Ready to hear from the CDC!!!

[niecy]

Hi everyone....I hope you are all having as happy of a new year as can be expected!!
I am getting restless about this disease, or illness, or whatever it may be called.
I have been searching the internet for several hours, and have found absolutely no new information
about Morgellons, or anything related to it.

So.....my mind is going in circles right now and I wanted to throw something at you all.
I was just wondering if we could all get together and make a LOUD enough statement to be
heard. I know that we have all done lot's of things to get attention, and even some very similar
to what I am thinking about. Like the rally in Atlanta, and writing our congressmen and women, and
many, many other things.

But, we were promised a statement by the CDC in January of this year....and it is here, I know it's just
the first week, but I don't want to let them off the hook.

I am wondering if there might be some way that we could co-ordinate an event that would make
them go ahead and make that announcement, whatever it may be, and us not have to continue to sit
on pins and needles, so to speak.

I know that most of the people on this forum are members, whether active or not, on many other sites and at
other support groups. Our little forum is the most visited and used one that I have been able to find. That being said,
the phrase "spreading like wildfire" comes to mind.

I am suggesting that we get our calendars together and once again pound(can't use the word b o m bard, too many images) the CDC, and anyone else you
would want to, with phone calls and emails. If you live close enough to any of the researchers or the CDC, you
could even knock on their doors if you so desire. And I even think that we could do it once a week, or every single day, if you
want, until we get answers.....I would do it alone if I thought it would even be noticed, but it wouldn't and all of
you here know that as well as I do. And hey....we'll change the days and times on them so they won't know
when to expect their b o m-bardment!! There's nothing like catching someone off-guard!!

There also seems to be alot of NOTHING coming from our supposedly "known" researchers. I say we hit them
with full force also.

One person cannot, and will not make a difference, and I know that you are all aware of that fact. I am not
suggesting anyone here doesn't know everything, and much much more, than what I am saying.

I am on the other hand suggesting that WE do something. I am tired, sick, and worried about my children and
grandchildren. I know many of you are as well.

All that we have right now are just "possibilities", nothing concrete. I do believe many are pegging it fairly well, but,
who am I? Nobody, that's who!!! We HAVE to have the attention of people that MATTER!!!!! I read this forum every
single day, most every single word posted, but what good is it doing? Well, actually, it has probably been a life
saver for me. But I want more, I want it all.....I want public recognition!!!

I want scientific evidence produced, and I want it yesterday!!!!

I don't like making posts like this, because, and I know some of you that know me won't believe it, but I have very
tender feelings......most of the time when they get hurt it looks more like I am just a *****, but that is a cover-up, and
a very clever one, I might add!! I am really afraid of trying to be aggressive, because I don't like to get my feelings
hurt any more that the next person does......but my feelings ARE hurt, and have been for 3 1/2 years now. I am so hurt
about this illness, I can't even describe it.

My natural instinct, as is most of yours I'm sure, when my feelings are hurt is to lash out, but there is no one to lash out
at yet. I don't want to be mad, I want to be treated like a human being, one who used to be a very productive, tax paying
citizen.

Anyone have any feelings about this? Like I said, I am out on a limb here, but I really don't mind, not if it get's us just
the tiniest fraction of their time.

I hope to hear from you guys....here on the board, or pm, it doesn't matter to me.

That's all I had to say.....

Love,
Niecy

[Morgan]

Hey niecy,

I TOTALLY understand what you are saying. Writing and e-mailing the NEW administration is a great idea. Tom Dashcle is going to be the new Health & Human Service Administrator. He appoints the new CDC director. I'm sure that he is going to bear in mind Hurricane Katrina, Autism causing vaccinations and culpability when making his selection. I'm planning on waiting for the changing of the guard before I write however. Otherwise it is the same brick wall I've been beating my head against for eight years.

New and good people with fresh can do approaches are on their way.

Hopeful in the new year,

Morgan

[carla]

I've been thinking the same kinda thing Niecy but like Morgan thought we should wait.
But thats why they do it . Set up theses useless studys and give them selves a year to report on it.
Lets face it they are not going to change just because a new guy is in power .
Throughout the history of the CDC they have done nothing that came close to protecting the public,whoever was in power .
The highly qualified Dr Leornard Horowitz,who is probably the greatest humanitarian ever, says
'They are the Center of Disease Creation and I am appalled by what goes on there.''
But lets give them hell anyway cause no one deserves it like they do .
Where shall we start ?

[Sadsack]

The inauguration is two weeks from tomorrow. Why don't we blast the CDC now and then again after the inauguration? I'm going to their website now and send an email...and get back the generic announcement from a year ago about the study. I have YET to get anything that wasn't prepackaged in the year and a half I've been writing and calling them.
But I think it may pi$$ them off enough to get their email boxes jammed up that it just could have a teeny-tiny effect.
It always makes me feel just a tiny bit better after sending off one of these emails.
SS

[carla]

Maybe we could select a couple of congressmen as well .It is them who put the pressure on these organisations. The plan for the study was announced after we targeted congress.
We had been sending the CDC e-mails for years with no luck.
One woman dies of Bird flu and they halt all chinese chicken imports. Millions of us get this disgusting soul destroying disease and we dont even get acknowledged.
WTF

[Sadsack]

Carla -
Awfully suspicious, doncha think???
That's a great idea, picking the sittings senators/reps who will still be there after 1/20.
Those 2 reps in that Lyme YouTube would be perfect....I'm too tired today to research it. Actually feel like crap.
SS

[terri]

I cautiously await the findings of the CDC I hope for the best and get the answers we need,and all they have learned, if they really looked or are bright enough to see,I wait with you I pray for the best............love terri

[niecy]

First of all, Terri, you have got to be the sweetest thing!!! Thanks for your prayers, and I also pray for all of us!!!

Ok then Carls, Morgan and Sadsack....
Let's start working on it then!!

I will try to get in touch tomorrow if muter is working

Nite all!!
Niecy

[Morgan]

Hey Niecy,

Just as soon as they are sworn in and have their new office addresses and e-mails. This is what I plan to send them. They need to be brought up to speed immediately. This post in in Part I & Part II due to the posts only being able to hold 1000 characters a piece. (I will send a more polished version of course).

Part I :

_____________________

Dear Health & Human Services Administrator Tom Dashcle;

The following is a letter I wrote to the Office of the Inspector General to the United States I had written in December of 2007 regarding a debilatating condition currently known as Morgellons Disease. Your immediate attention is needed to bring the public up to speed on the results of the alleged research study which was said to be performed by the CDC and the results of which have been kept from public view up until this time which is unacceptable.

This is what I'm sending to get the new Health and Human Services Director, Tom Dashchle up to speed. This is the content of what I sent to the Office of The Inspector General in December of 2007.
___________________________________
Depart of Health and Human Services
Office of Inspector General
P.O. Box 23489
Washington, DC 20026


December 27, 2007


Dear Inspector General,

I am writing to report the improper misconduct of the Director for The Centers For Disease and Prevention regarding the mishandling of the emerging infectious Morgellon’s Disease . Ms. Julie Gerberding’s misconduct has contributed to the abuse and waste of taxpayers’ money, which threatens the integrity of HHS programs and operations. This lack of dialogue with the public and the medical community has not only been inappropriate but is a threat to public health.
On July 27, 2007 The House and Senate found it necessary to insert the following into The Labor Health and Human Services Appropriations Bill number S1710 FY2008. This excerpt is located on page seventy-seven.
Included in this document was as follows:

Morgellons Disease.—The Committee urges the Centers for Disease
Control and Prevention to study an unexplained skin condition
commonly known as Morgellons Disease, which affects over
10,000 individuals with skin lesions, joint pain, and neurological
difficulties, among other symptoms. The Committee encourages the
Centers for Disease Control and Prevention to work as quickly as
possible to plan and begin this important research to increase the
amount of information available to practitioners and the public.

Why was it necessary for the chairman of the Labor Health and Human Services Committee, Senator Thomas Harkin to include these words in this bill? Over the past ten years or so the Center for Disease Control and Prevention has received and untold number of correspondence from Senators and Representatives regarding the emerging public health threat of Morgellon’s Disease. This is far too long for a large segment of the United States taxpaying citizens to suffer from this debilatating disease. The Center for Disease Control and Prevention only acknowledged the very existence of this disease as recently as July 12, 2007. This is not enough. The gross mismanagement and mishandling of this agencies communications toward the public and medical community needs to be investigated. Enclosed are many documents regarding these issues. There is going to be an alleged Morgellon’s Disease research study which is going to be contracted out through Kaiser Permanente of Northern, California. This organization has a terrible track record for the abuse of Morgellon’s Disease patients and I am in great fear that the mismanagement will continue. The Morgellon’s Disease community has little doubt that there needs to be oversight and accountability regarding this study. This Federally funded study needs to be made public and transparent in every aspect for it have integrity towards public interest and comply with Informed Consent of the research subjects.

Sincerely,

____________
Enclosures


THE ENCLOSURES WERE AS FOLLOWS IN THE WRITTEN COPY I MAILED:

BODY OF EVIDENCE

Background information on the involvement of the Centers for Disease Control and Prevention (CDC) in the investigation of Morgellons disease in the U.S.

Charles E. Holman Foundation

August 8, 2006 News story with Rutz being quoted as to when Morgellon's Research study would begin.

CDC Launching Investigation Of Morgellons Disease - News Story - KTVU San Francisco




October 2003:

Senior staff of the Infectious Diseases Branch of the California Dept of Health Services confers with CDC about cases of Morgellons disease in California, after being alerted to apparent clusters of the disease in the state. These two agencies conclude that no public health investigation is warranted, and patients are told to see their physicians.

Click here for California DHS Letter to Morgellons Research Foundation (MRF)
Morgellons



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

Morgellons

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
Morgellons



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

Morgellons

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

Morgellons

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.

_____________________

Morgan

[Morgan]

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.
Morgellons


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.

Morgellons


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

Click here for CDC Morgellons web page
Morgellons


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

Morgellons




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

Please see CDC vision and Functional Mission Statement and other details, below:



CDC Vision for the 21st Century

Healthy People in a Healthy World—Through Prevention”

CDC, as the sentinel for the health of people in the United States and throughout the world, strives to protect people’s health and safety, provide reliable health information, and improve health through strong partnerships.

CDC Functional Mission Statement

The Centers for Disease Control and Prevention (CDC) serves as the national focus for developing and applying disease prevention and control, environmental health, and health promotion and health education activities designed to improve the health of the people of the United States.

To accomplish its mission, CDC identifies and defines preventable health problems and maintains active surveillance of diseases through epidemiologic and laboratory investigations and data collection, analysis, and distribution; serves as the PHS lead agency in developing and implementing operational programs relating to environmental health problems, and conducts operational research aimed at developing and testing effective disease prevention, control, and health promotion programs; administers a national program to develop recommended occupational safety and health standards and to conduct research, training, and technical assistance to assure safe and healthful working conditions for every working person; develops and implements a program to sustain a strong national workforce in disease prevention and control; and conducts a national program for improving the performance of clinical laboratories.

CDC is responsible for controlling the introduction and spread of infectious diseases, and provides consultation and assistance to other nations and international agencies to assist in improving their disease prevention and control, environmental health, and health promotion activities. CDC administers the Preventive Health and Health Services Block Grant and specific preventive health categorical grant programs while providing program expertise and assistance in responding to Federal, State, local, and private organizations on matters related to disease prevention and control activities.

__________________

Morgan