posted
Most of these people are associated with infectious diseases and many have Harvard and Yale ties. I see little chance that they are going to give the medical literature a fair hearing and it is most unlikely that they treat chronic lyme disease.
So, anyone out there that has dug up prejudicial info on any of these people should be sure to send it on to lorraine, who is gathering it:
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
While I do not know anything specific about the doctor listed from Duke, Duke in general has been extremely anti-Lyme. I got into a heated editorial exchange with a Duke ID doctor who decided to take exception to a short article in a newspaper advising area residents to beware of Lyme Disease (which was actually a little AP article like you see all the time in newspapers). An editor loved the exchange and ended up assigning a reporter to do a story. The reporter did a 2 page article, pics and all, and featured the stories of area Lyme patients.
If you called Duke ID department to this day and ask if they treat Lyme Disease, they would say "no" and refuse to schedule an appointment.
That being said, I will see if I can find any info on this Duke doc.
Posts: 2276 | From NC | Registered: Oct 2000
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Interesting ... provided he isn't a "plant" from the powers that be at Duke. Looks promising, as long as he is able to offer HIS OWN opinion and not the opinion of OTHERS. Look at the title of the article listed at the end .. interesting - a comparison of malaria and babs. Gotta look that one up.
Paul M. Lantos, MD Departments / Divisions: Medicine / General Internal Medicine Hospital Medicine / Duke Hospital Medicine Program Pediatrics / Infectious Diseases Address: DUMC 100800 Durham, NC 27704
Office Telephone: 919-681-8263
Fax Telephone: 919-668-5394
Training:
MD, University of Connecticut School of Medicine, 2000
Residency:
Internal Medicine/Pediatrics, University of Connecticut School of Medicine, 2004
Fellowship:
Pediatric Infectious Diseases, Children's Hospital Boston and Harvard Medical School (Massachusetts), 2007
Clinical Interests: Hospital medicine, consultative general internal medicine for inpatients, medical education, tropical medicine and international health, malaria and other parasitic diseases, tick-borne diseases such as Lyme disease, mosquito-borne diseases such as encephalitis
Research Interests: Tropical and parasitic diseases, travel medicine, mosquito-borne diseases (including malaria, dengue, and encephalitis), tick-borne infections (including babesiosis, Lyme disease, Rocky Mountain Spotted Fever, and ehrlichiosis), HIV / AIDS, infections in immunocompromised hosts, and general infectious diseases of newborns and children.
Representative Publications: Krause PJ, Daily J, Telford SR, Vannier E, Lantos P, Spielman A. Shared features in the pathobiology of babesiosis and malaria. Trends Parasitol. 2007 Dec;23(12):605-10. (2007) Abstract
Posts: 2276 | From NC | Registered: Oct 2000
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Makes sense, don't put any experts on the panel.
Ya think they lined up a bunch of dermatologists for the panel for the American Heart Assoc? Now THAT would cause a public outcry.
What a shame... esp with the possible new health care system coming in, LLMD's will have even less leverage, if any at all.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'll spend the next few weeks researching each physician and organizing a summary report, as well as references to the sources in order to confirm their positions and bias.
One name at a time isn't too hard to do. I just spend two days doing each one, and I can probably go over just about everything.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
if you want background on these panel folks, go to ACTIVISM and read lynn shepler's post!! informative!!
many conflicts of interest and being IDSA members as well as infectious drs!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Wow.. you guys are great!
Look at all this come together, plans and ideas! I am overwhelmed!
I've been back and forth reading your comments all day.. and can't address everything tonight of course.. I am SO exhausted.... but..
I got a call a couple of hours ago... and there will be a press release coming out in the next day or two (if all goes well).. and some ideas on what can be done to get the most bang for our buck.
Some actions are NOT recommended.. for a bunch of good reasons.. and some are thought to be better for the cause.
Right now I was told that contacting the AG or the omnebudsman thingy, is not the best idea. There are good reasons that I will share more about later.
Your choice as to what you want to do though... but I am going to wait till all the big whigs have what they need (research/info) to make the best informed decisions.. and share that info before I take action.
BTW- I told them of your work here... and said it was bountiful to say the least! They were impressed and WILL be wanting it for review. So don't quit researching and posting.
Dig baby dig.
Thoughts are right now that someone will be collecting your research as it comes to light (assuming you don't mind of course)... and then a BIG fat letter will be headed to those who will hopefully pay attention and those who should see it.
quote:Originally posted by liesandmorelies: This is from the Lahey Clinic in Massachusetts. Dr. Chirini is an Infectious Disease Doctor there. I will send this on too.
This one will make your hand stand up on your neck!!!
I am in the process of filing a complaint against the lahey clinic ID dept. for their false advertising of being a Lyme competent hospital and that i was turned away despite being very ill with Lyme disease.
I will spare all the detail but i was seen on November 10th very sick with a positive Lyme test from Quest. i was told their stand is that anyone that takes 20 days of doxy should be cured of Lyme period, and if symptoms persist after that, than it is something other than lyme.
They ran no tests of their own, did nothing. This delayed me getting proper treatment and as a result i got sicker.
ETA: They all work as a team there. In addition, the Dr I saw at the lahey warned me that if i saw a particular well known LLMD in mass, that i would be seriously harmed by his treatment.
Posts: 14 | From NH | Registered: Oct 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Here is more information on Paul Lantos. Dr. Lantos wrote a chapter discussing his experiences that led him to medicine and the mini-bio is in-depth and personal. He is the survivor of holocaust victims from his family, and is quite impressive in his desire to help people.
Baker is biased and Pro-IDSA, - Her stance on vaccination with Lyrix as well as pro-vaccination in other areas is clear. She has led conferences which discussed "Lyme Disease physicians who treat patients for years with Ceftriaxone, and the societies conflicts associated with this group. She has published numberous reports on the government pub-med database indicating her position on duration of tick attachment, the effectiveness and accuracy of Western Blot and Assay, as well perpetually indicating that the bullseye rash is nearly always present, and if it is not, then Lyme Disease is not of concern.
Lantos is Unbiased, -- History of intense interest in vector borne diseases of all types, ranging from tropical diseases: malaria, etc, through Lyme Disease and tick-born infections. His history suggests a personal desire to help people, and he has an intense interest in protecting and healing children.
Charini is Pro-IDSA. Patient reports indicate that he's a semi-effective clinician who sometimes hits and misses with his patients. Most patients however would not recommend him to their family members.
Manuel Moro, DVM, MPH, Ph.D. appears to be pro ILADS, with fundamental research and discussions at lectures alongside multiple researchers who have discovered aspects of Lyme and co-infections that cause Chronic Disease and persistent.
I'm going to collect all the sources and piece together and summarize why it is clear they are leaning to one side or the other, or are center and unbiased.
These are very vague reports. I am only searching for names, addresses, phone numbers, specialities, and interests right now. I am not researching indepth, so any information is things I stumbled across "before" I've actually started digging for actual facts.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Brian, we should talk! After all, look at my signature!
I've talked to many patients in the past few years have been neglected by the doctors at Lahey; some cases were incredibly negligent.
Even when found positive by EM (rash) and blood tests, patients wil get a few weeks of doxy; sometimes four weeks.
I've written the CEO there complaining about the specifics -- but nothing changed. I did get a nice letter from their "patient advocates" explaining their concerns...but the neglect continues.
It is very interesting how much detail Lahey puts on their web site now - complete with photographs of infected blood cells! Very odd, given their crappy diagnostics and treatment guidelines.
Sorry to hijack the thread. PM me if I can help.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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I think I opened pandoras box. I agree with Tincup that we should sit tight and keep digging. Get our ducks in order.
It's amazing what you can find when you look through the magnafying glass.
You guys are the best.
Sometimes I sit here with this disease and the whole thing seems so sureal. I can't believe that we have to deal with all this nonsense let alone the symptoms of this horrible disease to boot.
I am encouraged by what I am seeing here though.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ok, I'm almost done with the summary list. It was actually easy to get most of their e-mail addresses and positions, but now the hard part is documenting "everything" to prove it, which will take days.
Weinstein is perhaps the most outspoken of the new panel regarding his bias. On so many levels he's expressed the standard IDSA perspective. However, it's the dogmatic way in which he expresses it which clearly indicates his mind has already been made up, regardless of the research indicating otherwise.
He said this on the New York Medical College website:
"Over the years, testing for Lyme has become controversial, which disturbs Dr. Weinstein. Since he was a member of the committee that developed the standards for Lyme testing--now referred to as the Dearborn criteria and used throughout the nation--he is especially perturbed when the tests are maligned as unreliable. "What is unreliable is the interpretation of results by doctors and patients," he claims. "A patient can have nine negative tests and then one positive one and the diagnosis is mistakenly confirmed...The best test would be to culture the bug, like you do for a urinary infection. But the Lyme bug is slow growing and you have to decide whether to treat or not before the culture is finished. Besides, the lab test to grow the bug is not very sensitive and too many patients have negative cultures of the skin or blood for it to be a routine test."
Then he says:
But overall, 70 to 80 percent will have a positive test one to two months after being infected, says Dr. Weinstein, and in late Lyme arthritis, the test is virtually always positive months after the infection.
The studies he performed: Double Blind Placebo trials referenced and relied heavily on panelist members research from the "Prior IDSA" panel. He also worked with Mark S. Klempner, M.D on a major NIH study well known, extremely well known to be a pro-IDSA advocate.
He also worked with Yale-New Haven Hospital in Connecticut (Janine Evans, M.D. She was involved in studies referenced by the IDSA in creating their guidelines. A study called:
The consequences of overdiagnosis and overtreatment of Lyme disease: an observational study. Ann Intern Med 1998; 128:354-362.
She was also involved in another study used by the IDSA panels original guidelines called:
Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 2001; 345:85-92.
I also found this -- just for kicks, on the IDSA guide site. They sure do spend a lot of time trying to get Chronic Lyme Disease laws blocked.
Advocacy Efforts
IDSA Sends Letter Opposing Lyme Disease Legislation in House and Senate 3/21/2008
IDSA Members Testify before the Pennsylvania House Health and Human Services Committee on Appropriate Treatments for Lyme Disease 11/15/2007
IDSA Sends Letters to the NGA and NCSL Regarding Problematic Lyme Disease Legislation 08/07/2007
IDSA Urges the Massachusetts Joint Committee on Public Health to Oppose House Bill 3768 07/12/2007
IDSA Sends Letter Urging Maine Legislators Urging to Invite Board-Certified ID Physicians to Testify at Lyme Disease Hearing 07/03/2007
IDSA Sends Letter Urging Rhode Island State Senators to Amend Joint Resolution 5676 06/19/2007
IDSA Urges Pennsylvania State Senators to Oppose Enactment of Lyme Disease Legislation 04/10/2007
IDSA Sends Letter to Educate Members of Congress on our Lyme Disease Guidelines 01/07/2007 Articles
IDSA Stands Up For Lyme Disease Guidelines Summer 2007
IDSA Releases Updated Lyme Disease Guidelines Fall 2006
IDSA Works to Inform Public About Lyme Disease Summer 2006
[ 01-29-2009, 01:06 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I noticed the same thing. The IDSA is doing everything to block these bills. They will never admit they were wrong and are all covering their butts. WHY????
Instinctively, I do beleive the only way in the long run that we will win this is to go around them. The more and more ppl that get on board with what we are trying to do will really help.
Also, it's funny that Weinstein does not tell the truth about the nine tests that are negatvie. Those are usually the 9 that are the baisic elisa(they don't do the western blot) unless the basic is positvie and lets not even talk about all the bands they removed. why did they remove those? GEEZ
Good work!!!!
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi,
I also find this process to be a travesty.
Who will be testifying at the hearings? Do we know how many ILADS MD's will be testifying? Can we testify???? How are the people testifying chosen??
It is vitally important that alot of solid information is presented showing how many people have required long term Rx to recover.
In reading the review information on the IDSA site it says, "IDSA guidelines-like all medical societies' guidelines-are voluntary.They are for the benefit of physicians seeking the best possible advice from experts in the field."
Now, I ask you...how can the guidelines contain the best possible advice from experts in the field if they are not set by THE BEST EXPERTS IN THE FIELD....notably the MD's who treat thousands of lyme patients???
If the MD's who treat the most patients are not highly involved in the process and not included on the panel who votes on all changes, then the chances of getting the best advice from the best experts is very low.
It also says in the IDSA article that Howard Brody, MD PhD was jointly selected by the Office of the AG and IDSA as an Ombudsman. He will have a LIMITED role focusing on screening potential conflicts of interest. He will have no involvement in the operation of the panel. Only ONE person with a LIMITED role, will focus on screening for conflicts of interest!!!
It seems that the IDSA president has already determined that questions about the guidelines will be put to rest. He says so in the article!!
He also writes that, "The IDSA Lyme disease guidelines recommend against long-term antibiotic therapy, an unproven and potentially dangerous treatment. A small group pf physicians outside the medical mainstream and their patients endorse such long-term treatment, despite the compelling medical evidence that it is ineffective and can have serious life threatening complications-and, furthermore, is extremely expensive."
Now...doesn't that just get your dander up???
A small group of physicians and patients...?????
They need to see all the signatures of all the LLMD's and their patients, and they need to hear our voices!!!!!!!!!!!!!
We must find the best and most effective way to make sure that we are all heard....especially lots of testimony from LLMD's who have treated thousands of us!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
wow, you folks have been busy researching!! what a team effort.
tc, i edited my other post removing comment about contacting ombudsman, etc. BEFORE you posted latest news here from shiela....
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Whoa!
I feel like someone that has had a piece of candy
Dangled in front of my face,
Only to be eaten by the one holding it!
Is this panel just another front for the ongoing
Monopoly of the Holier Than Thou IDSA and Insurance companies?
It makes me sick.
I am ready and willing to take whatever actions necessary
To thwart this mockery of an "objectve" panel.
I will continue to watch and monitor.
I am looking forward to taking action when the time is deemed right.
(We shouldn't have to).
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Metallic Blue - thx for your great work! Just to let you know, Dr. Weinstein is no longer on the panel list.
Posts: 13171 | From San Francisco | Registered: May 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Robin, where did you confirm this? And do you know who else is on the list?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ok, I'm done with the summaries. Here are the preliminary results.
All e-mail addresses were found for all panel members (except Weinstein, who is apparently assumed to no longer be on the list (I must confirm it up the chain)
All phone numbers were found
All addresses were found
All specialities were found
All interests in research of conditions found
All subjective indications of bias/non-bias/unknown-bias were defined after extensive research. More research may alter the "unknown" individuals, and there is a very low probability of altering those with known bias for either ILADS or IDSA given statements they have made or research they have conducted.
Now the data on subjective recognition of what I've seen in the research on Chronic Lyme Disease or persistent borrelia burdorferi infection must be cross referenced once more to confirm the status of each members "assumptions, or bias" based on their stance on traditionally held values of prior IDSA guidelines or prior ILADS guidelines. If the individual falls in neither category and has never worked on cases of Lyme Disease -- I "presume", though can't prove, that they are unbiased nor pro-IDSA/ILADS, and thus are listed as unknown. Those who are unbiased are those who have neither made statements for or against IDSA or ILADS notions of the disease, but who have done research on Lyme Disease, and continue to "openly" confirm that they don't know the answers but are still in process, thus they are confirmed as unbiased.
Here is the preliminary list of bias and the physicians specialities and interests. I will not provide any other information on the physicians, that data will be supplied to the lead advocates handling the proactive advance to ensure this panel dose not proceed with the bias of the prior IDSA panels without balance.
Dr. Carole Baker Pediatric Infectious Disease Vaccination, Group B streptococcus Pro IDSA
Dr. William Charini Infectious Disease & Internal Medicine HIV Pro IDSA
Dr. Paul Duray Dermapathology Lyme Disease, Cancer/Lymphoma Unbiased
Dr. Paul Lantos Pediatric Infectious Disease & IM Vector Born Disease Unbiased
Dr. Gerald Medoff Infectious Disease histoplasma capsulutum, Candida, mycoes Unknown
Dr. Manuel Moro DVM, MPH, PhD Infectious diseases/zoonoses Tick Born Disease Pro ILADS
Dr. David Mushatt Infectious Disease HIV & Mycobacteria Pro IDSA
Dr. Jeffrey Parsonnet Infectious Disease HIV, Sepsis, Toxic Shock Pro IDSA
Dr. John Sanders Infectious Disease Vector Disease, traveler's diarrhea Unknown
Dr. Arthur Weinstein Rheumatology Lyme Disease, Lupus, Gout, Pro IDSA
All data has been collected with an unbiased point of view on my part. Data is only compared once more, in contrast to IDSA guidelines or ILADS guidelines, or neither.
Example: A physician states that Lyme Disease is cured in almost all case with a short course of antibiotics regardless of whether they have late stage Lyme Disease or Acute Lyme Disease
This physician would of course be listed as a pro-IDSA individual.
Example: A physician states that Lyme Disease is treated based on a clinical diagnosis. Test results are tools that help in supporting the diagnosis, but unreliability in the available testing requires a full patient history, test results, objective clinical presentations including rash, swollen joints, bells palsey, or subjective complaints which have not been adequately diagnosed inspite of widespread testing. Antibiotic treatment will be used to gauge whether the patient has a Herxheimer reaction or reports improvements. Brain SPECT scans and further Western Blot testing may be used through a specialty lab that works with Tick-Born Illness.
This physician is obviously follows a pro-ILADS position.
Example: Physician lectures with both IDSA and ILADS physicians, and discusses the "unknown" aspects of what is seen objectively through scientific testing, experiments and so forth. "I see patients with a particular array of abnormalities in tissues. I have found Spirochettes within tissues in acute cases but I have not seen them once the patient is treated with Antibiotics, however that doesn't mean they aren't there, we are still in the midst of understanding this complicated disease."
This physician is obviously unbiased, and neither supports the IDSA position nor ILADS position.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Page 8, B Must not have previously published a particular viewpoint on lyme disease diagnosis or treatment.
I'd save all the documents that you find to your hard drive. I expect as soon as they get wind of this they will remove as much info from the internet as they possibly can if they haven't already.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
More work done. GREAT! I will try to read it all soon.. probably not tonight. But do know your work IS being noticed!!!
I just learned an update will be out shortly that will answer some of your questions.. hopefully tonight.
As soon as it is available.. I will post it on a new post. This one is getting sooooooo long! That's good though! Keep it up!!!
posted
Metallic, Phyllis Mervine, pres of CALDA, said so in two threads in Activism: in the CALDA's New Blogs thread and the Update on IDSA Guidelines Review Panel one, that Dr Weinstein is no longer on the panel.
Posts: 13171 | From San Francisco | Registered: May 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thank you Robin. Now, onto further research to support bias based on playing by their rules.
quote: The ethicist did not consider short term treatment bias (e.g. "IDSA speak") as a ground for exclusion from the panel.
This is going to be hard to work with. If a physicians behavior and thought process agree with the currently flawed guidelines of the IDSA, then It's going to create a vacuum and objective and subjective truth will be obscured and easily manipulated. Working around such obstacles while difficult, should be something I can do. They gave us enough "rules" where we should be able to pin down enough conflicts of (COI). or Unbiased views.
The interesting irony here is that we're now seeing the stark contrast between tangible conflicts of interest and philosophical conflicts, such as those of dogmatic fervor among scientists caught up in scientific revolutions.
I speak often here about Thomas Khune, who wrote "The Structure Of Scientific Revolutions -- a famous essay in which he discusses the mechanics of how science progress, and how the individuals who make up the community of scientists come to hold to, or move onto new theories as prior theories are unsustained by information.
Physicians gain bias and often cling to old theories in-spite of objective evidence to the contrary, as a consequece of having spent entire careers focused on their particular theory. Attachments form, and any opposition which betrays that dogma is met with disagreement, and resistence.
All theories in history moved through a scientific revolution in order that the be firmly established among the mainstream. To be widely agreed upon, this process must take place.
The stage of Tick-born illness: Lyme and associated diseases (including other vectors) causing the same illness -- are under heavy scrutiny now, as an entire theory is being challenged. The IDSA point of view is being challenged by new information which is constantly coming in.
As a consequence, those with bias, who are able to control the mechanisms of how the theory itself is sustained, can act in ways which rebuke studies in opposition. The dogmatic bias leads researchers to some unconsciously create studies that appear quite objective, but are already subjectively tainted by the facts they use to obscure the conclusion.
Examples of this are seen across nearly all the double blind placebo controlled trials that were done for Chronic Lyme disease. One single mono therapy was used in one case, or perhaps patients were selected with a control group having Fibromyalgia, etc. If patients actually got worse, it was seen as a failure rather than the potentiality of a patients healing crisis. Studies that were in danger of coming to conclusions that oppose the view point of the bias physician were sometimes "prematurely ended." to prevent a complete evaluation and understanding among peers.
And so, a very large portion of what we call "Bias" is being directly ignored and catogorized in exactly the same way Dr. Steere defined patients with "major and minor" symptoms in early Lyme Disease. Those who didn't have the rash, swollen joints, or late stage manifestions such as encephalitis, heart block, Endocarditis, or Facial Palsey, were seen as having "minor" problems, and were relegated to fitting outside the "Lyme Disease" diagnostic and treatment criteria. These patients could have severe cognitive deficits, intense neuropathy and pain, digestive abnormalities, and debilitating crippling fatigue -- to the point many were bedridden from symptoms, but they weren't included, because they were defined as "minor."
Defining parameters in such a way for a panel is no different than for the definition of a disease. However, again, if I'm forced to oblige that they've put a prisoner in charge of running the prison, I'll do my best to work with it.
I would feel the same way if they put all ILADS doctors on the panel. It would not be appropriate. Scientific objectivity is crucial, but so is scientific subjectivity and experience. The panel must be balanced in order for us to actually progress in formulating appropriate guidelines based on all of those accounts.
quote: The ethicist determined that Carol Baker did not have a conflict of interest and did not regard her organizational affiliation (past president IDSA) as a conflict.
Interesting. So, an individual who was given an award in over a number of years by her organization (2008 most recently) isn't going to be recognized as biased towards toeing the line for her organization, one that not only has she led, but that rewards her? Having been a past president who has conducted campaigns against physicians who treated patients outside the confines of the guidelines that she oversaw during her presidency in 2001, is a conflict of interest. Perhaps not financially, but philosophically. However, if I can't apply such logic, another route will be taken.
quote: The ethicist rejected physicians who derived more than $10,000 per year from treating Lyme patients from the panel on the basis of a conflict of interest.
This one is easier than people think. I know a lot of researchers who don't see patient, but who are doing a lot of research on Lyme Disease without bias -- who have come to multiple conclusions (Most of which indicate that they "don't know". Paul Duray is one example. Moro is another example, his Pro-ILADS perspective isn't a bias if the same rules apply that apply to the IDSA, because he's simply making statements, not actually inherently conflicted by the rules layed forth by the ethicist.
So, there are plenty of other researchers to replace conflicted members.
quote:
The settlement agreement does require that the panel be balanced. We believe that the panel cannot be balanced unless treating physicians are included in the panel and that the concept of bias (beliefs, opinions, predispositions) matters in this context.
Some treating physicians are on the panel, they just aren't heavily experienced, nor are they experts. There are also physicians who previously treated patients but no longer do. I agree with the philosophical aspect of bias as indicated above, however since they have already made a decision, we must work around it. We've got libraries, countless scientific journals, databases -- and an entire internet to scour for each individuals name. Finding facts in accordance with the agreement between the IDSA and AG should be possible if people take the time to look.
Let's get to work.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ok, here are the rules I'm applying from the agreement directly. I have broken down the agreement to only the factors that apply to us in researching the panel members. This information will help you understand what is and isn't relevant in your own report.
Break each down, research each and apply it to each panel members.
quote: CHAIRPERSON
1: Chairperson have been determined to be without any beneficial or financial interest related to LD, any financial relationship with an entity that has an interest in LD and any conflicts of interest.
Agreement defines conflict of interest as:
2: Financial/beneficial interest -- products, concepts addressed, competing products/concepts that might bias his or her judgment.
3: The cap chosen arbitrarily defining an interest in products or concepts in guidelines should not exceed 10,000, else may constitute bias.
4: No publication of a particular view in diagnosis or treatment
5: Knowledge must be present, though expertise unnecessary
6: Experienced in reviewing and interpreting literature (Med/Sci)
7: Complete tasks in timely manner/Consider varying points of view, bring groups of individuals to consensus.
8: Must not have served on "ANY" Lyme Disease guidelines panel (Including other associations, including Neurology, etc
Does Dr. Baker meet these rules. Some are purely speculative or subjective. Try to adapt the information based on your personal opinion of what is timely, argumentative/leadership oriented qualities, and unbiased perspective (perhaps use my prior definition)
quote: REVIEW PANEL MEMBERS
1: SPGC choose group "balanced variety of perspectives relevant disciplines, clinical experience in treating patients, as well as investigating best way to diagnose and treat it (and other ID's)
2: One M.D. must have clinical experience in treating LD patients.
3: Must not served on "any" LD panel
Do all panel members meet criteria set forth for the Chairperson and Panel Members
quote: PANEL OPERATIONS
1: Comprehensive search/retrieval of medi/sci literature.
2: IDSA must provide outside individuals/organizations an e-mail to collect info that will be given to/considered by review panel.
3: 60 day period precedes panel's gathering.
4: Open public hearing held w/ in-person review panel. Written/oral data on topic of LD.
5: All can apply, but clinicians/researchers have preference.
6: Divergent view points will be given time to present data.
7: IDSA can permit minimum of 2006 guideline panel members opportunity to present their view.
8: All conflicts of interest are "NOT" grounds for denial to present for oral/written presentation to panel.
9: Video broadcast live will occur on IDSA website.
Data for you the individual, or your organization to utilize in assisting to balance this panel and ensure it meets it's obligations.
quote: PANEL WEIGHING EVIDENCE
1: Decide whether 2006 LD GL med/sci justified with all data collected.
2: 75% majority for any conclusion by voting members.
The panel will decide on additional factors not listed that basically represent any changes that should be made to parts or all or none of the 2006 guidelines. This includes new information, whether the 2006 guide was "optimal" factors such as changes that alter quality of life etc, have any new relevant data need be incorporated etc.
quote: PAST & PRESENT FINANCIAL RELATIONSHIPS MUST BE LISTED INCLUDING:
1: Pharmaceutical,
2: Medical devices,
3: Biotechnology,
4: Medical consulting companies in which you or your immediately family have or had financial, equity, or intellectual property interests, currently and in the 2 years prior to date of collection of this letter.
5: Fees for consulting, speaker's bureaus, advisory boards, or committees, paid fees, direct or indirect to you or through university account under your control.
6: Stop options, patent rights of you or family in pharmaceutical, medical device/biotech companies. Patent numbers required.
7: Grants or contracts that provide salary support paid to you through institution or supports your research without salary support, currently in the 2 years prior to date of this doc. Only research related to Lyme Disease.
8: List government, foundation sources, name of private companies, names of individuals, partnership or trust or any entity related.
9: Insurance consulting and medical consulting contracts.
10: Estimate of percentage of your clinical practice devoted to diagnosis and treatment of patients with LD.
12: Estimate revenue of such services as last entry.
13: Did you serve in last 2 years, owner, officer, director, partner, manager, employee of any pharma, medical device or biotech comp?
14: Last 2 yrs, receive payment for advocacy role in gov, or non-prof org that could be reasonable considered related to LD.
All applicants must reveal all data pertaining to the above information. Try to gather all this information. See where they "actually" fall based on their history and accumulated data. Cross reference all family members, as well as panel members with the prior 2006 guidelines panel members. Degrees of separation can surprisingly turn up conflicts you would otherwise miss.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Yes, I think our best contribution at this point is to find statements that reflect diagnosis and treatment bias at the outset, and send them on to Lorraine for consideration. I am sure they are already hard at work, but there are many of us, and we could dig up useful info.
That 75% agreement number probably was what they were aiming at in their selection of panel members. Just ensure those panelists are in the IDSA pocket, and they are home free.
It is doubtful that anyone in the general public or from other sciences would think this process is fair and likely to do an honest job.
There needs to be a plan b.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lou is right.. and a plan B and C,D, E are in the works.
posted
Yay! - and now for Plan F: a Fairy godmother waves her wand over the who-o-o-o-o-le world, and suddenly everyone Understands what's going on,
gets Protected, Tested and Treated and Cured, and all the ticks get Knocked Out with the Alaskan cedar nootkatone compound. And maybe some from Lapland and Siberia too.
This is called a guided visualization, or maybe it's misguided? I dunno.
Posts: 13171 | From San Francisco | Registered: May 2006
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