Neils is correct, brought this from lymebusters:
I haven't heard a peep from anybody about this, posted in another thread and also by email to various folks at CDC, Kaiser, morgellons.org and thenmo.org....
I was hoping somebody would say something like "gee whiz... you just figured out a legal way of shooting down the Kaiser study and forcing the CDC to do a non-corrupt study that doesn't involve lieing to patients about lyme disease and the possibility of a parasitic infection"
And yes, that's what I'm talking about w/r/t "informed consent" ... it is against the law to do a repeat of the tuskegee syphillis experiments, to only give patients the "IDSA" line on Lyme when there's a competing, successfully practiced diagnosis and therapy from ILADS that Kaiser refuses to acknowledge let alone mention to their patients. Likewise, Kaiser will also refuse to acknowledge the other parasitic and bacterial components of this disease that scientists are now finding without question in smaller-scale studies. They won't test for it, they won't treat for it, and they won't tell their patients that there are doctors that believe it is parasitic, and that there are patients deriving benefit from antiparastic and antibiotic treatment.
That's like the Tuskegee Syphilis study not informing participants of the development of penicillin which would cure their "bad blood" and preventing patients and study participants from accessing this outside help that would correctly diagnose and treat them.
It is HUGELY MASSIVELY AGAINST THE LAW FOR SUCH EXPERIMENTS TO BE CONDUCTED WHICH VIOLATE INFORMED CONSENT
The CDC Kaiser Study by definition violates informed consent because Kaiser is strongly backing a medical position that relegates Lyme patients to a lifetime of suffering and palliative care (which is how the IDSA treats chronic lyme -- by prescribing antidepressants). "informed consent" means that patients should be made aware of
ilads.org guidelines for treatment and diagnosis. "informed consent" means that patients should be made aware that SOME doctors published papers stating explicitly that Morgellons IS NOT DOP and NOT PSYCHOSOMATIC and that Kaiser does not agree with those doctors.
That way, at least a patient can back out of the kaiser study and get correct care through an LLMD, rather than stay enrolled in a Tuskegee Syphillis Study for the modern age that is sure to leave them far more disabled than when they started.
I continue to be surprised that nobody seems to think this is important. It should be on the news!!
-------- Original Message --------
Subject: Does the CDC/Kaiser Morgellons study violate law of "informed consent" ?
Date: Sat, 27 Oct 2007 13:35:24 -0700
To: various people in CDC, kaiser, and michael moore
References: <46E5129C.3020107@gmail.com>
I recently posted the following
lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=1193356722&page=2#1193513980(see below) regarding the CDC/Kaiser Morgellons study (
www.cdc.gov/unexplaineddermopathy/investigation.html )
I'd love to hear comments, or see documentation, on how this study abides by Dept of Health and Human Services Office for Human Research Protections regulations (
www.hhs.gov/ohrp/ ). I believe the study is in violation on numerous areas and represents a modern-day version of the Tuskegee Syphilis experiments.
Is Kaiser being used for "plausible deniability" to protect the CDC from culpability, and to protect study data from FOIA requests by claiming "corporate privacy"? Why must the CDC be in the business of repeating the mistakes of it's past? (
www.cdc.gov/tuskegee/timeline.htm )
The difference between 1932 and now is that we're not illiterate, and we have the internet, and we can quickly figure out that "bad blood" is a lie. Or rather, the modern equivalent of that Tuskegee lie that Kaiser is using against its Chronic Lyme and Morgellons patients -- "somatization disorder." See
lyme.kaiserpapers.info for details....
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One interesting "legalistic" thought I had is to see whether the CDC/Kaiser study actually follows the law > regarding human experimentation. That law was specifically written/rewritten in 1974 because of the atrocities of tuskegee became public and a "scandal":
en.wikipedia.org/wiki/Tuskegee_Study_of_Untreated_Syphilis_in_the_Negro_MaleIn particular, w/r/t/ laws of "informed consent" I think there might be some violations in the CDC/Kaiser study that need to be brought to light. This is a scandal in the same way Tuskegee was!
currently, on the table, and in publication are numerous articles indicating an infective etiology for morgellons (
nielsmayer.com/Morgellons07.pdf ,
www.eblue.org/article/PIIS0190962207001958/fulltext ). This is both being ignored by Kaiser and the CDC in the study. W/r/t Lyme findings in papers by Stricker/Savely, they were clearly done under ILADS guidelines (since both authors are ILADS member, and Stricker is ILADS president). And yet Kaiser also refuses to inform patients of ILADS diagnosis and treatment guidelines, and explicitly ignores warnings against the testing protocol they will use (as per corrupt IDSA guidelines) for this Morgellons study (which is basically, the 100%-false-negative-on-the-west-coast ELISA.)
So in addition to NOT COLLECTING ANY USEFUL DATA WHATSOEVER on whether the study patients have Lyme disease, they'll also miss the clearly warned agrobacterium possibility, found in numerous publications and mentioned in more detail in 2007 stricker/savely paper. They also don't even look for parasites, which is mentioned in a number of articles that state that Morgellons is not DOP and that parasites may be involved.
morgellons.org/newsletters.htm clearly states some things that patients should at least be warned and tested about, given that it is a published fact regarding correct diagnosis/treatment of an emerging disease: "The preliminary findings revealed consistent abnormalities in immune function, chronic systemic inflammation, multi-system involvement, and the presence of parasites."
The ACTUAL WEBSITE FOR THE DISEASE THEY CLAIM TO BE STUDYING SAYS BACTERIA AND PARASITES and yet patients in the study will not be informed, tested-for, and certainly not treated for any of these agents.
Kaiser/CDC will continue to discriminate against the patients in the study and assume that they're all nut-jobs, and will therefore not really take anything said seriously. They'll run their rudimentary tests in order to come up with the conclusion they've already made, both for this disease, and for chronic Lyme -- that it's "all in the head." (or rather, they punt on correct diagnosis/treatment with this specious claim).
So to me, there's some serious problem with "informed consent" because there's significant published information detailing exactly what they need to be looking for, and they're very specifically NOT LOOKING FOR THOSE AGENTS IN THIS STUDY NOR ARE THEY TELLING PATIENTS THAT BACTERIA OR PARASITES MAY BE INVOLVED.
And that's no doubt what's Kaiser's
en.wikipedia.org/wiki/Institutional_Review_Board is looking into right now... Can we actually legally pull the wool over the eyes of all our Morgellons study victims, or is the fact that we're blatantly ignoring important information against the law, as per
www.hhs.gov/ohrp/ (Office for Human Research Protections)
It might make sense to make our complaints to that part of the Dept of Health and Human Services.
-- Niels Mayer
nielsmayer.comPS: for more info on Morgellons, see:
nielsmayer.com/roller/NielsMayer/entry/morgellons_discovery_curenielsmayer.com/roller/NielsMayer/entry/morgellons_epidemiology_california --------------------------------------------------------------------------------