edited 22 June 2005).]


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DR. Wiseass
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Cave honey- that's a wicked little song you found there. You sing that in the shower?

Seriously, I agree with the others that we ALL must begin to get along with each other.

I think it would be in our best COLLECTIVE interest for us to contact both Smith AND Kelly's offices and PLEAD with them to meet and come to an agreement on the BEST bill language.

I know that behind closed doors there are meetings taking place at this moment. Some in politics are definitely trying to get these 2 to come to terms with each other -

BUT I think it would really send the message home with them if they started receiving phone calls, faxes & emails letting them know that THE LYME COMMUNITY NEEDS TO BE UNITED - and that must start with them! They need to know that we are watching their moves - and that UNITED we can get a good bill passed.

Just my opinion. And it sounds even better if you hum the national anthem while reading it.

------------------
DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com


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Mo
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I think with two bills on the table in realtime..
we need to educate and focus and rally behind the bill that is best for Lyme patients.

this is legislation..there shouldn't be anything personal..it's about which bill is better for Lyme sufferers.

The Smith Bill (#2877) is set for research into chronic lyme.

The Kelly bill is not.

It's that simple...I am active with neither 'Lyme group' behind these Federal bills..
I'm just a Mom who wants care for Lyme in our children's future.

I think we all need to look at it from the point of view of what is best for our future..

I agree the split between Lyme groups is rediculous and detrimental, but if we have good legislation on the table..as long as it stays good (cuz things can change),
we should support it and rally together as patients behind it..
I don't think we have the time or ability to change whatever reasons there may be for the rift between groups when legislation comes up. It's crazt and who knows what the motivations are, I say lets just support the legislation(s) that are good for Docs and patients!!

Ilads, LL medical society, supports the Smith Bill.

Lyme group affiliations matter little in this, it's about the legislation itself.

Mo

[This message has been edited by Mo (edited 22 June 2005).]


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laserred
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^^UP^^...
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LemonZinger
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I came here earlier expecting some discussion about the two proposed bills, hoping for some objective information. I'd like to share some food for thought I got in my email today-- well, yesterday by now! worth some consideration.

After seeing this and checking out the links, I am concerned about the Smith bill pouring research dollars into the wrong hands. BTW, I tried searching at the NAS website as suggested but the only way I could come up with links containing Steere, IOM & Lyme disease was directly at google.com, not at NAS.

Here's the post I got today, unaltered:
==========================================
My take on the two bills pening.

When I first started looking at both bills, first the Kelly bill since it was introduced first then the Smith bill, I really didn't notice much of a difference except for the dollar amounts requested. I though it would be great to have $100,000,000 but realistically in this economy we are in now, I felt that the one that had a chance of passing was the request for $50,000,000.

Upon further research I noticed who would be benefiting from the dollars. The Institute of Medicine (IOM), which is part of the Nat'l Academy of Sciences (NAS, which houses the IOM), to do a chronic Lyme study. Once the money goes to the NAS, the HHS advisory committee has no oversight in the study. There is no transparency in the study when it hits NAS. It is done according to NAS's choosing, with NAS selecting its own advisory committee, and conducting ALL deliberations in private closed meetings. (look at the attached web sites and the familiar players, Steere, Wormser etc)

This is a problem because Sunshine laws only cover government activities.

There are no laws that allow for any public oversight of how another chronic Lyme study is done outside the government.

A search of the NAS website shows that NAS is already aligned with the

medical side that declares two-weeks cures all. Go to the National Academy of Sciences and search for both "Allen Steere" and "Lyme disease." Only one side is presented within NAS' own paid publications. He is their expert and has authored, FOR NAS, publications on Lyme, which NAS published.

Why spend this time getting a Tick-borne Advisory Committee and then

Give the money to a nonprofit outside this committee's reach? And, especially, why give it to the group that already has expressed its views as being on the opposite side to the patients and clinicians ("stakeholders") voicing their lack of having input into these studies?

However, the Kelly bill gives money only to areas that the Tick-Borne Advisory Committee has oversight of. Why fight for an advisory committee and then give money covering a study into the most sensitive area of Lyme, the definition of, diagnosis of, and treatment of Chronic Lyme, to a place where the public has no input? This is like shooting oneself in the foot!

Again, let me emphasize that once the money goes out of the government, into a private foundation, NO ONE BUT THE NAS, has any say in how the money is spent. And, they establish their OWN advisory committee to do studies, choosing THEIR EXPERTS, and the whole process is run by them without input by any governmental body. THE PUBLIC AND CLINICIANS WILL HAVE NO OVERSIGHT over this NEW Chronic Lyme study.

If the money stayed in the government, then the public would have the

"Government in the Sunshine" laws that mandate public meetings, reports, the ability to get Freedom of Information material on the process and funding. NOT SO, with the private NAS. It's private.

The physicians and patients can't survive another chronic Lyme study - Klempner and Steere have pretty well done us all in already.

I've had a few calls from people asking about Sue Kelly. It is my understanding that she was not Lyme friendly in the past until she dealt with the effects of Lyme disease personally. I would like to think that maybe because she has dealt with Lyme personally that this has changed her mind in regard to the seriousness of Lyme disease. I also believe that the people who were on the other side can come around especially when they themselves have had to deal with Lyme disease.

In reference to working with the ALDF, I've also noticed other groups who are Lyme friendly who have associated/worked with the ALDF and I often wondered why.

This is my understanding of the major differences of the two bills.

Note last on the list... ( ) http://www.iom.edu/subpage.asp?id=3939
Edward McSweegan, Ph.D.National Institute of Allergy and Infectious Diseases, National Institutes of Health Bethesda, MD
http://www.google.com/search?q=IOM+Allan+Steere&sourceid=mozilla-search&start=0&start=0&ie=utf-8&oe=utf-8

http://www.google.com/search?q=IOM+Allan+Steere&sourceid=mozilla-search&start=0&start=0&ie=utf-8&oe=utf-8

http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=2672&nbr=1898


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DR. Wiseass
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LemonZinger -

Thanks for your input...definitely food for thought - something more to look into!

------------------
DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com


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valymemom
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So who are our lobby members? Who looks at the language of both bills and recognizes deception/ traps that will hurt us bad?

Who? Who? I am new to the politics. Someone mentioned there will always be division in methods........I agree, but who are we putting our trust in (for each bill) to immerse themselves in bureaucratic law and the ways of the Capitol Hill world?


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Mo
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I'm sure ILADS and the LDA and their affiliates have spent allot of time working on and considering legislative strategies to best help.
They support the Smith bill only.

Hopefully, those familiar with it can address the confusion presented by new posters here on the Kelly Bill.

I think it we have to be careful about solicitation without education.

I'm not understanding the analysis of the Smith bill above as accurate about controlling the money..hopefully we can clear that up.

It's confusing for us patients when two bills are being pushed claiming to be best for patients. It's like a divide and conquer sort of thing and is unfortunate.

But, since there are two bills need to focus on the accurate assessment of the differences.

I have read about ILADS and LDA position
(presented by long term Lyme political activists) that the members of the advisory panel are key elements in the better controlling the direction of the research.
That's what LDA and ILADS are figthing for with the Smith Bill. ILADS consists of most of our LLMD's!

Seems to me, that if there is no assurance Lyme literate Docs and patients are on the advisory panel, we would be open to a much bigger chance the research could go in the wrong direction.

Perhaps someone knowledgeable can explain how the research would be implemented inder the Smith bill.

Mo

[This message has been edited by Mo (edited 23 June 2005).]


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GEDEN13
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i would think these two new poster's,know nothing about lyme disease.

fisrt off, they don't break up there paragraph's,when they write on here.

i can't read it.they should know,that lymed people have a difficult time reading there stuff.or is that why they do it.

and 2nd, i won't let a stranger in my house,and let them tell me how to run it.....this is what's happening here..

gary

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


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Mo
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Copying Ellen's post from another thread..
I'm sure we can find out more when more folks backing 2877 share details:
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++


I think you're right, Luke, that the Kelly bill was an LDA bill when it was introduced last year. The political climate at the time made it seem less possible get through a more effective bill.
However, the political climate is more promising this year. Thus the stronger bill, HR2877.

For one thing, chronic Lyme itself is more recognized. For example, in the last year ILADS' published guidelines were accepted on the Guidelines Clearinghouse of the federal government. Results from Brian Fallon's NIH funded study were presented at the LDA conference and validated the existence of chronic neuro lyme.
A study by prestigious researchers partly funded by the LDA and published in a very prestigious journal proved one way in which the Lyme bacterium survives to cause chronic illness.

Anyway,times change and if we can get a better bill, we should.

I want a treatment for chronic Lyme disease. I love getting to know all the Lyme patients on-line, but it would be real nice to have a few years in which I could count on getting out of bed most of the time.

I think that the SMith bill, HR2877 , with its greater emphasis on chronic illness and greater emphasis on treatment is much more likely to give us better treatments.

So my choice is simple.

I hope that others will read HR2877 and HR2526 as well and decide which bill is better.

HR2877 is at www.lymediseaseorganization.org/HR2877.html

Ellen


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lou
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I don't think you can discriminate against people just because they are not frequent posters to lymenet. Some of the most active and productive people in the lyme world are too busy to come here and post frequently. So, maybe cut some slack here on this point?

The Institute of Medicine study has also worried me. If you go to their website, they say that the sponsor of a study has little or no input. Means that it is entirely free of outside influence. That could be good or bad. I think it would be bad in the case of lyme.

It is probably irritating to the people who are working on our behalf on these lyme bills to keep hearing from the peanut gallery. I admit I am ignorant. But am worried. We had intelligent people involved in the NIH study, advisory committee and they were trusting. And they were hoodwinked, taken to the cleaners. It was little red riding hood against the big bad wolf. It still is. The wolf is still doing the same old things and will not change of his own accord.

We are up against the pro's and they are people who will do ANYTHING to get their way. They have lied and cheated in their research, designed studies to produce predetermined results. I don't think we can assume the IOM study will be in the finest traditions of science. It would be very easy to coopt this one too.

I have to admit that trying to outwit them looks very difficult to me. Don't know the answer. Hoping someone else does. But I sure don't want us to take any foreseeable risks.

This is why we need to all be working together. Even then it is very chancy. But a divided house......a bad battle plan.

[This message has been edited by lou (edited 23 June 2005).]


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Mo
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The way I understand it so far..

is there are risks under both bills, but much less so under 2877..
based on the written text, and assurance of LL patients or Docs on the advisory panel.

It seems even with that, as some have pointed out, there could be problems..
but, without it?

(I also feel we must consider the politician's backing..that is influential almost always)

So..it seems, unless the Lyme community leaders decide the bill must be killed (if it takes a turn for the worse)..
we should support the best one on the table.

I'm hoping someone can explain the existing safeguards regarding the IOM research.
The advisory committe is to have some say over research priorities, ect..
so I don't think it's accurate to say it will be out of their hands.
But - it would be nice to have better explaination, it's a concern.

Re: the Kelly bill, Sunshine or not, the research will be government run, with no assurance of Lyme friendly panel members. Is that safe? Who's to say the govt. run researchers will listen to the public?

Mo


[This message has been edited by Mo (edited 23 June 2005).]


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pmerv
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I want to post my reply to the message posted above by LemonZinger, which I sent to the author when he posted originally on another group I am on. Here's what I wrote:

Randy, I think our (meaning the Lyme disease patient community) protection comes from the emphasis in several place in the Smith bill on "balance," "spectrum of opinion.' The bill even requires IOM to look at the ILADS guidelines. The exact language is:

SEC. 3. STUDY BY INSTITUTE OF MEDICINE. (a) IN GENERAL.--Not later than 90 days after the date of the enactment of this Act, the Secretary shall request the Institute of Medicine, National Academies of Sciences, to enter into an agreement with the Secretary for the conduct of a study of chronic Lyme disease. Such study shall include a systematic assessment of empirical evidence of treating physicians, as well as published peer-reviewed data, and shall include recommendations for addressing research gaps in diagnosis and treatment of chronic Lyme disease and an assessment of treatment guidelines, such as those of the Infectious Diseases Society of America and those of the International Lyme and Associated Diseases Society, and their utilization.

This means that the IOM study will review and assess ALL the research. If you look at the IDSA guidelines, you see that they only quote each other and ignore one side of the spectrum of research on Lyme. If you look at the ILADS guidelines, you see that they cite a lot of studies and case reports that are not deemed adequate to IDSA - IMO because they do not reach the desired conclusion but prove the opposite (like more treatment does help, or repeat treatments do help, or people treated still have positive PCRs, etc). So the IOM will be looking at ALL. I think we can stand an honest look at ALL. It's the spin that kills us, when the powers only cite one side and try to shut out the our side. Steere is obviously part of the spectrum and has some valid observations. I've often cited Steere to support a patient-friendly point I'm trying to make. (The points ARE there, they are just hard to find.) It's just that he is only a small part of the big picture, and we want to look at ALL of it. An IOM meta-analysis will do that.

The other problem with the Kelly bill is that the committee really has no authority. The main players who are supposed to be coordinating and eliminating overlap are not even required to be at the table. The language is weak - it's the "sense of congress," and the Secretary should "consider" doing something. In contrast the Smith bill tells them what to do and how to do it. So the goals, which are central to the Smith bill, that direct the HHS Secretary to develop a plan to implement, in Kelly are merely suggestions, added as an afterthought at the end of the bill.

HR 2877 limits the funding to IOM to $500,000. Your figures are a bit off - Kelly asks for $10M/year, Smith for $20M/yr, both for 5 years. The money is peanuts anyway - NY State spent $31M in ONE year on West Nile virus. I don't think it's the money that's going to hang these bills up.

Even if we don't get all the goodies in Smith, I believe strategically we are much better off asking for a whole loaf and settling for less, than only asking for a slice of bread in the first place.
pm


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Mo
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Thank you very much for this clarification.

Mo


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lou
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Thank you, pmerv, on the IOM info.

Here is what it looks like to me:

OK, Mr. BB Wolf, you can take LRR Hood on a picnic. We are not going along to chaperone. Although you are a carnivore by nature (my what long sharp teeth), on the menu is organic broccoli, oven baked wheat thins without trans fats, and other healthy stuff. Report back here afterwards. We think you will do the right thing, even though in the past you ate LRR Hood's immediate family plus several of the neighbors.

[This message has been edited by lou (edited 25 June 2005).]


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NP40
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quote:
Originally posted by GEDEN13:
i would think these two new poster's,know nothing about lyme disease.

fisrt off, they don't break up there paragraph's,when they write on here.

i can't read it.they should know,that lymed people have a difficult time reading there stuff.or is that why they do it.

and 2nd, i won't let a stranger in my house,and let them tell me how to run it.....this is what's happening here..

gary


The above statement is precisely why the lyme community can't get help. We're fractionalized, disorganized, and harbor this ridiculous infighting. Small wonder that politicians don't take us seriously.

Gary, the poster you're referring to, I e-mail often. She's extremely legit, did her homework, and offered an educated opinion. Instead of attacking her, why don't you read the damn legislation yourself, and get the actual facts.
Let's try to engage the ol' brain box, before running our mouth.


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brainless
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ditto NP40
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ellenluba
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Hi Lou,
I'm not sure I completely get your analogy.

Is the IOM the big bad wolf here? Since your response is to pmerv's post, I'm guessing that's what you mean, but please let me know for sure, so I can try a halfway intelligible response.

And Cave, you and I may be the only ones here old enough to remember Tom Lehrer.
Ellen

quote:
Originally posted by lou:
Thank you, pmerv, on the IOM info.

Here is what it looks like to me:

OK, Mr. BB Wolf, you can take LRR Hood on a picnic. We are not going along to chaperone. Although you are a carnivore by nature (my what long sharp teeth), on the menu is organic broccoli, oven baked wheat thins without trans fats, and other healthy stuff. Report back here afterwards. We think you will do the right thing, even though in the past you ate LRR Hood's immediate family plus several of the neighbors.

[This message has been edited by lou (edited 25 June 2005).]




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lou
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Yes, Ellen, I was speaking of the IOM study. Have said this before on the forum, but my problem with this is that the IOM does not come from some other unbiased planet. When they go looking for lyme "expertise" they will just come up with the same old people like Steere, Dattwyler, Wormser, etc. Look at the members of the IOM, they are from the big medical institutions and academia, the same fat cats they have done us so much harm in the past.

I, too, thought the IOM was the way to go. Thought this when I was more innocent and had not yet seen just how corrupt/incompetent these people could be in NIH funded research. Just think about Klempner mishandling lab samples and saying that the luat was worthless. Was this incompetence or intentional? Does it matter? The result is the same.

If they do things like this and like shutting out the most experienced lyme physicians at the NY internatl conference, why on earth would they suddenly get religion and mend their ways?

I think the only things worth doing are those that have adequate oversight to prevent scientific frauds. Clearly, as long as the NIH and CDC are pushing and funding mostly ignorance, we have got to be very careful what we ask for.

We would have better luck, in my opinion, getting the kind of unbiased survey that is wanted from the IOM, a better chance of an honest outcome if we took a group of engineers to look at the evidence.


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LemonZinger
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Hi,
I am still following this when I get a chance. Not that I have an answer to this problem of two bills to choose between, but if the Smith bill ends up being the favored one, I seriously think the wording regarding funding to IOM should be removed from the bill.

See for yourself: Ed McSweegan is liason for the "Members of the Forum on Microbial Threats" of IOM: http://www.iom.edu/subpage.asp?id=3939 (see at the very bottom of the page.)

He did such a number on the LDF and wrote an awful fictitious short story mocking a woman who "thought she had Lyme disease"; why would he change his tune now and take an open-minded look at ILADS guidelines? IOM has already been connected with ISDA's guidelines publicly at this webpage: http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=2672&nbr=1898 (Practice Guidelines for Lyme Disease... with the bibliography referring to these authors: BIBLIOGRAPHIC SOURCE(S)

* Wormser GP, Nadelman RB, Dattwyler RJ, Dennis DT, Shapiro ED, Steere AC, Rush TJ, Rahn DW, Coyle PK, Persing DH, Fish D, Luft BJ. Practice guidelines for the treatment of Lyme disease. Clin Infect Dis 2000 Jul;31(Suppl 1):1-14. [99 references].

I am unclear what the connection is, but IOM is on the same page as a reference so apparently the govt. likes [maybe influences???] this organization.

I don't trust NAS/IOM, for these reasons and other indications on the home page (http://www.nationalacademies.org/) of NAS that give me an idea of what's important to NAS/IOM.

This link http://lab.nap.edu/nap-cgi/discover.cgi?term=lyme&restric=NAX gives an indication of some of their Lyme-related research. I wish I had more time to investigate this but I don't.

For the person who thinks people like me don't have Lyme disease based on how often I post or how I spaced my paragraphs, I am sorry he/she is so quick to judge. I do not have much time to spend on the internet and I do have LD but it's in remission.

My eyesight was not affected in a manner that impaired my reading. I have done what I could to enlarge the text and make it more readable for those with reading impairments. I hope it works. If not, I will edit this to remove the faulty html code.

Looking for answers to this disease!

Lemon Zinger


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LemonZinger
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OT:

Ok, the code worked! This is what I used before my text: [FONT size=5], and I ended after the last word with [/font] to end the command but you have to substitute the angles on the comma and period keys for [ ] to work.

It was kind of big, so this time I did it with [FONT size=4]


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lou
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Went to that page and found that Mike Osterholm is listed as a member of the forum. He is one of the reasons that people in Minnesota can't get treatment for Lyme disease.

If Klempner study being used by insurance companies to deny payment for lyme treatment, just think what an IOM report that went against us would do. Doesn't bear thinking about. Should we take any chances on this? I don't think so.


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dontlikeliver
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I don't know where the following originated, but it is interesting
------------------------------

BE VERY AFRAID OF THE SMITH BILL -

YOU THOUGHT THE KLEMPNER STUDY WAS BAD FOR OUR DOCTORS - WAIT UNTIL YOU
SEE WHAT THE IOM STUDY HAS IN STORE FOR ALL OF US. DON'T BE FOOLED INTO
THINKING ANY MEMBER OF CONGRESS CAN "HANDLE IT."

IF THE SMITH BILL PASSES, KISS YOUR CHANCE OF GETTING MEDICAL CARE GOOD-BYE.


* NO MONEY OUTSIDE THE GOVERNMENT - NO IOM CHRONIC LYME STUDY.

TELL YOUR HOUSE MEMBER TO OPPOSE THE SMITH BILL UNTIL THIS PROVISION IS
TAKEN OUT!!!!!

All funding for tick-borne disorders must remain within the government
in order to ensure oversight by both the Tick-borne Advisory Committee
(why establish this committee if you place the study grant outside its
control?) and the public through the Government in the Sunshine laws
that require open meetings and the right of the public to access
information through Freedom of Information Requests.

The Institute of Medicine (IOM) has a horrible track record for taking
the government's position and harming the patient population. If you
doubt this, take a look at what the IOM did to handicapped children that
were victims of vaccine-related injuries. The Robert F. Kennedy, Jr.'s
investigative article in this month's Rolling Stone magazine, Deadly
Immunity Robert F. Kennedy Jr. Investigates the Government Cover-up of a
Mecury/autism Scandal, should raise multiple red flags about Chris
Smith's Lyme bill giving money to the IOM. Be VERY afraid about this
move - because you will watch as the IOM uses its favorite Lyme expert,
Allen Steere, to oversee it's Lyme study as the CDC directs the IOM in
its grant. And, since the IOM is a private foundation, it can do
whatever it wants with the grant, conduct closed meetings, and not allow
access to its data.

Kennedy writes about a secret meeting where government officials
concocted a major cover-up of the real scope and cause of
vaccine-mercury inducted autism in innocent children. The CDC did two
things: 1. They moved government data to outside the government, which
put the information outside the scope of FOI's and kept the information
secret. Giving a Lyme chronic grant to the IOM, a private nonprofit,
would ensure that no information would be disclosed to the public. 2. It
directed the IOM to conduct a study and the CDC directed the IOM about
the conclusion that it wanted. The CDC got its desired conclusion and
outcome. Patients lost.

---------------------------------------
Robert Kennedy wrote, ``But instead of taking immediate steps to alert
the public and rid the vaccine supply of thimerosal, the officials and
executives at Simpsonwood spent most of the next two days discussing how
to cover up the damaging data. According to transcripts obtained under
the Freedom of Information Act, many at the meeting were concerned about
how the damaging revelations about thimerosal would affect the vaccine
industry's bottom line. "We are in a bad position from the standpoint of
defending any lawsuits," said Dr. Robert Brent, a pediatrician at the
Alfred I. duPont Hospital for Children in Delaware. "This will be a
resource to our very busy plaintiff attorneys in this country." Dr. Bob
Chen, head of vaccine safety for the CDC, expressed relief that "given
the sensitivity of the information, we have been able to keep it out of
the hands of, let's say, less responsible hands." Dr. John Clements,
vaccines advisor at the World Health Organization, declared that
"perhaps this study should not have been done at all." He added that
"the research results have to be handled," warning that the study "will
be taken by others and will be used in other ways beyond the control of
this group."

In fact, the government has proved to be far more adept at handling the
damage than at protecting children's health. The CDC paid the Institute
of Medicine to conduct a new study to whitewash the risks of thimerosal,
ordering researchers to "rule out" the chemical's link to autism. It
withheld Verstraeten's [ed. a researcher who found thimerosal dangerous]
findings, even though they had been slated for immediate publication,
and told other scientists that his original data had been "lost" and
could not be replicated. And to thwart the Freedom of Information Act,
it handed its giant database of vaccine records over to a private
company, declaring it off-limits to researchers.

If federal regulators and government scientists failed to grasp the
potential risks of thimerosal over the years, no one could claim
ignorance after the secret meeting at Simpsonwood. But rather than
conduct more studies to test the link to autism and other forms of brain
damage, the CDC placed politics over science. The agency turned its
database on childhood vaccines -- which had been developed largely at
taxpayer expense -- over to a private agency, America's Health Insurance
Plans, ensuring that it could not be used for additional research. It
also instructed the Institute of Medicine, an advisory organization that
is part of the National Academy of Sciences, to produce a study
debunking the link between thimerosal and brain disorders. The CDC
"wants us to declare, well, that these things are pretty safe," Dr.
Marie McCormick, who chaired the IOM's Immunization Safety Review
Committee, told her fellow researchers when they first met in January
2001. "We are not ever going to come down that [autism] is a true side
effect" of thimerosal exposure. According to transcripts of the meeting,
the committee's chief staffer, Kathleen Stratton, predicted that the IOM
would conclude that the evidence was "inadequate to accept or reject a
causal relation" between thimerosal and autism. That, she added, was the
result "Walt wants" -- a reference to Dr. Walter Orenstein, director of
the National Immunization Program for the CDC.

In May of last year, the Institute of Medicine issued its final report.
Its conclusion: There is no proven link between autism and thimerosal in
vaccines. Rather than reviewing the large body of literature describing
the toxicity of thimerosal, the report relied on four disastrously
flawed epidemiological studies examining European countries, where
children received much smaller doses of thimerosal than American kids.
It also cited a new version of the Verstraeten study, published in the
journal Pediatrics, that had been reworked to reduce the link between
thimerosal and autism. The new study included children too young to have
been diagnosed with autism and overlooked others who showed signs of the
disease. The IOM declared the case closed and -- in a startling position
for a scientific body -- recommended that no further research be conducted.

The report may have satisfied the CDC, but it convinced no one. Rep.
David Weldon, a Republican physician from Florida who serves on the
House Government Reform Committee, attacked the Institute of Medicine,
saying it relied on a handful of studies that were "fatally flawed" by
"poor design" and failed to represent "all the available scientific and
medical research." CDC officials are not interested in an honest search
for the truth, Weldon told me, because "an association between vaccines
and autism would force them to admit that their policies irreparably
damaged thousands of children. Who would want to make that conclusion
about themselves?"
-----------------------------------------------

All of Congress's power wasn't enough to get the original data, nor to
withdraw the IOM report or recommendations, nor reissue the report with
a different conclusion. And, as the process proceeded forward, no public
individuals were allowed to be present for the deliberations and no data
was every made available to others.

The IOM study is one of the Lyme Communities worst idea's ever. Anyone
supporting this grant program is helping to tie the noose around our
doctors necks and once again blocking patients access to medical care.

Don't support the Smith bill because it will exceed the Klempner study
in damaging us all.

Frankly, I can't help but wonder if this study is designed for just that
- to empower the CDC with more data to hurt us all. This combines with
the fact that the CDC/FDA/NIH reviewed of Smith's Lyme Bills before his
introduction (they said they already accomplished his goals) and his
changes - make we wonder who side he really is on.

If you want to see real disease commitment by Chris Smith, look at Chris
Smith's Alzheimer's bill H.R. 1262 - This gives $1.4 billion for
Alzheimer's research. In addition, look at the great wording. It doubles
NIH's funding of Alzheimer's disease research and requires NIH to give
this disease ``priority.'' It even allocates $250 million for caregiver
programs.

Before Chris Smith was removed from the Chairmanship of the Veterans
Committee because of actions in the House, we asked him to submit
legislation directing money be set aside for a chronic lyme study in the
veterans administration. A LLMD was on the clinical trials advisory
board and the study could have been done in the Northeast. But, he
declined to do this. And, the last session he didn't bother to put in
any lyme bill. Last session, Rep. Kelly put in the House companion bill
to the Senate version (the same one as now). The Smith bill duplicates
that wording with some changes by Pat Smith.

Get past the Individuals involved and think about this. LDA supported
NIH doing a chronic Lyme treatment study - and we got the Klempner
study. LDA supported getting Igenex's LUAT included in this, and we got
articles and presentations that got Igenex in legal hot water and a bad
reputation. It has taken years for Nick and our doctors to dig their way
out of those debacles. Here we are again. And, you should NEVER support
the Smith bill because of this provision.

Ask Chris to delete this portion of his bill because it is unacceptable.

Whose side is he on?


Karen Vanderhoof-Forschner




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ellenluba
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Since there does need to be an analysis of the research already done in order to separate the wheat from the chaff and clarify what research needs to be done, is there another agency that you think would do a better job?

I mean that as an honest question. I'm not just being coy.

(Of course, we would love ILADS to do it, but we ain't gonna get that.)

But the bill does require that the IOM include the clinical evidence gathered by our`LLMDs.

And remember the Smith bill establishes chronic Lyme disease as a serious reality that does not yet have a totally effective treatment.

By definition, the days of calling it rare and easily treated are over, leaving us less vulnerable to the Steerites.

And Brian Fallon's study validating brain changes in neuro Lyme and long term treatment will have been published - trumping Klempner.

BTW, the IOM is not doing the actual research to find a treatment. They are just putting out a report on what existing research says.
Nite nite,
Ellen


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Lishs mom
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quote:
Originally posted by ellenluba:

(Of course, we would love ILADS to do it, but we ain't gonna get that.)

But the bill does require that the IOM include the clinical evidence gathered by our`LLMDs.

And remember the Smith bill establishes chronic Lyme disease as a serious reality that does not yet have a totally effective treatment.

By definition, the days of calling it rare and easily treated are over, leaving us less vulnerable to the Steerites.

And Brian Fallon's study validating brain changes in neuro Lyme and long term treatment will have been published - trumping Klempner.

BTW, the IOM is not doing the actual research to find a treatment. They are just putting out a report on what existing research says.
Nite nite,
Ellen


I think the key to this is balance. If we go in asking for only ILADS to be on the board, we will get resistance. If we go in asking the IOM be removed we will get resistance.
If the IOM review is required to incorporate the ILADS clinical guidelines, then those clinical guidelines will be included.

There is not going to be an easy answer to 25 years of disharmony regarding lyme disease.

however, in the Kelly (who has a huge backing by insurance companies --ranked highest bidder for support of Kelly)
bill there are NO PROVISIONS to include any treating phsycian studies, no studies by other scientific backgrounds such as Straubinger, or International research done in Sofia Bulgaria by Svetlana somethingorother.

The provisions in the smith bill include many many avenues of research, and clinical studies, regardless of the association.

Any govt group that we have been working with in the past only seems to include JAMA or Ped Redbook, which are strongly correlated with insurance cost reduction studies. Therefore, we must move a bill which will include the arena of patient, veterinary and other microbiology research and clinical doctors [who have not been allowed to present in JAMA due to their chronic lyme stand], to expose all aspects of lyme disease, not just the early stage, non disseminated forms.


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