posted
I am withdrawing this petition because we have gotten information about letter writing, etc that will do what we wanted: protest the composition of the panel.
Leaving the thread, though, because it does contain some thoughts that might be used by letter writers.
Apparently there is a new petition in the works, and when it is made public, I will delete this thread so there is no confusion.
OK, here is possible petition language. It might need to be pared down. I feel that ILADS might have to go along with this procedure but the patients don't. We have a dog in the fight and a right to have our say. Other petitions have already covered the points about lack of care, failed diagnosis, etc. Those petitions are still around if anyone wants to present them (and probably should).
So, this proposed petition is focused instead on the composition of the panel that was chosen. It is heavy on people who have already expressed IDSA type views on lyme treatment and are obviously biased from the get go.
If we play by their rules, we will lose. That is the take home message from years of lyme activism. I think we should ignore anyone who comes along and tells us to be good little children and sit quietly while we are being destroyed.
So, here is the wording. What do you think? If we can agree on the wording, maybe someone who suggested the survey/petition website can help get it on there. Then it can be printed and presented at the public meetings with the panel.
This might need its own thread on lymenet and duplicate posting on forums that get more eyeballs. And doesn't that say something, that off topic is more read than activism?
------------------------------------------------
OBJECTION TO THE IDSA PANEL BY LYME PATIENTS
Lyme patients have a stake in the outcome of this panel review and we feel that, as presently constituted by the IDSA, it will merely rubberstamp the previous guidelines. Too many of the selected panelists are already aligned with the Infectious Diseases Society of America, and are known to subscribe to IDSA's views on diagnosis and treatment for Lyme disease and its coinfections. Meanwhile, doctors who have successfully treated thousands of patients were excluded.
This will result in a failure to ensure fair review. If lyme doctors are excluded, then anyone with infectious diseases ties and known biases should have been excluded too.
The panel is not considered to be impartial by lyme patients, because of the presence of members who will support IDSA views regardless of what the medical literature says. Lyme patients will continue to have great difficulty in getting adequate care after a biased review. In fact, it will probably be even worse than in the past.
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[ 02-10-2009, 10:53 AM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Sitting around like good little children is not the way to go.
This petition is a great idea. The language is simple and clear, and it gets directly to the heart of our concerns. Clearly, the panel is not fair minded. In my opinion, Lyme *patients* need to be heard separately from (and in addition to) organizations and activists. If a petition like this is presented at the public hearing, filled with patient signatures, it will at least become part of the record. How can that be bad?
The changes we want are largely up to us. As sick as we are this may not be fair, but, unfortunately, it is the way it is.
Every voice helps.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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I think it's wonderfully written. Also, I couldn't agree more as I was wondering the same thing a few days ago.
They have NOBODY on that panel that has actually treated of seen what Lyme can do! How can they set any guidlines without having a LLMD on the panel????
Would they attempt to set quide lines for Aids without an Aids specialist to consult, or join the panel????
What about West Nile Virus, are there guidlines for the treatment.
It is just plane common sense that you cannot set the guide lines for any disease without consulting as expert in that field!!!
Not to mention all of the scientific evidence, studies by will know Universities, etc.... that where NOT looked at, thrown to the side and ignored that supported Cronic Lyme, Length of Tx., and Congenital Lyme!!!
Sorry to rample, it's just so frusterating to see so called 'experts' not even using simple common sence!!!
Posts: 351 | From Georgia | Registered: Feb 2008
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bettyg
Unregistered
posted
lou, i'm going to break it down for NEURO folks like me, so nothing important gets by us ok! xox betty
would you eliminate the BOLD and just have it regular print? painful for my lyme eyes
quote:Originally posted by lou:
------------------------------------------------
OBJECTION TO THE IDSA PANEL "SELECTION" BY "CHRONIC & CO-INFECTION" LYME PATIENTS
Lyme/"co-infection" patients have a stake in the outcome of this panel review and we feel that, as presently constituted by the IDSA, it will merely rubberstamp the previous guidelines of 2006.
Too many of the selected panelists are already aligned with the Infectious Diseases Society of America, IDSA, and are known to subscribe to IDSA's views on diagnosis and treatment for Lyme disease and its co-infections.
Meanwhile, "chronic LLMD, lyme literate medical" doctors who have successfully treated thousands of patients were excluded. "This is unacceptable to us!" THEY MUST BE INCLUDED IN THIS NEW PANEL FOR EQUAL TREATMENT!
This will result in a failure to ensure fair review.
If "our chronic" lyme literate doctors are excluded, then anyone with infectious diseases ties and known biases should have been excluded too!
The panel is not considered to be impartial by "we lyme/co-infection" patients because of the presence of members who will support IDSA views regardless of what the medical literature says.
Lyme patients will continue to have great difficulty in getting adequate care after a biased review.
In fact, "we feel" it will probably be even worse than in the past.
"Because of the way we feel the new panel's outcome will be, the CDC will not change their web site showing they continue to support IDSA guidelines as is.
Meaning, those of us treated by chronic LLMDS, our expenses will continue to be denied by our health insurance companies as has been presently happening for years!
The two major points we want changes are these:
1. Our chronic LLMDS having a voice in our treatment guidelines since they are the ones treating us with long-term antibiotics and alternatives.
Your panelists have knowedge of IDSA's 3-week antibiotic maximum only, and that jeopardises our health.
Their present lyme guidelines will result in more DEATHS of lyme patients since we are being undertreated as is.
2. We want CDC to recogonize our LLMDS treatments and therefore, forcing our health insurance companies to "pay their fair share" of expenses for our appointments, meds, treatments, labs, etc.
We look forward to our direct input being USED and the panelists currently selected be NARROWED down again eliminating all with IDSA connections! Thank you!!
Name_______________________________
City/State_______________________________
COMMENTS_______________________________
lou, as you can see, i added a lot to this and used my former legal secretary background when doing so.
i hope others will read my NEWEST version using all of what you had and more of mine.
We can refine this more. We want it to say EVERYTHING in ONE petition; so let's make it WORK for us now!
Thanks LOU for your putting pen to pc and writing this on behalf of ALL of us. bettyg, iowa activist
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sounds great. I'm in.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
i am new to all this and esp. the activism area.
i am an rn unable to work and have found this unbelievable the amount of fighting btwn the medical community
leave it up to me to get dx with the current medical "hotbed"
what i am wondering is if there is a way to state the specifics of who is on panel..ie:
there are x amount of known ISDA doc and y amt. of others??? pardon my ignorence on this as i said i am new and do not know the specifics of this new panel
all i know is this panel is supposed to "review/revise" the guidelines i think
jjust wondering if there would be a specific way to put things that are factual in numbers??
hope my question makes sense..just thinkin
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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bettyg
Unregistered
posted
my3boys,
please read this link for more details and it will tell WHO the 14 people are and background our members have dug up on each of them.
posted
Lou, I am wondering if there should be wording about better definition of conflict of interest and the fact that so many of the panelists can be shown to have such ties? Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
Good work, Lou and Betty - I like the combo petition - stating what we do not like and what we want.
Since we'll be dealing with a 75% vote on the guideline issues, am wondering if we need to do a count of the panelists who are clearly allied with the IDSA at this point,
and mention this percentage as part of the petition, that we are concerned that this indicates a bias that will simply rule in the IDSA favor no matter how much testimony is submitted,
and that the panel membership has not been balanced with LLMDs with Lyme/co testing/treating experience.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
betty g: thanks for the link,info. appreciate you
taking the time!! is this something that
needs to be done as a group or individually??
working on reading the acutal "agreement" as well
as links. sounds like they have to "consider"
new info. presented?? still working thorugh it
is so, couldnt the atty general be sent list of
research since 2006 supporting chronic lyme to be put in for panel condiseration??
and seems like to respond with the biased percentage on panel needs to be pressed upon!!
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
I agree that we need a petition.
First -- who is usually on panels like this? I can't imagine that AIDS, malaria, TB, etc. guidelines are formulated by people who specifically DON'T treat these diseases. If I'm right -- can we point out that the LD panel as proposed is NOT within normal panel guidelines?
Second -- I'd like to see it start off with a positive statement of what we want, and why.
Something like:
To ensure that guidelines for Lyme and other tick-borne diseases reflect the most current research and and the best diagnosis and treatment practices, experienced physicians with a significant caseload of Lyme disease patients and a minimum of 5 years experience in working with Lyme patients must be included in the new Guidelines panel.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
OBJECTION TO THE IDSA PANEL SELECTION BY "CHRONIC & CO-INFECTION" LYME PATIENTS
To ensure that guidelines for Lyme and other tick-borne diseases reflect the most current research and and the best diagnosis and treatment practices, experienced physicians with a significant caseload of Lyme disease patients and a minimum of 5 years experience in working with Lyme patients must be included in the new Guidelines panel.
Lyme/co-infection patients have a stake in the outcome of this panel review and we feel that, as presently constituted by the IDSA, it will merely rubberstamp the previous guidelines of 2006.
Too many of the selected panelists are already aligned with the Infectious Diseases Society of America, IDSA, and are known to subscribe to IDSA's views on diagnosis and treatment for Lyme disease and its co-infections.
Meanwhile, chronic LLMD, lyme literate medical doctors who have successfully treated thousands of patients were excluded. This is unacceptable to us!
THEY MUST BE INCLUDED IN THIS NEW PANEL FOR EQUAL TREATMENT! This will result in a failure to ensure fair review.
Please note that $10,000 requirement was NOT in the original requirements for those to be on this new panel reviewing 06 lyme guidelines! It was added after the fact!
If our chronic lyme literate doctors are excluded, then anyone with infectious diseases ties and known biases should have been excluded too!
The panel is not considered to be impartial by we lyme/co-infection patients because of the presence of members who will support IDSA views regardless of what the medical literature says.
Lyme patients will continue to have great difficulty in getting adequate care after a biased review.
In fact, we feel it will probably be even worse than in the past.
Because of the way we feel the new panel's outcome will be, the CDC will not change their web site showing they continue to support IDSA guidelines as is.
Meaning, those of us treated by chronic LLMDS, our expenses will continue to be denied by our health insurance companies as has been presently happening for years!
The two major points we want changes are these:
1. Our chronic LLMDS having a voice in our treatment guidelines since they are the ones treating us with long-term antibiotics and alternatives.
Your panelists have knowedge of IDSA's 3-week antibiotic maximum only, and that jeopardises our health.
Their present lyme guidelines will result in more DEATHS of lyme patients since we are being undertreated as is.
2. We want CDC to recogonize our LLMDS treatments and therefore, forcing our health insurance companies to pay their fair share of expenses for our appointments, meds, treatments, labs, etc. just like patients with cancer, AID/HIV. EQUAL treatment.
We look forward to our direct input being USED and the panelists currently selected be NARROWED down again eliminating all with IDSA connections! Thank you!! [Smile]
Name_______________________________
City/State_______________________________
COMMENTS_______________________________
using minoucat's new remarks, i've shown them at the top, and left lou's/my comments and I'LL REMOVE MY "" where i added things earlier so it flows better ...
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bettyg
Unregistered
posted
also, liked minou's comment about specific info being included!!
please show the links there and we will incorporate them ok! GROUP EFFORT
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posted
Lovely so they've accepted even more bribes I see. The thought of going to hell just doesn't scare some people. Does anyone know what LLMDS applied to be on the board? It looks like IDSA will never do their job so I'm wondering if anyone has any ideas of how to spread the word to the world that anything IDSA says or publishes isn't credible? At some point in the past they became a standard organization to reference. There just has to be a way to reverse that. Maybe it would take a ton of lawyers bringing all of the corruption to the surface (Erin Brokovich) or maybe there is a cheaper way.
I'm just writing to stir up some ideas possibly, because they clearly won't change and will never do their job. Are there any lawyers around here?
Posts: 499 | From Indiana | Registered: Oct 2007
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I personally think it's getting too long and complicated. I would go back to the original language, maybe add in a point or two, demonstrate the panelist's bias perhaps with statements that have been made. Then leave it at that. More words and bigger words does not always make something better.
Just my nickel. Take it or leave it.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Great idea. So we sign it, then what do we do with it??? Do we mail it? & to whom?
Will keep checking back here for more info.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
posted
Here's a possible outline of the points we would like to make in a petition(without me filling in all the details mentioned above):
1)When medical treatment evaluations take place, they are usually made by those most experienced in treating those with the disease being evaluated.
2)However, the current IDSA guidelines evaluation panel is comprised only of those who basically do not have experience treating sick patients - in fact, many of these individuals have a bias against adequately treating sick Lyme/coinfection patients. If left as such, patients will be left inadequately treated and without adequate insurance coverage, and doctors will continue to be persecuted for treating Lyme/coinfections patients and afraid to treat at all.
3)Therefore, in this petition we the undersigned are asking for redress, specifically that experienced Lyme-treating physicians be on the IDSA guidelines evaluation panel, and specifically those who have been connected with ILADS, the experienced Lyme/coinfection medical association, in the hopes of recognition for
4)the need for adequate recognition, testing, treatment and insurance coverage for people with Lyme disease and coinfections, and that Lyme-treating doctors will be safe from harassment by medical boards and insurance companies to pursue the clinical treatment they think best for the health of their patients.
Does this cover our basic talking points or are there others that people want to include?
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
bettyg
Unregistered
posted
this is getting too confusing; i'm going to ask bea siebert to pm lou b and showCLOSED on her post since lou started the ball rolling on having a lyme petition in draft above.
i just got done posting over there on another suggestion by robin, and i'll show that below.
then i get over here and MORE comments not shown in other one. that's why i harp on having ONE POST ONLY and ALL REPLIES go in there or we are lost.
LATEST REVISION USING ROBIN'S GOOD SUGGESTION ON SHOWING THEY MUST PRACTICE ILADS GUIDELINES AND BE AN ACTIVE MEMBER!!
OBJECTION TO THE IDSA PANEL SELECTION BY "CHRONIC & CO-INFECTION" LYME PATIENTS
To ensure that guidelines for Lyme and other tick-borne diseases reflect the most current research and and the best diagnosis and treatment practices must be included in the new Guidelines panel:
.. experienced physicians who are members of ILADS,
.. who practice International Lyme-Associated Disease Soceity, ILADS, 2008 LYME GUIDELINES,
.. with a significant caseload of chronic Lyme disease patients and
.. a minimum of 5 years experience in working with chronic Lyme patients.
Lyme/co-infection patients have a stake in the outcome of this panel review and we feel that, as presently constituted by the IDSA, it will merely rubberstamp the previous guidelines of 2006.
Too many of the selected panelists are already aligned with the Infectious Diseases Society of America, IDSA, and are known to subscribe to IDSA's views on diagnosis and treatment for Lyme disease and its co-infections.
Meanwhile, chronic LLMD, lyme literate medical doctors who have successfully treated thousands of patients were excluded. This is unacceptable to us!
THEY MUST BE INCLUDED IN THIS NEW PANEL FOR EQUAL TREATMENT! This will result in a failure to ensure fair review.
Please note that $10,000 requirement was NOT in the original requirements for those to be on this new panel reviewing 06 lyme guidelines! It was added after the fact!
If our chronic lyme literate doctors are excluded, then anyone with infectious diseases ties and known biases should have been excluded too!
The panel is not considered to be impartial by we lyme/co-infection patients because of the presence of members who will support IDSA views regardless of what the medical literature says.
Lyme patients will continue to have great difficulty in getting adequate care after a biased review.
In fact, we feel it will probably be even worse than in the past.
Because of the way we feel the new panel's outcome will be, the CDC will not change their web site showing they continue to support IDSA guidelines as is.
Meaning, those of us treated by chronic LLMDS, our expenses will continue to be denied by our health insurance companies as has been presently happening for years!
The two major points we want changes are these:
1. Our chronic LLMDS having a voice in our treatment guidelines since they are the ones treating us with long-term antibiotics and alternatives.
Your panelists have knowedge of IDSA's 3-week antibiotic maximum only, and that jeopardises our health.
Their present lyme guidelines will result in more DEATHS of lyme patients since we are being undertreated as is.
2. We want CDC to recogonize our LLMDS treatments and therefore, forcing our health insurance companies to pay their fair share of expenses for our appointments, meds, treatments, labs, etc. just like patients with cancer, AID/HIV. EQUAL treatment.
We look forward to our direct input being USED and the panelists currently selected be NARROWED down again eliminating all with IDSA connections! Thank you!! [Smile]
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I think Robin's language is all we need.
I agree with muscles that anything longer becomes too complicated. We need a spearhead.
Once we come to a consensus, I'll figure out how to post on the petitions website.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
Well, the reason I kept it to one point is that it is the only one that has not been made in previous petitions. There have been two in the past 10 years that had more than twenty thousand signatures. They covered the other points people have mentioned in their suggestions. These petitions should be presented in my opinion, along with other patient-generated input.
ILADS is going to have to go along with the current selection of panelists, because the so-called ethicist passed on them. And I don't think we will get this changed either. But someone has got to blow the whistle on the rigged nature of the selection. And patients are the only ones who are not bound by any sort of agreements on how this would be handled.
The point of this is to call a spade a spade and register this complaint during the process. It might shame them into doing the right thing, although I doubt it. But it gives us credibility afterwards when the guidelines are just rubberstamped, because we made an objection at the time.
If legal action were to occur after the panel fails to do an honest job, it would also be useful to have this protest on record. That way no one can say there was no objection.
ILADS has issued a press release objecting to the absence of lyme treating doctors. But the IDSA will point to the ethicist ruling that they had financial conflicts.
I will be posting some background on guidelines preparation, the compostion of the panel, and criticisms of guidelines in general.
I am not sure there is really time to get a lot of signatures on this petition. Whoever suggested the website for petitions, can you come back and help us? If there were not an adequate number of signatures, we could still have someone express this point of view along with related things at a public hearing.
The patients are stakeholders. They do not need to duplicate the efforts of the professionals who are collected medical literature for the panel to survey. What they can do is express the patient point of view. We have this right.
Posts: 8430 | From Not available | Registered: Oct 2000
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I'm here Lou. PM me and I will set up the website tomorrow AM.
I'm amenable to your post.
However, I do believe:
"Meanwhile, doctors who have successfully treated thousands of patients were excluded."
Requires clarification:
"Meanwhile, physicians who have successfully treated thousands of patients, and reject the IDSA view that Lyme and tick-borne co-infections are easily treated with short course antibiotics, were excluded."
Consensus?
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
"Meanwhile, physicians who have successfully treated thousands of patients, and reject the IDSA view that Lyme and tick-borne co-infections are easily treated with short course antibiotics, were excluded."
Yeah.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
My question is: are we all to sign a complaint about what an IDSA-biased panel is NOT going to be able to do - ie, be able to render a fair review,
or, do we want the petition to include a statement on what we DO want, and then spell out what would be a fair panel?
My later statement(with 1,2,3, & 4 points) attempted to make an outline about what is to be expected for fairness, the problem, and the solution we're looking for.
Lou, I looked again at your original statement up there - it's pretty good for a complaint.
Maybe to add something about how evaluation is supposed to be done; either equal numbers of those persuaded to one view or the other for balance, or evaluation by those most experienced in treating, which are the ILADS doctors, or...?
This makes my head swim still.
Here's one more statement attempt:
This panel should have been comprised of panelists able to review all the literature on Lyme disease treatment. Experienced LLMDs associated with ILADS know long-term treatment works and know there is clinical experience to demonstrate as such. They should have been on this review panel in equal numbers.
Sadly, a panel comprised of only IDSA-biased individuals will not be able to accept research and clinical experience demonstrating treatment benefits from long-term care. They will not do justice to Lyme disease patients nor the doctors who treat them.
I also like a lot of the points Betty raised in her version.
So is this to be a short petition or a longer version with more in it?
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
news bulletin!! DON'T DO ANYTHING !!!
READ TINCUP'S LATEST POST; SOMEONE/LDA ?? IS WRITING A PETITION. read her other comments too.
new action is taking place; i'll copy her just posted link here!
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Good thing; I was just creating the petition!
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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bettyg
Unregistered
posted
lou, thanks; i was trying to prevent anyone from EXTRA ENERGY not wasted; so we could use on whatever OFFICIAL petition forthcoming! xox
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