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Post by morgellonsmoe on Oct 26, 2007 17:09:58 GMT -5
This makes me grateful I support as much as I can private researchers like the MRF cause waiting for Kaiser is like watching oil paint dry then triple it . The Mrf shows more signs of doing things than Kaiser and the CDC does so my monthly contribution to the MRF seems like a better investment . I still do monthly contribution in spite of any one who disagrees . Choice is simple to me wait for the government who has done nothing for us or make a small contribution to some one who has done things , its not that hard a choice for me ( collecting pennies here Moe )
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Post by betsy on Oct 26, 2007 23:31:02 GMT -5
I agree with Niels posts and particularly #11 where he outlined the "game plan" relationship between CDC and Kaiser. I agree with Niels that the Kaiser Study does not seem to be a beneficial step for us but could prove more damaging. It appears to be secret, does not take a sampling of Morgs outside Kaiser patients, and does superficial tests. In addition it carries some potential weight appearing to be a valid study.
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Post by betsy on Oct 27, 2007 0:17:57 GMT -5
Kaiser Oakland protests might be effective if well planned, properly conducted, and a large group of at least 200.
Another suggestion is to identify the committee that provided funding and keep that committee informed.
Step 1- find out if that was a Senate Finance Committee that allocated the $500,000.
Step 2- Identify specific congresspersons involved in allocation.
Step 3- Form our own committee to contact congressperson/s, update and keep them informed.
A. Intro letter--thanking for $500,000 funds to study.
B. Second letter--close proximity--expressing CONCERNS about the CDC/Kaiser process and beneficial use of funds. CONCERNS . open only to Kaiser patients
. public funds requested by Morgellons Community and yet study progress kept secret/ no input . no oversight of Kaiser doctors by anyone having actual knowledge of the disease
. tests selected- too generic, need to be specialized and high tech
.Kaiser bias against chronic Lyme (illegal in State of California) in view of Lyme connection
. advice of aditional research being ignored in study (agro found in 5 patients and nano/plastic envelopes and nano machines, etc) C. Niels entry # 11 game plan could be incorporated in second letter (carefully) or comprise update # 3 by Morgellon Committee writing to congressperson/s.
This would have to be done by a committee and approved by the group and perhaps groups on other boards.
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Post by mercury on Oct 27, 2007 3:23:48 GMT -5
Betsy and Niels, I agree with both of your assessments and with your recommendations. In support of Niels contention that the CDC study is designed to provide (both) the CDC and Kaiser with "plausible deniability". I would add that Kaiser has an inherent conflict of interest re the outcomes of the Morgellons study (ie Kaisers potential legal liability for its past treatment of people with morgellons like symptoms). Kaiser has a history of quickly labeling patients presenting with "mysterious" (read "psychosomatically induced") chronic skin symptoms as DOP without following the DOP diagnosis of exclusion guidelines. I think that this Kaiser practice (of presumptive DOP diagnosis with with properly ruling out a laundry list of potential pathogens) may be legally actionable.
As a Kaiser member I was summarily labeled DOP by Kaiser Derm. literally one minute after I first met the doctor and without ANY examination. Any further treatment for morgellons related symptoms has been viewed through the DOP veil. Further, no referral to psychiatry (and subsequent anti-psychotic rx therapy) was ever made in order to confirm or rule out the implicit "psychosis" of the DOP diagnosis. The result has been that I've received virtually no treatment from Kaiser for morgellons related symptoms for over 2 1/2 years. Many other Kaiser members have made this same case. Kaiser surely will want to cover their (potential Achilles Heel of legal liability) misdiagnostic tracks with a morgellons study outcome that supports their past (morgellons like symptom patient presenting) treatment history. Kaiser's likely conclusion following the fatally flawed CDC study quidelines will be that morgellons is a largely psychosomatic syndrome presenting in a group consisting of drug addicts (DOP), persons with OCD and the odd foreign traveler with a parasite or two.
Kaiser clearly is the wrong group to undertake the CDC morgellons study due to Kaiser's potential legal liability as to the studies conclusions. The CDC should undertake this study internally or find a sub contractor that doesn't have a conflict of interest as to the neutrality of of study outcomes. Public protest actions against the Kaiser selection held at the CDC in Atlanta or at Northern California Kaiser headquarters as well as letters to (CDC funding) congress or senate members could be useful.
Merc
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Post by pez1103 on Oct 27, 2007 6:34:16 GMT -5
I guess that I am in the minority .... I don't know if we are better off if the CDC does the investigation itself. The CDC completely botched the early CFS investigation and I'm sure many others.
By protesting, we may do nothing more than delay any investigation, which is NOT what I want. It may be because of all the letters and phone calls that they have not started yet.
This is an epidemological study only -- they are just collecting information on people via tests and questionaires. They are not trying to find the cause of the disease. What they need to collect information is someone who has access to lots of patients and a computer system. Kaiser has this.
Maybe I'm wrong and Kaiser will mess this up -- but maybe they won't. I just want someone to finally start looking at this.
We fought so hard to have this investigated. Now someone is ready to do it and we want them to stop.
If Kaiser finds anything, it will just be a first step. No matter what, this will not give us the answers that we need. I agree with Moe that we need to support private research.
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Post by Patti on Oct 27, 2007 12:02:13 GMT -5
I absolutely agree with Pez1103. Whether you agree with the apparent selection of Kaiser or not......whether you agree with Kaiser's methods or not.......at least something was starting to move forward. This is what we've been demanding for a long time and we did receive more positive Media attention from this, which can only help with broader recognition. We should at least give it a chance, since no matter what happens we'll have another step to build from. I think we'd be hard-pressed to find any HMO in this country who didn't have dissatisfied patients with horror stories. Instead of jumping to conclusions here, we should let the process work itself out and see what happens first. As Pez stated, it's only an epidemiological study anyway and not a final determination on anything. We still need to be diligent in funding our own research, as we know that is where our real answers lie.
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Post by Niels on Oct 27, 2007 12:07:50 GMT -5
this is not an epidemiological study. they are not testing for epidemiological agents from which to do a study.
as stated in the contract literature, this is a "utilization study"... to determine the costs of NOT TREATING MORGELLONS, or rather, the status-quo treatment for morgellons at kaiser, which is DOP/somatization disorder and to igore the possibility that it's an infection.
Like I said, this is "the tuskegee syphillis experiments" for the age of HMO's where basically HMO members are now treated as badly as african american's in the 30's:
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Post by Niels on Oct 27, 2007 12:12:59 GMT -5
"Participants were also prevented from accessing syphilis treatment programs that were available to other people in the area."
The modern equivalent of this at Kaiser, is the fac that they'll refuse to acknoqledge a LLMD's Lyme diagnosis, ignore Igenex test results, and refuse to pay for prescriptions written by LLMD.
In other words, Morgellons/Lyme patients -- even if they do get past the lies Kaiser tells and finds a doctor that isn't running a snow-job on them -- Kaiser will actively prevent these patients from getting treatment. They will furthermore spend significant time and effort casting aspersions on LLMD's making such diagnoses, and in fact, are actively involved in harassing Lyme doctors who give diagnoses that disagree with Kaiser's.
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Post by Patti on Oct 27, 2007 14:28:12 GMT -5
Niels I really do understand how you personally feel about Kaiser and I don't blame you one bit. But your unfortunate Lyme experience with them is not remarkable......the entire country is full of doctors, clinics, HMOs, and medical experts who have denied most of us appropriate Lyme treatment. This is not Blackwater, it's not Halliburton, and it's not Tuskegee. We don't know what will happen or when, if anything. I know how frustrating it can be but getting angry about something that hasn't even happened yet is a waste of precious time and energy, and you have so much to offer all of us. We know that ultimately things will proceed as they decide, with or without our input (though you can bet they know exactly what is being said). I'm not trying to minimize the suffering anyone has been through. All I'm saying is it's better to concentrate our efforts in areas over which we have more control. You are a very intelligent, motivated person and I'm sure if we all work together long enough, we can come up with a way to help ourselves better and much quicker than any long drawn-out study.
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Post by Niels on Oct 27, 2007 14:39:40 GMT -5
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_Male In 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 emergving disease: 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.
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Post by Niels on Oct 27, 2007 14:51:22 GMT -5
Niels I really do understand how you personally feel about Kaiser and I don't blame you one bit. But your unfortunate Lyme experience with them is not remarkable......the entire country is full of doctors, clinics, HMOs, and medical experts who have denied most of us appropriate Lyme treatment. It is not remarkable, other than my experiences EXACTLY MIRRORING the experiences and practices spelled out here lyme.kaiserpapers.infoTo me, it is as "empowering" to find that site after 8 months of runaround by kaiser as it was to find morgellons.org after four years of runaround by the likes of Dr. Charles Koo. And it is as revelatory to see that I'm being blatantly lied to by a doctor, claiming it is impossible for there to be any other possibility, that "they know skin and these things just don't happen." So I can understand how it feels like to be sick, and told you have "bad blood" while doctors just watch you suffer and potentially spread the disease into the community without doing a thing about it. The "tuskeegee" angle seems to be echoed in the lyme community as well. Here is an excellent reply I found on www.pensitoreview.com/2007/08/08/bushs-doctors-kept-lyme-disease-secret-for-a-year-is-the-condition-why-his-mind-is-degenerating/ , which i will reprint in it's entirety, in the hopes that people will realize my angle isn't a personal vendetta, but rather, seeking the truth, a cure, and appropriate ethics on the part of government and our doctors:
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Post by pez1103 on Oct 27, 2007 15:22:13 GMT -5
This is just my humble opinion. ... I think that the CDC has shown itself to be corrupt (maybe inept is a better word) many times in the past. I don't think that any study that they do will necessarily be superior to a kaiser study. Kaiser may have an agenda, but the CDC may have an agenda too. Look at what happened with CFS. It took 20 years for the disease to be recognized. In the begining, they sent a group a CDC scientists to research an outbreak of CFS and they concluded that the disease was imaginary and then spent the afternoon gambling at a local casino. I've said this a hundred times. The government is not going to save us. We need to save ourselves. Regarding the ability to FOIL government research -- I made a FOIL request over a year ago and the CDC has not responded yet. They said that the request was being "expedited" too I believe that ultimately, even tho Kaiser collects the data, the CDC will be responsible to review it and draw conclusions. I don't want to argue with anyone. I think it's all a horrid mess.
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Post by Niels on Oct 27, 2007 15:36:24 GMT -5
I just fired off a letter to the usual suspects, cc'd to Michael Moore: Subject: Does the CDC/Kaiser Morgellons study violate law of "informed consent" ? 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.... << copy of post #29>>
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Post by toni on Oct 27, 2007 16:05:45 GMT -5
Niels, I know we all feel the same in one area for sure...no one is doing anything fast enough. Niels, what do you feel would be the best route for Morgies to take at this point. I've sure been trying to figure something out. I know Moe had some suggestions in raising money. We need to then get some type of structure and letter to write organizations that donate for such studies. And or target someone super famous or a few of them, and get them involved. And or push on the ones studying. And or TV and newspapers for pubic awareness. All the above I think are the only way for us to push this forward as fast as we want it, cause I'm chomping at the bit like everyone else too. (possibility maybe) Steve Wynn here in Vegas along with a few other "deep pockets" that build casinos. (H) last year had mentioned about this, but "if" someone would write a letter...(I'm not a great letter writer) Betsy, you are, really you are, maybe you can address Steve Wynn - if you would, we'd sure appreciate it. Here's why. Las Vegas IS the entertainment capitol of the world. Can you imagine the hotels here having to be concerned about "a spreading epidemic" Well..this place can't afford to not have the 250,000 visitors it does each and every week. And that's not counting holidays which is twice that! Las Vegas here is NON STOP people day and night...and this place might be a place for us to start (for the $$$) needed to research this with the right people. Any thoughts?
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Post by Patti on Oct 27, 2007 17:31:14 GMT -5
Good thoughts Toni. We can complain forever about everything under the sun, Lord knows there's enough blame to go around. But at the end of the day we will only get the results we want from our own proativeness. I'll help you all I can with anything you want to initiate in your own fabulous city......just let me know what you need done.
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Post by toni on Oct 27, 2007 17:56:36 GMT -5
If someone will write a letter, addressing
What Morgellons is (short version) with CDC acknowledgements, Mayo Clinic's acknowledgements, and WHO's acknowments, and something about Kaiser (to prove validity ONLY) of Morgellons reality is what "those" acknowledgements are for...and HOW Kaiser and CDC could take "who knows how long" -
And within that letter, what Morgellons does (short version wrapped in a nut shell basically about it's crippling effects and disfiguring effects (for realism of what this stuff does do) and the lesions, and BUGS expressing from the skin -
And what's needed (as far as money) which is nothing to them in what we need especially if Las Vegas is "on the line" -
And who at CDC "Steve Wynn or Wayne Newton can contact" -
And what (THE IMPACT THIS 'MORGELLONS' WILL HAVE ON HOTELS IN LAS VEGAS).... (( vacancies )) -
WE can feel VERY confident....Steve Wynn and Wayne Newton will do something to protect this city! They'll be on CDC and Kaiser just for the sake of protecting tourists here - well..that's all they'll care about...but so what!
Steve Wynn just spent almost 3 BILLION on the last casino he built here. There's more casino's here than one can imagine. They cannot afford people being afraid to come here.
This place costs mega mega millions just for electricity for one day...so can you imagine "if people were even the slightest bit worried about staying in a hotel here?" ALL the revenue they need to float Las Vegas IS TOTALLY dependant "mostly" on tourists staying here to gamble.
So we need a letter. I've sort of outlined the highlights that will get their attention.
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Post by robertalouise26 on Oct 27, 2007 19:50:56 GMT -5
dear toni even tho I don't live in your country it sounds like a great idea to me. I hope that others on the board pick up on it. Love and best wishes. Roberta.
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Post by pez1103 on Oct 27, 2007 21:13:23 GMT -5
Many people have reported developing symptoms of Morgellons from staying in a hotel. I believe that the fibers that we leave behind can pass on the disease.
I've written a few letters that I sent to dozens of foundations asking for help. If someone is interested, I can PM them or post them and people can modify the letters however they want and ask for donations.
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Post by sammy on Oct 27, 2007 22:11:12 GMT -5
There is only one way I got the CDC to not answer, tell them we are on the way to Washington to see the President. Strike in front of the white house. It was the only email they wouldn't answer of my three way back with a form letter ..... Tell the CDC we won't except Kaiser on any bases, if that's what it takes. IT'S NOVEMBER! They haven't moved. Only distractions to stall us. Because am sure they know what this does to people after you have had it long enough. Push comes to shove & it's the only way to make them move. I feel for those who have to use Kaiser after all that has been said. Well, how long do they want you all to wait to use them? Another two years?? Am glad I have private medical, but if I didn't, I still wouldn't let Kaiser touch me.
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Post by sammy on Oct 27, 2007 23:09:02 GMT -5
I mean like, shake up the right people. Government offices, FDA,USDA, the white house,congress,the board of doctors,the American red cross. All have email addresses. You can send all the wonderful & best info you have on this illness,excellent letters,the pictures,silent super bug. You can use no names and even use a library computer. Send it to places that will start making people ask a lot of questions, LIKE the CDC for not telling the public or getting us any help. Pollution control offices, environmental agencies,world hunger, HIV agencies. The ones who get money. Veterinaries, our pets are sick. World health assc. ect.
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