CDC update on November 1st, 2007

[kmar]

http://www.cdc.gov/unexplaineddermop...stigation.html

Why did CDC select Kaiser Permanente as the partner for the investigation?

Because this condition is thought to be rare, CDC sought a location and an organization that would likely have an adequate number of patients to be able to conduct a careful investigation. There are several factors that led CDC to select Kaiser Permanente Northern California as the partner in this investigation. First, Kaiser Permanente Northern California is located in a geographic area where self-reported cases of this condition are concentrated. Second, Kaiser Permanente has a membership which comprises a large proportion of the population in the Northern California area, thereby allowing estimation of rates of the condition in the population. Third, Kaiser Permanente has electronic health records that will allow a systematic method of identifying patients who may have this condition.


If I have more questions about the CDC’s investigation, what should I do?

Inquiries regarding this investigation can be sent to:
Email: morgellonssyndrome@cdc.gov or
Phone: 404-718-1199 (Pre-recorded message with voicemail)

[Jo]

Runswithscissor and all,

Anyone know if the CDC are on track with the work? http://www.fbo.gov/servlet/Documents/R/1771563/804903

I know that Kaiser Permanente in Northern California was the company awarded the contract.....

But that the investigation will begin after review and approval of the scientific protocol by the CDC and the Kaiser Permanente institutional review boards (IRBs). Is that review process done?? Any moles out there?

Scrap my first question - there's no way they can finish by May 2008!!

Jo

[redibooks]

doesn't look like much progress

How about.... kaiser has identified xx,xxx patients describing symptoms consistent with morgellons... of these xx,xxx, xx,xxx have been contacted and agree to further examination... etc

[Jason]

Hey Jo,

I once had high hopes on the CDC solving this puzzle - but the more i see about the CDC and Kaiser's previous corrupt performances i.e the non existence of chronic lymes disease the more i believe that this is one big corrupt political sham.

I hope i get it wrong - there is a guy whose name is neils and a few people have posted some of his work here. He believes we should be exposing to the US senate (obviously the Brits can't do this!) to the corruption the CDC is going to use in progressing with this investigation. According to him they will dismiss the ILADS method of diagnosing Lyme disease and use the IDSA guidelines. Apparently the IDSA guidelines meet with the CDC's corrupt requirements.

Maybe someone can lead you to where Neils letter was i can't remember where but it was only posted in the last month.

[niecy]

http://nationallymereport.com/?p=294

The Kaiser/CDC Morgellon’s collaboration

June 15, 2008

February 16, 2008
Editor’s Note:
Questions? Comments? Write: National Lyme Report Editor Derek Clontz. He reads and answers all e-mails, usually within minutes and always within one business day.


The Kaiser/CDC Morgellons Collaboration
The Kaiser Papers

By Miguel Perez-Lizano
Morgellons is a disease that has garnered widespread attention in the past few years. The cause of the disease is unknown. The most significant aspect of the disease is the growth of multicolored fibers erupting from lesions in the skin. Many patients with Morgellons also have documented Lyme disease, and Morgellons patients typically have symptom overlap with Lyme disease.


This disease is not a new disease. In the past doctors have dismissed Morgellons sufferers with a diagnosis of delusional parasitosis – a psychiatric condition in which a patient believes parasites are crawling in their bodies. I know one Morgellons sufferer who is an intelligent, normal professional and was given this diagnosis. Dismissive use of the term “delusional parasitosis” should be a red flag that signifies the uninformed, uncaring doctors who parrot this diagnosis to hide their ignorance and laziness.


The Centers for Disease Control has awarded Kaiser Permanente a grant to study Morgellons in their patient population in Northern California. The CDC uses Kaiser for studies because of their captive member base. All, or most, records for health care received reside at Kaiser and can be retrieved. In addition, patients included in clinical trials can be easily tracked. This also avoids the expense of enrolling people in clinical trials or studies.


It is more than likely that this study will validate the theorem “garbage in, garbage out.” One potential flaw is the probability that inadequate care has affected the reliability of information contained in patient records. An example that would relate to this study is the fact that many (and perhaps all) Morgellons sufferers also have Lyme disease. Kaiser’s attitude of Lyme denial is documented in Kaiser Papers and elsewhere.


It is highly unlikely that Kaiser members who have complained of Morgellons have ever received a Lyme blood test by Kaiser. And in the event that they have, Kaiser’s serodiagnostic Lyme test is wholly unreliable and will almost always result in a negative reading for West Coast members in particular. So the association of Morgellons with Lyme disease will not be made.


I am very skeptical that this study will result in anything helpful to the Morgellons community and may, in fact, be harmful. In all likelihood, this study will be tailored to suit a desired outcome: denial that Morgellons is a real disease.


Some Morgellons patients who have been badly treated by Kaiser have stated that they will not participate in this study. Whether or not Kaiser will go ahead anyway and use data from their medical records without their permission is unknown.



The links below provide some informative articles worth reading relating to this study.
U.S. orders study of bizarre Morgellons condition (Associated Press)
http://www.nctimes.com/articles/2008/01/27/health/16_49_561_25_08.txt
NIELS LETTER TO THE CDC
Subject: why is CDC using a lyme-denialist organization to study Lyme-related Morgellons?
http://morgellonsgroup.proboards23.com/index.cgi?board=priority&action=display&thread=118 8617937
One question that must be asked is where is Kaiser reporting this income they generate from using their captive member base and member records for studies such as these? They are not separately reported in Kaiser’s financial filings. This would include income from not only government agencies but also drug companies and other for-profit entities as well.
Perhaps the most infamous Kaiser/CDC collaboration was the fraudulent enrollment of minority low-income children in a harmful measles vaccine trial done in the early 1990’s.


MEASLES VACCINE EXPERIMENTS ON MINORITY CHILDREN TURN DEADLY
http://www.nvic.org/History/Newsletters/nlr696.htm
The integrity of the CDC should be questioned along with that of Kaiser Permanente. It is unfortunate for the nation that an increasing number of health care advocates in specialty areas are now discrediting the CDC as a source of reliable information.



Niecy