NIH Does Not Comply with Congressional Appropriations Language
Lyme Patient Groups Compelled to Withdraw from Scientific Meeting
September 20, 2010 - In a move designed to protest the Institute of Medicine's upcoming Lyme disease workshop, three of the nation's largest and most influential Lyme groups have pulled out of the process.
After much deliberation, speaker Diane Blanchard, co-president of the Time for Lyme (TFL- CT) has withdrawn from the panel. The national Lyme Disease Association (LDA- NJ) and the California Lyme Disease Association (CALDA), along with TFL, will not participate in the workshop and their IOM commissioned scientific paper will not be submitted.
The scientific workshop was promoted by the Institute of Medicine (IOM) to be a conference about the state of the science regarding Lyme and tick-borne diseases.
Despite the groups request for transparency and a balance of scientific viewpoints, as delineated in Congressional Appropriations language, neither the hearing panel nor the speakers selected by the IOM satisfy the Congressional intent or objectives.
The IOM's mission was to provide ``independent, objective and non-partisan'' advice to policy makers, yet the majority of the participants sitting on its Lyme disease panel belong to the Infectious Diseases Society of America (IDSA), a medical society with a known bias.
Many key speaker roles were given to physicians who are IDSA members and supporters, a number of whom were involved with the IDSA's controversial guidelines for Lyme.
IDSA's Lyme guideline development process was investigated by the Connecticut Attorney General which resulted in exposing the guideline panel as being riddled with undisclosed conflicts of interest.
In spite of the recommendations to NIH by Congress, the conference opens with perhaps the most polarizing figure in the chronic Lyme debate-- Dr. Gary Wormser of Westchester Medical Center -- who chaired the IDSA Lyme guideline panel and whose highly controversial biased views are well known.
There are no scheduled speakers with opposing viewpoints of similar scientific weight to balance his presentation about the research gaps in Lyme disease.
Many state-of-the-art scientific researchers and experienced clinicians have been relegated by the IOM and NIH to simply spectator positions.
The patient-oriented Lyme groups believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity. ``
We believe the entire process has the potential to cause additional harm to patients. After much deliberation our only recourse is to withdraw our support for this seriously flawed process.
From the inception, TFL, LDA and CALDA have communicated our concerns, which were ignored. We remain hopeful that NIH/IOM will revamp the program to comply with the Congressional language which was responsible for initiating the workshop,'' the groups said in a joint statement.
Time for Lyme, www.timeforlyme.org, the national Lyme Disease Association, www.LymeDiseaseAssocation.org, and California Lyme Disease Association, www.lymedisease.org, are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this emerging infection.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wow ! That speaks volumes. I hope people in high places are paying attention !
I admire their decision and am glad they are all 3 working together on this issue.. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Personally I think this was the wrong move. If the panel is already stacked against us then withdrawing just makes it more one sided.
It is a kind of no win position for our side whatever we do.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
These are MY words and MY opinions... as if you couldn't tell.
Lou, short answer- we can't shut down the corrupt process... or change the bias of the panel members or makeup of the panel (we've tried), but we can protest the event and not allow the IOM/NIH to get away with putting our "paid" endorsement on their final report that will not be favorable to any of us.
IOM commissioned ($) some Lyme support groups to submit their views on the research gaps in science (topic of the workshop).
Additionally, Diane Blanchard, from Time for Lyme, was invited to speak at the workshop for a few minutes (on the last day of the workshop, after 5 PM)- our "token" patient representative- sandwiched between some ducks, et al.
This is not a prime-time position for her (or us)- nor would anyone be able to cover all that is needed in the 5 minutes she is being allowed (Wormser has 25 minutes I believe- and over 70% of the physician speakers are connected to the IDSA in some way). Sooooooooooo...
Basically, the LDA, TFL and CALDA groups told the IOM/NIH to stuff it and they will not be participating in their horrendously biased and unbalanced joke of a workshop out of concern for the patients and to protest the IOM/NIH's sneaky conniving stupid stuff they are pulling.
Basically they are trying to rubber-stamp the current IDSA position.
In my opinion, there is NO way the IOM panel's final report will be a fair rendition of what is needed from a patient or LLMD perspective, nor will it be an accurate reflection of the state of the science.
Heck, the IOM did a whole segment on Lyme disease for Oklahoma Reservation Native Americans and not one showed up, benefitted from it or contributed to it ... yet the IOM ignored the areas of the country and populations where there is a HUGE problem with Lyme. How stupid was that? How fair and balanced was that?
Anyhow...
That final IOM panel report that will be generated- even if it were 1/2 way reasonable- would also have to be sent through an anonymous panel (we can only guess who will be on it- IOM Reviewer McStupid perhaps?)...
And then once they get done playing with it, it would be sent directly on to Congress as the "official report". These toads have already ignored the science in the IDSA Guidelines, the Review Panel, etc.. so there is no way they will suddenly say, jeepers creepers, maybe these patients are right and do us right.
I don't believe for one minute that all the money in the world would get Wormser (and his buds) to be fair or to tell the truth, so anything we do or say ... no matter how wonderful, true or scientific, would be able to change our circumstances so we would get help going through them.
We are protesting the crooked process and the fact IOM/NIH are not following the language and intent set forth by Congress.
From what I understand, some groups feel being a part of this corrupt process will be a good thing for us and they have taken a stand to support it. But...
ILADS, individual Lyme treating doctors, the 3 Lyme groups above, and several more groups I've heard from are NOT supporting it.
In my opinion, the IOM/NIH is giving us a hammer by inviting us there and they will be using it to put the final nail in our coffins.
posted
It just seems we've lost all our credibility within a few short months. Really discouraged.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
onbam...
Don't be concerned. Some days you're the windshield, some days you're the bug. Today we are the windshield. We will not play their sick games and we took a stand against the corruption and said enough is enough.
And do note- in the IDSA's eyes we've never been credible, the science (other than theirs) was never credible, and our doctors aren't credible. They are just plain old wrong and the truth is coming out slowly but surely.
They've refused to change their Fred Flintstone opinions and would rather sink with their ship than admit they were wrong AGAIN. But their numbers are dwindling, their support is lacking and even the dumbest rocks on the beach are saying what's wrong with this picture.
Over the years we've had to drag them with ropes, like pulling stupid stubborn old mules, for 25 LONG years just to get them to admit...
1. Lyme was a bacterial infection, not a virus.
2. Lyme needed antibiotic treatment, and not just to be watched and recorded like in the Tuskegee experiment.
3. Lyme patients may need additional treatment if the one- two weeks didn't work.
4. Lyme tests are NOT accurate.
5. Their stinking vaccine was no good.
6. Their guideline panel members were biased and riddled with conflicts of interest.
Blah blah blah...
We have a ways to go, for sure... but the sheer numbers of those negatively affected can't be ignored.. IF we keep shouting our messages from the roof tops.
We have intelligent people in high places assisting us now because they can tell there is a HUGE problem with the IDSA credibility.
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
So where is this workshop going to be? Let's protest on the site!! That's how to get noticed. Dog-gonnit, when & where will it be?
Let's get the signs ready, call the press, then tally ho!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bea said.. "It is a kind of no win position for our side whatever we do."
EXACTLY!
I was thinking of submitting a paper that said..
"My dog went to the store."
It would get the exact same attention and weight as all the science we could dig up and submit... the same science that has been out there for years. Even some of their own science they now ignore.
If 1000 pages of science submitted by ILADS didn't kick the IDSA in the head at the last panel hee haw.. there is no reason to think it will now.
The PROCESS is what we are kicking. Until the PROCESS is fair, we get no justice.
Get the corrupt people OUT of here and then we can do business.
posted
So what should we do now to help get the poisoners out? The LDA should have something for us to do tomorrow, and the day after that, and so on.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Arkie...
There will be things you can do to help. We've been very busy dealing with this and are still working on it as fast as we can go.
I hope to have some action alerts out for you (and others) in a couple of days... at least by the end of the week if all goes well. It will have the details on how you can help and make your voices heard.
And you should make your voices heard! Don't let the toads put the screws to you again and again and again.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
onbam... Sorry... didn't see your post till after I posted above.. and forgot to answer one of Arkies questions.
The meeting is in Washington DC area.. and it is in early October.. so we are scrambling to "git 'er done". In fact I am playing around here right now just to rest my brain and get out from under this dumpster of a volunteer job! HA!
Too tired to think and be creative right now... so just here visitin'.
posted
Awesome--look forward to seeing what we can all do.
I just remember the days of weekly LDA action alerts, and wonder where those went. Our numbers are growing so fast; it becomes more imperative every day. By the same token, though, we become more capable every day.
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posted
Pulling out of this corrupt process was the right thing to do. It will just be a repeat of the IDSA guidelines panel fiasco. No lyme groups should continue to be associated with this IOM thing because it will be used to give them credibility when they give us the shaft again.
If this is congressionally mandated, maybe that is where we focus our attention?
There really is no accountability in medicine and a huge amount of corruption.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote: Until the PROCESS is fair, we get no justice.
Being a part of this farce is a waste of time.
Posts: 797 | From New York | Registered: Feb 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Onbam... glad you are waiting to hear. It is being worked on. Just got off a call discussing it.. so it will be worked on ASAP.
LOU- Yes, you are right. This supposed "unbiased" workshop was directed to be done by Congress in the Appropriations bill... the House version I believe. When I get time to finish it, I'll share a paper I am putting together on this that may explain more.
I am getting ready to post an article someone sent me that may be of interest.. linking what we are going through to the autism situation. So sad.
Carly- I agree! We are addressing it on other levels... and just having to address it sucks!
Why can't the toads, just for once, DO THE RIGHT THING?
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
quote:Originally posted by Tincup: Arkie...
There will be things you can do to help. We've been very busy dealing with this and are still working on it as fast as we can go.
I hope to have some action alerts out for you (and others) in a couple of days... at least by the end of the week if all goes well. It will have the details on how you can help and make your voices heard.
And you should make your voices heard! Don't let the toads put the screws to you again and again and again.
Enough is enough!
I pray I can do something directly very soon. I've about used up all my PTO days. If someone else from the forums was going to be there.....
I'd consider just putting air fare on a credit card (UGH) if I had to, just to make my presence. But there is safety & presence in NUMBERS. WE need more of us to stand & protest.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Save your $$. This idea has been throughly thought out and discussed and we feel participating in a corrupt process will not help the situation, only hurt us.
EVERYONE there knows how we feel after all this time. They just don't want to hear us, never have and never will... because we are right!
The approach needs to be different. We COULD fight this and win IF we had been dealing with honest caring people, but we aren't. Pure evil and corruption is all I see.
Got to fight the devil's fire with fire. We need to step up our actions and keep pushing that mountain out of our way.
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
TC, I just sent you an email but it was rejected and bounced back to me.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Bless your fightin' heart, TC!
Yeah, these guys have too much at stake financially for them to give in to what even they said was the truth in LOTS of their own prior research! We have to get more on our side in Congress ready to fight this mess.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Thx for all your work, TC - seems to me the situation also needs to be addressed at the level of the original intent of Congress, because what is going on is a farce.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Onbam said.. "I don't see how demonstrating outside the workshop could be considered "participating."
You can certainly do so if you'd like, please do. Keep in mind you'd need to do all the organizing- ***get permits***- prep all the announcements, make signs, check out the place in advance, contact press outlets, etc. etc. And when it is over, it is over.
In my opinion, we'd be better going a different route... which is what a number of us are working on as we speak.
`````````````````````````````````````````````````` Dawn, not sure why that happened. Here is the address just in case, to double check it.
Work in progress. Congress goes out of session next week supposedly, but possibly as early as this Friday if Democrats get their way... so we are hurrying. I think we will have more news out by tomorrow (maybe as soon as late tonight)?
posted
Well, you're the one who knows about this stuff. If you're conviced there are better ways to go, I'm no one to question.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Time to Rock and Roll!
Let Congress know how you feel!
```````````````````````````````````````````` From LDA, CALDA, TFL
Congress asked for a state of the science evaluation of Lyme disease. What the Institute of Medicine is offering, however, is a biased presentation of views promulgated by the Infectious Diseases Society of America.
Because the IOM refuses to allow speakers of comparable scientific weight to counter the IDSA viewpoint, three major Lyme patient groups have withdrawn their participation.
Here's how to register your protest with Congress.
SIGN FORM IN SUPPORT OF LYME GROUPS
Please let Congress know you support the Lyme groups move to withdraw from the NIH/IOM State-of-the-Science Lyme Disease and Other Tick Borne Diseases Workshop by reading the statement located here
posted
Oh, I'm not saying we should do that at all. And I'm inclined to agree with your approach, as it strikes me as more ambitious.
But of course, and this is my point, I'm on the outside of the political process, so what do I know? NatCapLyme makes a solid argument too, from where I stand, so the result is confusion.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Since ILADS, independent ILADS docs, LDA and its 40 affiliates, CALDA, TFL, and individual patients and support groups across the country are all in agreement and are speaking out against it and objecting in writing about it...
And they are the ones with a successful track record and a lot of experience... and they have been dealing with this matter all along...
And since I know this topic all too well after working on it for months... have come up with many reasons to go in this direction and not in other directions....
And have been following all the goings-on... and have thought this through many times over.... and discussed it with others in the know...
I'm going with the protest.
Supporting the event is like supporting the Klu Klux Klan. There is no way we can change their minds or make their views reasonable... and they don't even want to change their ways... so...
We've gotta fight the basic corruption first and make it a fair playing field.
posted
My biggest concern in signing a petition to withdraw support is that it seems we are abandoning Pam Weintraub, who is presenting. I can't imagine how she must feel right now, knowing that her community is leaving her to face this alone.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
TC, How many have signed this petition so far?
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lymeout...
Pam was informed in advance of the announcement. That was one of the things that was done when decisions were being made. Actually, I personally made sure and even double checked back to be sure she had been notified and was clear on the situation.
Also, keep in mind she was invited there as a book author, not a patient representative, and as a journalist she will be expected to put forth a neutral agenda, not a one-sided appearance like I would do.
Certainly if she feels she wants to stay in that role and be there on her own, it is her choice. If she doesn't and she decides she wants to support the patient community and ILADS, she can. It takes about 2 minutes to resign.
`````````````````````````````````````````````````
Hey ho Joe,
I heard it was going very well and that within the first 24 hours they already had OVER 1/2 the number of people signed on that they were hoping for.
That was really good news! So keep sharing the link to the response form with folks and know we are making a STRONG stand with everyone's help!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Rather than a lot of people emailing me with concerns and me being overwhelmed - sorry all, I am worn out and have more stuff to do (not to mention another stinking headache from the pollen)-
I have addressed most of the concerns at this post.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Drum roll....
Just heard (in less than 36 hours) the Response Form has been filled out by more than 3/4 of the number of people they had hoped to get to sign up, in order to reach their goal.
That's fantastic!
Please keep sharing the form! Congress will hear us... and hear us loud and clear!
posted
Well... it appears I am in the minority on this, but I am still going to put my opinion out there (similar to what I feel should be happening at the IOM event).
I am glad that my local Lyme group has decided NOT to pull out.
While it may seem obviously biased toward the IDSA point of view, I believe it is vitally important for the IOM participants to hear from the other side... and hear LOUDLY. If advocates are not there to present our side, the IOM group might assume that this issue isn't really affecting many people severely.
Here's the ratiole given by my local Lyme group for participating, which I whole-heartedly agree with.
1) The IOM Lyme workshop is not a forum to debate whose science is right or wrong. It is, rather, an assessment of the state of the science as presented from all points of view, for the purpose of determining the science and research still needed. This workshop is not designed to draw conclusions, but to determine where future research needs to go.
2) If Lyme patients and Lyme doctors fail to participate, the only perspective presented will be that of the IDSA. If our Lyme doctors and advocates don't participate, the committee can't include them in the record and it will appear in the report as if we don't exist or care.
3) The IOM committee will accept comments for the record up to 3 or 4 days after the workshop. If you don't know what was said at the workshop, you cannot draw intelligent comments.
4) Clinicians will have a microphone reserved solely for their use, with extra time allocated to their questions or comments which will be included in the final report. Lyme doctor participation is critical or the IDSA clinicians will be the only ones at the microphone and on record.
5) A Congressman worked hard for the appropriation to fund this project. Abandoning this workshop is abandoning him, and will compromise his future ability to argue successfully for Lyme patients in Congress. This Representative needs Lyme community support at this workshop. We cannot ``burn our Congressional bridges'' with the very people who are critical to our cause.
6) When you withdraw from the Washington process, you won't be asked back again. Each time this happens, we lose our ability to be taken seriously. History shows that progress is made when we work within the system, not when we abandon it. Admittedly, it is by nature, a long and arduous process.
Bottom line: the workshop will proceed with or without our community; without representation we concede to the IDSA. We can't let that happen! If the situation warrants it, there will be time to write a minority report.
Posts: 57 | From VA | Registered: Feb 2010
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onbam
Unregistered
posted
Are there actually going to be any Lyme-treating doctors there? My impression was that there were not. Also, it seems that Crazy Eddy and the gang'll probs just edit out all the dissenting points of view.
As for it not being a "forum for debate [or to] draw conclusions [in]."
Argument invalid, as this is completely at odds with its "[determining] where research funds need to go." That is the drawing of a conclusion. Currently none of the research money goes toward the search for the cure, as they claim our illness does not exist.
However, even if its purpose were to do anything other than hammer home a pre-formed ideology , the debate would not be one we could win. Our science is unambiguous; the problem is that the Steerites have chosen to ignore it even if that means killing millions upon millions of innocents. Not even the AG of CT was able to get them to come clean--how could a handful of patients expect to do so in a biased conference?
posted
Also, it seems lymenet goes down after every action alert. Someone needs to find a way to make it more IDiot-proof.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA! That's right! More "idiot proof!" I like that!
JT's mom said.. "I am glad that my local Lyme group has decided NOT to pull out."
I appreciate your opinion, but I'm still very sorry your group has decided to go against the majority AGAIN ... a decision that could undermine the progress we are now making.
I understand because of our stand there is a lot of scrambling going on in the IOM camp, as well as in other places.
I also see one of your group members has managed to slide into that vacant position that was created when the larger groups decided to protest the IOM's biased agenda (along with other approaches they are taking).
Gregg P. Skall, J.D. (confirmed) Counsel, National Capital Lyme and Tick-borne Disease Association Member, Womble Carlyle Sandridge & Rice, PLLC
I still can't imagine how filling a spot that allows 5 minutes on the 2nd day of a 2 day event can do any of us any good. If we were allowed 10 hours in that environment, it still wouldn't do us any good.
Does anyone really think Wormser, et al will bend over and take a licking and then clean up their evil ways just because one patient is there and there are a few written submissions made?
Anyhow... I really wouldn't want to be attached to a report coming from that biased workshop. There ARE better ways to get our point across... playing with the devils in their home will only get us all burned.
I can pretty much guarantee that NO changes will be made in the way the research is headed ... or who the research money is going to (nearly 100 million already wasted from my best estimate) ... and which will, at best, confirm that the status quo IS the way to go.
Even if the IOM were to offer up a few changes here and there to put on a pretty exterior...
Well, let's just say you can put a dress on a pig, but it is still a pig.
BTW- There is still time to protest the obvious problems that are glaring us all in the face.. and make a united stand.
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