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» LymeNet Flash » Questions and Discussion » Activism » Is IDSA planning to "stack the deck" in the guideline review?

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Author Topic: Is IDSA planning to "stack the deck" in the guideline review?
AliG
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Is IDSA planning to "stack the deck"?

Posted 9/9/08 - submission deadline 10/1/08
IDSA Lyme Disease Review Panel Application

excerpt:

Selection Criteria

The Chair and members of the Panel must meet the following criteria:

* must be a clinician or scientist
* must not have served on any Lyme guideline panel
* must be free of conflicts of interest as determined by the ombudsman
* must be experienced in the review and interpretation of the medical/scientific literature
* must have knowledge of Lyme disease and/or other infectious diseases as evidenced by:

o clinical experience and/or
o research experience

In addition, the Chair must meet the following requirements:

* must be trained in infectious diseases
* must be without any beneficial or financial interest related to Lyme disease as determined by the ombudsman
* must have knowledge of Lyme disease but need not be an expert
* must not have previously published a particular viewpoint on Lyme disease
* must have the ability to:

o complete tasks in a timely manner
o consider varying points of view
o bring groups of individuals to consensus



Time Commitment

It is estimated that the review process will take eight - 12 months.

Over this period, members of the review panel will be expected to participate in several one- to two-hour conference calls and attend at least one, two-day, in-person meeting that will include the public hearing.

Panel members will be required to critically review the literature on Lyme disease.

It is estimated that this and any necessary e-mail exchanges will take 10-15 hours per month or two-four hours per week.


*********************************************

I'm wondering how many doctors who are swamped with Lyme patient overload would actually be able to commit this kind of time over an 8-12 month period.

I think it's much more likely that the would get an influx of applications from doctors who don't REALLY Dx or Tx Lyme because they would have much more time on their hands and fewer complicated patients.

I sure hope there have been some REAL Lyme clinicians & scientist willing to make this commitment.

I also hope it won't be easy for them to have had a bunch of sympathetics prepare applications quickly & submit them right after posting, so they can say "sorry, all the spots have been filled already"

I REALLY, REALLY hope that's just paranoid thinking. [Roll Eyes] [Frown]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Allie
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Anybody know if we can send the ombudsman "published pieces" written by quackboxes who keep repeating the IDSA guidlines in the "lay" or "un-peer-reviewed" press? I've got a good stash I'd love to send along.

In fact, I'm going to do just that!

This way we can keep some of these lovelies from sliding onto the panel unnoticed.

Just and idea.

Allie

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AliG
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What about forwarding to AG Blumenthal?

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Allie
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Good point. I think I will send copies of these nasties to both AG Blumenthal and the ombudsman. I think I remember seeing his name somewhere. I'll hunt it down and send them both the offending articles with the authors HIGHLIGHTED!!!!!

Thanks for the advice!

Allie (your namesake).

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Tincup
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NO NO NO NO NO NO NO.

I know you mean well.... at least I keep telling myself that... HA!

[Big Grin]

BUT... FYI-

You can't try to influence the panel in ANY way. Neither can they. That is WHY there is a mediator and the AG office taking care of this situation... even as we speak.

Trust me... the AG's office is NOT pleased with the IDSA dudes.. and will be VERY watchful and be sure it is done right.

So do know...

Measures are already in place to handle your concerns... and have been from the start.

Please... if you don't want me to croak...

Leave it alone and know ... miss ants in pants.. that it is being handled in a professional way by those handling this and the whole AG ongoing actions.

Soooooooooooo..........

Find someone else to pick on if you will and let the big boys and girls do their thing. That is what I was told!

If I thought this wasn't in good hands... I'd say go for it.

But it IS being taken care of.

Otay?

[Big Grin]

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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again, tincup to the rescue ... lol


glad she knew more that this is being HANDLED VERY CAREFULLY in ALL our best interests!!

i'd hate to screw things up unintentionally; wouldn't you?

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Allie
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Tincup --

Can I email you what I was thinking of mailing the AG and ombudsman? It would make me feel better knowing it was in good hands. I sent it to my LLMD, so that should help.

Because it has something to do with my professional life/job I'd rather not disclose info here on a public forum.

It's just a pdf.

If so, I don't have your email to send it to. I can go snail mail as well.

I think it is relevant in choosing the new IDSA panel.

xoxoxo,
Allie

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bettyg
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sent tincup's email to allie ....
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AliG
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The ombudsman's role in this is just to make certain that the applicants being considered are free from conflicts of interest.

Since we would not know who the applicants are, we couldn't possibly know what might be useful.

I would think it might just serve to be annoying to him if he starts getting a lot of info that he doesn't need, and would have to sort through, sent his way.

Likely not the best person for your info since he's not involved with the study authors.


I was thinking that AG Blumenthal might find info that might pertain to other members useful, but I guess TT is right. [Roll Eyes]

There are 8000 members of IDSA, if we send someone ALL the dirt we can find, how would they ever get through it to find one of the few panelists?

It IS likely best to wait & see what happens first.

I hope that you will be ready with that info though, if someone should need it to prove a new panelist (with an old, obstinate mindset) has "previously published a particular viewpoint on Lyme disease".

I think it is great that you are keeping track of that information! Thanks for offering it up for reassurance. [Big Grin]

[group hug]
Ali


You listen here Tinny Teaserpants! [Razz]

You KNOW I've been having issues with paranoia lately. [Roll Eyes] [lol]

If you can assure me that there is a "Plan B" for all the "just in case"s to protect us from further IDSA shenanigans, I will trust you and cut it out.

Can I still nag the Presidential candidates & their campaign organizers?

How about the insurance company, can I still try to make their lives as miserable as they are making mine and provide reciprocal annoyance?

[confused]

I can't stand the suspense anymore.
PLEEEEEASE tell me what's going on.
I won't tell anyone else.
I P R O M I S E !!!!!!!
[bonk]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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lou
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It will be a miracle if they don't stack the deck. Haven't they already said nothing will change as a result of the review?
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Tincup
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Ants in pants said...

"How about the insurance company, can I still try to make their lives as miserable as they are making mine and provide reciprocal annoyance?"

Please... be my guest. And send them a kiss from me too!

[Big Grin]

``````````````````````````````````````````````````

As for the panel... what I know... and MY opinion.

The AG office and omnee bud something or other will be screening applicants.

It will be hard for the ID idiots to be on the panel if they are tainted in the brain at all toward the "no chronic Lyme" hog wash. That is why there is a close watch on them that has been built into the settlement agreement.

There will be a time (hearing) where folks input will be accepted (haven't read it in a while... but from what I remember)... there will be a notice- posted on the IDSA site- when the submission time is ready for input from outsiders. I THINK it is something like a 6 week period to do this.

If you want to submit something.. you might want to read the rules carefully and at least begin to think about what you might like to submit.

There are folks keeping an eye on this who will be submitting a lot of the science.

My suggestion is to wait until the official opening when submissions are allowed.. and most likely there will be an announcement put out with suggestions from those involved (our side).

No sense working your fingers (brains) to the bone till we know who is officially doing what. Don't need duplicates really... so save your energy until we know exactly what is needed and when.

Lou asked if they said nothing will change as a result.

The IDSA wants us all and doctors etc to believe nothing HAS changed and nothing WILL change.

But... as usual.. they are all wet.

If the panel finds even ONE thing wrong with the IDSA guidelines...ONE small thing... it taints the entire project.

Sooooooooooooo..

Then WE say...

The IDSA was investigated for illegal activity and was forced to have an independent panel review their medical guidelines.

And... The independent panel found flaws and the guidelines have been totally tossed out the window... or at the least... they HAD to be rewritten.

Once this happens...

EVERYONE will know they were wrong! WRONG WRONG!! (I'll be sure to spread the word, the media will eat this up... and YOU can spread the word too.)

THEN....

Insurance companies will know they were in cahoots with the Neurology dopes.. and they were putting out bad guidelines too. So they have cut off their nose to spite their face.

(Not that the insurance companies DON'T already know this.. but then it will be official.)

THEN...

WE will tell everyone we WON'T be subjected to BAD guidelines by people guilty of illegal practices putting out bad guidelines... and...

WE WANT ILADS!!! As you know.. ILADS doesn't promote long term treatment. They only say IF needed it can be done.

Then...

No doctor, hospital or insurance company can justify denying us treatment based on those funky guidelines. At least not without being libel if someone were to become sick or disabled following them... and they can be sued for it.

In other words... if you know a car maker was making a car using bad tires and you sold someone the car knowing they were recalled or bad tires.... YOU get in BIG trouble.

ALSO....

The FUN part...

What government agency or private organization will hand over research money to those found SO guilty of illegal practices? Or to people/universities associated with these BAD BAD boys?

You think the NIH can then get away with awarding grants and such to BAD BOYS? NOPE!

And with a BAD reputation and BAD trouble looming over their heads... what university will want to keep these IDiots on their payroll? None! The IDiots won't be "useful" anymore in bringing in BIG bucks so they will be given the boot most likely because now they are an accident waiting to happen.

And if anyone tries to give research money to the IDiots... WE might have something to say about it.

Sooooooooooooo... bottom line.

Their goose is cooked.

We KNOW the guidelines can be proven to have ONE thing.. if not many things wrong with them... and we only need ONE.

Then we throw those bad boys out with the bath water.

Since the IDiots will be BIG time discredited... they can't mess with insurance companies, drug companies, etc.

No one wants to play with the boys with the stinky pants. No sir.

There are few more "good parts to this story.. but I am tired and can't come up with the rest right now.

But this is something to dream about and smile about.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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AliG
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Thanks TTpants [Big Grin]

It was nice to wake up and read this, this morning. [hi]

quote:

It will be hard for the ID idiots to be on the panel if they are tainted in the brain at all toward the "no chronic Lyme" hog wash. That is why there is a close watch on them that has been built into the settlement agreement.

The thing that causes me concern, with all of this, is that IDSA gets to make the selections & they are only REQUIRED to make certain that there are NO existing, determinable conflicts of interest.

As far as I know, that doesn't mean that they can't have untraceable conflicts or "mental" conflicts.

If ILADS was charged with screening and selection, they would make sure that participants were capable of reviewing the evidence objectively.

These will STILL be IDSA's guidelines and IDSA still gets to make the panelist selections.

I'm glad to know that there is at least one item that can most definitely be torn down, BUT can't they just alter that one item and say....

"OK, now they've been fixed, and they are BEYOND any possible question. None of the deviates, that have embarrassed us, participated and a "professionally-certified conflict-free" panel approved them."

I'm hoping that they will not be able to be used to deny longer treatment durations, since there don't seem to be any published studies of sufficient length. (As the turds had cut their studies short and, for some reason, Fallon only used 12 weeks too [Frown] )

WE NEED THOSE STUDIES TO BE DONE!!!!
We also need studies to be published for different combinations of ABX, including cyst-busters.

I hate to be spreading doom & gloom, but IDSA allowed these jerks to write & re-write these guidelines, in the first place. You KNOW they are going to use whatever dirty tricks they can come up with to try to make this work in their favor.


On another note......

Have you ever received any e-mails from me?

I have sent several over the years and NEVER have gotten a reply.

If you have replied, maybe I need to try to figure out why I'm not getting them.

I realize that you are very busy and get A LOT of e-mails, so I've figured that you might not have gotten around to answering me, EVER.

I AM beginning to get a complex, but I'm hoping there's some other explanation besides that you secretly HATE ME! [Wink] [bonk]

I sorta, kinda figure that you wouldn't put so much time into your replies to me on the board if you REALLY didn't sorta, kinda like me (at least a teeny bit) way down deep underneath all that tormenting & teasing. [Razz]


What gives? [confused]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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pmerv
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We are working on this and the AG is watching. The panel is not the only thing. There is also a public process.

--------------------
Phyllis Mervine
LymeDisease.org

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AliG
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Thanks pmerv! [Smile]

That IS helpful to remember.

At least, if they DO try to pull something dirty, we will have had the information that they ignore and deny exists brought to light, IN A PUBLIC FORUM!! [Big Grin]

It's a shame that they have made so many very ill people afraid and VERY distrustful of the mainstream medical establishment, the very people who SHOULD be trying to help them. [Frown]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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pmerv
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We know what they will do, or at least the kinds of things that they will do, because they have been doing them all along. Eternal vigilance is the price of liberty! At least we have some very smart people at the top. We don't know what the outcome will be, but we are giving it our best.

--------------------
Phyllis Mervine
LymeDisease.org

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AliG
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I appreciate all who are looking out for us.
I'm very glad that we have our smart people up there. [Smile]

I just feel like I have to blurt out my fears in case someone else hasn't thought of it already, even though I know it's not very likely. [Roll Eyes]

It also helps to get the reassurance from time to time. Then I don't have to stay up nights worrying about it. [kiss]

I watched "Under Our Skin" again last night & it really makes me want to kick that worm in the teeth. [shake]

Thanks for all you do pmerv. I appreciate your efforts on behalf of the rest of us. [group hug]

[hi]
Ali

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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canbravelyme
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Could someone please post a link to the guidelines for public submissions?

Also, our highly competent TC I take it will post in Medical at the top of the page a month in advance so that we can all prepare submissions.

I recall there will be public internet viewing of the proceedings. Do I recall correctly that there will be public forums where we will state our cases in person?

Best wishes,

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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pmerv
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Go to the CALDA website www.lymedisease.org and click on news on the far righthand side.

--------------------
Phyllis Mervine
LymeDisease.org

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cjnelson
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Where are things in respect to the new panel and meetings?

--------------------
Seeking renewed health & vitality.
---------------------------------
Do not take anything I say as medical advice - I am NOT a dr!

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slappy2779
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I know this is hard, but we're at the point right now where we have to trust things are going to be handled correctly.

I know it's hard considering we all have been treated like idiots, extremeists or hypochondriacs.

But, we also have to be careful not to give the opposing "politicians and doctors" ammo. The last thing we need is for them to say "Look here we are trying to settle this for them, and they are still crying unfair!"

If we push to hard, then that's exactly how it will look. I totally agree with Tincup on this.

I know it's hard because we all have been treated unfairly, but now is the time where patience will win out. [Big Grin]

--------------------
C.D.C = "Country Doesn't Care"
Ticks are like Snipers, you don't know they're there, until you see the bullseye.

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