November 2007 Newsletter 

 

To MRF Registrants:

 

Topics:
1.  Reach out to Congress

2.  Goodsearch Nov 20

3.  Registration Database
4.  MRF information update sent to CDC

5.  Thank you to Congress

 

The MRF is again asking sufferers of Morgellons disease, their friends and family, and concerned citizens and clinicians to write their senators and US representatives.  It is imperative at this time that we ask congress to request that the CDC make the investigation of Morgellons disease a priority, to expedite and expand the upcoming investigation, and to inform the medical community regarding the investigation. 

 

Even if you have written in the past, we are asking that you write again.  In order for us to be successful and for the CDC to continue its forward momentum, it is imperative that we all write on a regular basis until the CDC finally recognizes Morgellons disease and we ultimately find a cure. 

 

The following is a sample letter that you can use.  Your representatives' contact information can be found at:   www.senate.gov or www.house.gov .  It is best to fax your letter or send it via snail mail.   Please also send a carbon copy of your letter to Mike Leavitt, the head of the US Department of Health and Human Services (HHS).  The HHS oversees the CDC.  Mr. Leavitt’s address and FAX number are: U.S. Department of Health and Human Services, 200 Independence Avenue, S.W., Washington, D.C. 20201, FAX 202 690 7203   (email address: Mike.LeavittVT@hhs.gov )

 

We appreciate your help with this important endeavor. 

 

Sample Letter:

The Honorable Senator (fill in your state's US senators' names)
United States Senate
Washington DC 20510

 --OR--
 Representative (fill in your US representative's name)
US House of Representatives 
Washington, DC 20515
 
Subject:     Morgellons Disease- Immediate Action Needed by the CDC
Importance:  Urgent

Thousands of families in the US and abroad are reporting symptoms of a serious and disabling illness which is being called Morgellons Disease.  Unfortunately, to date, no one understands the cause of Morgellons disease, nor how many US families are currently at risk for contracting the illness.  Most families affected by this illness are looking to the CDC for immediate answers. 

 

I am asking that you make certain that this grave situation receives the immediate and full attention that any potentially infectious illness posing a public health threat would receive from the public health sector.  Specifically, I am requesting that you ask the CDC to make the investigation of Morgellons disease a priority, to expedite and expand the upcoming investigation, and to immediately inform the US medical community regarding the CDC Morgellons investigation. 

 

As you may be aware, the Centers for Disease Control and Prevention (CDC) recently hired an outside vendor to conduct the long-awaited CDC investigation of the disease.  The current investigation is an epidemologic investigation, and I am asking that the CDC quickly move from an epidemiologic investigation to aggressively searching for a treatment and eventual cure for this disease. It should be noted that statistics gathered by the Morgellons Research Foundation indicate that 37 percent of sufferers have multiple family members who are affected, and that one out of six affected family members is a child age twelve or under.   
 

I respectfully and emphatically request that you ask the CDC to contact state medical boards and physician groups as soon as possible, to inform these groups that CDC will soon be conducting this investigation. Since the majority of US physicians are unaware of the symptoms of Morgellons disease, it is critical that all physicians who may encounter these patients are informed about this public health investigation, as well as the distinct symptoms of this disease as soon as possible. 

Numerous phone calls and letters have poured into the CDC from the public over the past few years asking for help, and the CDC has already received letters from 40 members of Congress asking them to expedite the Morgellons investigation.  CDC has received more inquiries regarding Morgellons disease than any issue in the agency's history.

I appreciate your rapid attention to this matter and seek your personal commitment to ending the suffering caused by Morgellons disease. 

 

Sincerely,

  

2.  GoodSearch Search Engine
The GoodSearch org search engine, who is working with 47,000 charities to raise money through internet searches, has chosen the Morgellons Research Foundation as their "charity of the day" for November 20, 2007.   We thank Goodsearch for this wonderful opportunity which comes at a critical time for our group as we struggle to raise enough money to adequately fund the five research scientists who have submitted their formal research proposals to the MRF. If you do not already use Goodsearch as your search engine, please consider using them as your search engine and raising funds for the MRF as you search in the future.

 

To raise money for the MRF: Click on the link: www.goodsearch.com.  Enter "Morgellons Research Foundation" as the charity and press "verify". Conduct your search like you always do and you will help raise money to support Morgellons disease research!

 

3.  Our Registration Database is operational again. 

If you  have not registered with us already, please do so.  Your personal information will be kept confidential.  We use our database to quantify the number of people who are suffering from the disease, and to track important demographic and geographic information which may provide important information about the disease.  

4. Update sent by the MRF to the CDC

Please see the email below, which the MRF sent to the CDC on Nov.3

 

To: CDC Morgellons Task Force

From: Morgellons Research Foundation

 

Topics:

1.  Statistics for families reporting Morgellons disease symptoms.  
2. Veterinarians reporting Morgellons disease in animals
3. Possible blood transfusion related case of Morgellons disease.

Please be aware of the following information:

Between the period of October 15, 2007 and November 1, 2007 the Morgellons Research Foundation (MRF) received information from 115 families who felt they fit the criteria for Morgellons disease, and registered with the MRF. 

Of the 115 families who registered with the MRF during this two week time period, the following applies:

37 percent of these families report symptoms in multiple family members.
The total number of individuals included in these registrations= 201
The total number of children 12 years old and under included in these
registrations= 32  ( 16% of these individuals are children ages 12 and under)

We have been contacted by veterinarians reporting this disease in animals, including one veterinarian who has the illness herself, as does her dog.  We have also been contacted by a RN with long-standing illness who reports that her mother's illness distinctly began after the mother was transfused with the RN's blood.

I hope that you find this information useful.  Please let me know if you need additional information, or if we can be of any assistance to you.

 

 

5.  Thank you to Congress

The MRF would like to extend a sincere thank you to the following 40 members of Congress who have written to or contacted the CDC and asked that they expedite their investigation of Morgellons disease.  (If you know of other members of congress who have also written, please let us know and we will add them to the list.):

 

1. U.S Representative Mike Rogers, 3rd District AL, 4 letters and one personal visit to CDC

2. U.S. Senator from IA, Tom Harkin, numerous verbal staff communications with CDC

3. U.S. Senator from CA Barbara Boxer,  7 letters
4. U.S. Senator from FL Bill Nelson, 6 letters
5. U.S. Senator from AZ John McCain,  3 letters
6  U.S. Senator from CT Joseph Lieberman,  2 letters
7. U.S. Senator from WA Maria Cantwell,  2 letters
8. U.S. Senator from UT Robert Bennett,  2 letters
9. U.S. Senator from  IL Barack Obama,  2 letters
10. U.S. Senator from GA  Saxby Chamblis 
11. U.S. Senator from VA George Allen
12. U.S. Senator from OR Ron Wyden
13. U.S. Senator from  NC Richard Burr
14. U.S. Senator from  AZ Jon Kyl
15. U.S. Representative Martin Sabo, 5th District MN, 2 letters
16  U.S. Representative  Ron Paul, 14th District TX
17. U.S. Representative Gary Miller, 42nd District CA
18. U.S. Senator from AL Richard Shelby, 2 letters
19. U.S. Senator from FL Mel Martinez
20. U.S. Senator from CA Dianne Feinstein
21. U.S. Senator from TX Kay Bailey Hutchison
22. U.S. Senator from TX John Cornyn
23. U.S. Senator from GA Johnny Isakson
24. U.S. Senator from PA Rick Santorum
25. U.S. Senator from NY Hillary Rodham Clinton
26. U.S. Senator from NY Charles Schumer
27. U.S. Senator from NJ Frank Lautenberg
28. U.S. Senator from CT Christopher Dodd
29. U.S. Senator from SC Jim DeMint
30. U.S. Representative  John Mica, 7th District FL
31. U.S. Senator from IL Richa rd Durbin
32. U.S. Senator from FL Robert Graham

33. U.S. Representative Henry Brown,1st District SC

34. U.S. Representative Peter DeFazio, 4^th District OR

35. U.S. Senator from HI  Daniel Inouye

36. U.S. Senator from HI  Daniel Akaka

37. U.S. Representative Jane Harmon, 36^th District CA

38. U.S. Senator from UT Orrin G. Hatch

39. U.S. Senator from MD Barbara Mikulski

40. U.S. Senator from  OH George Voinovich