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CDC and Morgellons Disease

Historical Highlights and Current Status

Material posted below is only the most recent. The CDC Morgellon case line was tested by Dr. Schaller Oct 6th, 2007 and was working.

For details on the investigation of Morgellons disease in the U.S., please call pre-recorded Morgellons disease info line at CDC to hear a brief statement about this illness. You can leave a message at the end of the recording, if you choose. 404-718-1199

You can email the CDC about Morgellons here: Morgellonssyndrome@CDC.gov

Obviously, any information should be initially terse and clear--allow them to draw out details when they follow up. Based on the work of the "MRF" which is the Morgellons Research Foundation, listed below, it appears that the best response to this illness is through local senators and/or ones involved in CDC oversight.

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May 2004:
The Infectious Disease Epidemiology and Surveillance Unit of the Texas Department of State Health Services(DSHS) confers with CDC about reports of Morgellons disease in Texas, after US Senator for John Cornyn asks TX DSHS to investigate. These two agencies conclude that no public health investigation is warranted, and patients are told to see their physicians.

June 2004:
CDC director begins responding to US Senators inquiring about assistance for their constituents with Morgellons disease, and assures dozens Senators that there is no cause for alarm.
Click here for first CDC response to US Senators, dated June 18, 2004

April 2005:
CDC director responds to request for meeting from MRF to discuss the Morgellons situation and admits she is concerned. CDC director confirms that CDC is actively working with dermatologists to establish a case definition.
Click here for CDC letter to MRF

October 2005:
MRF Medical Advisory Board and Board of Directors officially requests a conference call with CDC to discuss reports of Morgellons disease in the U.S. CDC asks MRF Board for available conference dates. MRF then receives email from CDC stating that CDC is not willing to participate in this conference call.

November 29, 2005:
Draft case definition of Morgellons disease, developed by physicians on MRF Medical Advisory Board, sent to CDC.

February 14, 2006:
Revised case definition of Morgellons disease, sent to CDC by MRF Medical Advisory Board.

April 2006:
US Senator for California, Dianne Feinstein, writes strongly worded letter to CDC Director stating the need for CDC to take more aggressive action on surveillance, prevention and treatment of this disease.
Click here for Senator Feinstein's letter to CDC

April 2006:
CDC Director begins directly contacting Morgellons patients, in response to requests for help for these patients from US Senators. CDC director informs these patients that CDC would develop a multi-disciplinary work group to address the issue.
Click here for CDC Letter to Morgellons patients

May 2006:
California Dept of Health Services asks CDC for help investigating reports of Morgellons disease in California.

June 2006:
CDC spokesperson announces to media that CDC task force devoted to Morgellons disease, has been formed, and has begun having internal meetings.

November 2006:
Physician who is director of MRF Medical Advisory Board asks CDC to meet with MRF to discuss Morgellons disease. After several weeks, CDC responds that CDC is not willing to meet with MRF.

December 2006:
US Senators for New York, Hilary Rodham Clinton and Charles Schumer sign single letter to CDC Director asking CDC to expedite their investigation of Morgellons disease.
Click here for Clinton/Schumer letter to CDC.

CDC, in conjunction with the CA Department of Health Services, informed the media that an official CDC investigation of Morgellons disease would be launched in the state of California in August 2006. The start of the investigation was delayed until September 2006, and then again to October 2006. CDC then stated that the investigation in California would likely take place in the first quarter of 2007.

March 28,2007
CDC Removes Delusional Parasitosis web page from the Division of Parasitic Diseases site.
Click here for removed web page.

June 12, 2007
CDC launches web page with information about "Unexplained Dermopathy (aka 'Morgellons')"
Click here for CDC Morgellons web page

July 2007
The CDC announced that is seeking to award a sole source commercial contract for Morgellons investigation. The Government determined that Kaiser Permanente (KP), Northern California is the source that will meet the Government's needs.

August 1, 2007
CDC issued the following statement Regarding Morgellons Disease and their plans for investigation:

"Morgellons is an unexplained and debilitating condition that has emerged as a public health concern. Recently, the Centers for Disease Control and Prevention (CDC) has received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media regarding this condition. Persons who suffer from this condition report a range of coetaneous symptoms including crawling, biting and stinging sensations; granules, threads or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores) and some sufferers also report systemic manifestations such as fatigue, mental confusion, short term memory loss, joint pain, and changes in vision. Moreover, some who suffer from this condition appear to have substantial morbidity and social dysfunction, which can include decreased work productivity or job loss, total disability, familial estrangement, divorce, loss of child custody, home abandonment, and suicidal ideation.

As of February 2007, approximately 10,000 families had registered with the Morgellon's Research Foundation (MRF) and felt they or a family member met criteria for Morgellons as defined by the MRF. Of the U.S. families in the MRF registry, 24% reside in California with geographic clustering in the San Francisco metropolitan area.

The etiology of this condition is unknown, and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors. An epidemiologic investigation is needed to better characterize the clinical and epidemiologic features of this condition; to generate hypotheses about factors that may cause or contribute to sufferers' symptoms; and to estimate the prevalence of the condition in the population; and to provide information to guide public health recommendations. A contractor is needed who can provide timely services to assist the CDC in the investigation of this emerging public health problem."

Description of the Work:

2.1. Describe the clinical and epidemiologic features of persons who have reported themselves as having this unexplained skin condition, including assessing the frequency of co-morbid conditions (e.g., neurocognitive deficits, neurologic conditions, major psychiatric disorders).

2.2. Collect information to generate hypotheses about possible risk factors for this condition.

2.3. Assess the histopathologic features of the skin condition based on skin biopsies from a sample of affected patients.

2.4. Characterize fibers or threads obtained from patients with the condition to determine their potential etiology.

2.5. Describe the geographic distribution and estimate rates of illness.

2.6. Describe health care utilization among persons with the condition.

The timeline:

4.1. IRB [Independent Review Board] Clearance October 30, 2007

4.2. Database of potential cases (study cohort) November 30, 2007

4.3. Database containing all results of clinical evaluations, Including recorded histories and physicals, laboratory tests (See Attachment 001 for required laboratory tests), chest x-rays, digital photos, neuorcognitive/neuropsychiatric examinations. March 1, 2008

4.4. All skin biopsy specimens and fiber samples collected from case-patients. March 1, 2008

4.5. Electronic database containing demographic information, zip code of residence, relevant past health history, such as medications, provider visits, and hospitalizations for cases. Database should include a unique patient identifier to allow linkage of clinical and other test results with demographic, healthcare utilization, and survey data. April 30, 2008

4.6. Database with denominators for all visits (total and by specialty) and hospitalizations during study period to allow estimation of disease rates in the population. May 30, 2008

Click here copy of RFQ
SOURCE: www.morgellons.com/cdc.htm


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