posted
Metallic Blue - thx for your great work! Just to let you know, Dr. Weinstein is no longer on the panel list.
Posts: 13117 | 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.
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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.
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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.
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