Morgellons Research Foundation Newsletter

[pez1103]

MRF
Morgellons Research Foundation
a non-profit organization
PO Box 10353
Pittsburgh, PA 15234-9998

April 11, 2007

To all Morgellons Research Foundation Registrants:

We have several things to tell you, and are also asking for your immediate help:

1. Email communication:
We apologize for our past email communication problems. We have recently contracted with a new email service provider and hope that these problems will now be a thing of the past. We hope to send you more frequent emails in the future, which has always been our intent. Thank you for your patience while we worked to resolve this issue.

2. Meetings in Washington DC:
The Executive Director of the Morgellons Research Foundation, along with constituents with Morgellons disease, has met with staff of U.S. Senators in Washington, D.C. in the past few months. The MRF will participate in additional meetings in Washington, D.C. in the months ahead. The purpose of these meetings is to educate politicians and their staff and to enlist their help in resolving what we feel is a crisis situation.

3. Congressional hearing request:
We are asking for your immediate help in doing the following:
Please contact the US Senators for your state, as well as your US Representative, as quickly as possible. A sample letter is below, along with the names of the "key" senators and representatives. We are now recommending that we all immediately ask for a congressional oversight hearing to investigate the response to the Morgellons disease situation in the U.S. As we have realized from the quick response of the Senate to the recent pet food contamination crisis, a government oversight hearing is the best route to determine if a government agency is acting appropriately. By holding an immediate oversight hearing in order to investigate the FDA's response to the recent pet food contamination crisis, congress will quickly learn if that crisis was handled correctly.


Below is an excerpt from a news article about the planned pet food oversight hearing:
" Senator Richard J. Durbin announced a congressional hearing on the Food and Drug Administration's investigation (of contaminated pet food). Durbin, an Illinois Democrat who is Senate majority whip, said he would hold an oversight hearing on the FDA's response perhaps as early as next week. "The system broke down," he said. "It's not just about contaminated food killing pets, it's a system that failed."



See www.senate.gov and www.house.gov for your politicians' contact information. Even if you have written to them in the past, now is a critical time to do this again. It has been almost a year since the U.S. Morgellons disease public health investigation in CA was announced. To anyone's knowledge, no start date for the investigation has been announced and nothing has been learned about how to treat or contain this disease. FAXs to politicians are always preferred. If you cannot FAX, please go the official’s website and send an email.


4. Website content:
If you have not visited our website recently, please check www.Morgellons.org for new content. We have recently had maps created which show MRF registrants in the US, as well as more detailed maps of CA, TX, and FL. These maps can be seen on the MRF "Geography" webpage.

5. GoodSearch and non-profit organizations:
We would like to thank Caroline in New York for contacting GoodSearch on our behalf. GoodSearch is a new search engine which raises money for non-profit organizations. Thanks to Caroline, GoodSearch now lists the MRF among the many non-profit organizations they are helping.

GoodSearch donates half its revenue, about a penny per search, to the charities its users designate. You use it just as you would any search engine, and it's powered by Yahoo!, so you get great results.

Just go to www.goodsearch.com and be sure to enter Morgellons Research Foundation as the charity you want to support. Just 500 of us searching four times a day will raise about $7300 in a year without anyone spending a dime!

Please spread the word!

A. Click on the link: www.goodsearch.com
B. Enter "Morgellons Research Foundation" as the charity and press "verify"
C. Conduct your search as you always do
D. You have just helped raise some money...it’s that easy!!

6. JAAD Letter to the editor:
Please be sure to read Dr. Harvey's letter to the editor, which appeared in the Journal of the American Academy of Dermatology last month:

Harvey, WT. Morgellons disease. J Am Acad Dermatol. 2007;56:705-706.


http://www.eblue.org/article/PIIS019...01958/fulltext

7. We would like to welcome the newest member of the Morgellons Research Foundation's Scientific Advisory Board, Ahmed Kilani, Ph.D., MT(ASCP) Dr. Kilani is a microbiologist who is doing his personal best to help us find answers to this confusing and tragic situation.



Our warmest wishes for strength, perseverance and a quick road to recovery for all of you, all of us, and all of our children. Please see key politicians and sample politician letter below.


From:
William T. Harvey, M.D., M.P.H., M.S., Chairman
Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director

Janelle Fossen, Secretary
Dale Cowher, CPA, Treasurer
Roy Houchins
Board of Directors

Ken Cowles, Director of Media and Public Relations
Morgellons Research Foundation



“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
~Kahil Gibran
__________________________________________________ ___________________________

Key Senators and Representatives:



It is important that you contact both of your US senators and your US Representative. The officials listed below have the most influence over health issues, so contacting them, if you live in their jurisdiction, is particularly important.



Key congresspersons - Please send your correspondence to the attention of the contact person listed below.



State
Congressman
Contact Person

CA
Waxman
Steven Cha, M.D.

WI
Obey
Christina Hamilton

NJ
Pallone
Robert Clark

CA
Jerry Lewis
Jennifer Wickre

MI
Dingle
Jack Maniko

TX
Barton
Aarti Shah

OH
Regula
Viquar Ahmav





Key Senators – Please send your correspondence to the attention of the contact person listed below.



State
Senator
Contact Person

TN
Alexander
Austin Payne

NM
Bingaman
Frederick Isasi

NC
Burr
Jennifer Ware

NY
Clinton
Ann Gavaghan

MS
Cochran
Will Crump

ID
Craig
Theresa Vawter

CT
Dodd
Sherry Kaiman

IL
Durbin
Mayra Alvarez

NH
Gregg
Richard W

PA
Specter
Heather Blum

IA
Harkin
Jenelle Krishnamoorthy

UT
Hatch
Guy Clifton

HI
Inouye
Rachel Armstrong

GA
Isakson
Tyler Thompsom

MA
Kennedy
Celeste Torio

WI
Kohl
Mary Beth Stanton

LA
Landrieu
Stefanie Jones

MD
Mikulski
Keysha Brooks- Coley

RI
Reed
Lisa German-Foster

KS
Roberts
Jennifer Swenson

AL
Shelby
Ryan Welch

AK
Stevens
Liz Connell

FL
Martinez
Mike Bassett

FL
Nelson
Julie Stuart

CA
Boxer
Carina Armenta

CA
Feinstein
Craig Paridy

TX
Cornyn
Katherine Coughlin

TX
Hutchinson
William McKee

WY
Enzi
Shana Christrup





Sample letter:



Subject: Morgellons Disease- Immediate Government Oversight Hearing Request

Importance: Urgent



Dear:



I am respectfully requesting that you conduct an immediate government oversight hearing to learn why the CDC public health response to the tragic Morgellons disease situation in the U.S. has been so slow.



I am also requesting that you write to the CDC as soon as possible to urge them to commence their long-planned investigation of Morgellons disease, in order to find answers for the thousands of Americans suffering from this devastating illness. It has been nearly one year since the CDC announced their investigation of Morgellons disease in California. To anyone's knowledge, no start date for the investigation has been announced and nothing has been learned about how to treat or contain this disease.



Dozens of members of the U.S. Senate and dozens of members of the U.S. Congress have written to the CDC over the past four years, and asked that the agency rapidly determine the cause of Morgellons disease, which is suspected to be a newly emerging infectious disease with no known cause or cure. In addition to members of the Senate and Congress, hundreds of phone calls and letters have poured into the CDC from the public during this same time period. We have learned that a significant percentage of all recent public inquiries to the CDC have involved requests for information about Morgellons disease. 9,780 families have reported suffering from the symptoms of this serious, frightening and debilitating disease and have been desperately waiting for government help. Half of these families have reported these symptoms to the Morgellons Research Foundation (MRF), the non-profit organization which has been tracking this disease since 2002, within the past six months alone.



Please conduct this oversight hearing as soon as possible to find out why the U.S. public health preparedness system has not discovered anything about the cause or treatment of this disease. As I realize from the quick response of the Senate by holding an immediate oversight hearing to investigate FDA’s response to the recent pet food contamination crisis, an oversight hearing is the quickest route to finding out how that system responded. It is imperative that we learn if the Morgellons disease situation has been addressed properly by those responsible for identifying newly emerging infectious diseases and safeguarding the public health of US Citizens.



The following are the reasons why I believe that these actions are necessary:

The cause and modes of transmission are unknown; therefore this disease may represent a serious public health threat to our nation.
The optimal treatment for this disease has not yet been determined, although anti-microbial agents have been found to be useful in some cases.
Most people with this illness report the inability to think or function normally, and many are now unable to work. In addition to the tremendous human suffering caused by this illness, it may soon place a huge financial burden on society, as many people with this disease are currently collecting social security disability, and many others are applying for it.
The disease affects all age groups, including children, and some of these children are no longer able to attend school.
The number of U.S citizens reporting this disease to the MRF has doubled in the past six months, which suggests either that awareness of the illness and the MRF is spreading or that the disease may be spreading in our nation. We feel that the number of MRF registrants represents a fraction of the true number of people with this illness.
The disease is frequently misdiagnosed as Delusional Parasitosis. Sadly, patients are often dismissed by health care practitioners, and have difficulty receiving treatment for very serious physical ailments.
More than one hundred doctors have contacted the MRF seeking treatment advice for patients, whom they believe have Morgellons disease.
Fast-paced research is desperately needed to discover the cause of Morgellons disease, and to pinpoint optimal treatments.
I appreciate your consideration of this vital issue. Please contact me as soon as possible to let me know how you will address my concerns.



Your Constituent,

[pez1103]

MRF
Morgellons Research Foundation
a non-profit organization
PO Box 10353
Pittsburgh, PA 15234-9998

April 11, 2007

To all Morgellons Research Foundation Registrants:

We have several things to tell you, and are also asking for your immediate help:

1. Email communication:
We apologize for our past email communication problems. We have recently contracted with a new email service provider and hope that these problems will now be a thing of the past. We hope to send you more frequent emails in the future, which has always been our intent. Thank you for your patience while we worked to resolve this issue.

2. Meetings in Washington DC:
The Executive Director of the Morgellons Research Foundation, along with constituents with Morgellons disease, has met with staff of U.S. Senators in Washington, D.C. in the past few months. The MRF will participate in additional meetings in Washington, D.C. in the months ahead. The purpose of these meetings is to educate politicians and their staff and to enlist their help in resolving what we feel is a crisis situation.

3. Congressional hearing request:
We are asking for your immediate help in doing the following:
Please contact the US Senators for your state, as well as your US Representative, as quickly as possible. A sample letter is below, along with the names of the "key" senators and representatives. We are now recommending that we all immediately ask for a congressional oversight hearing to investigate the response to the Morgellons disease situation in the U.S. As we have realized from the quick response of the Senate to the recent pet food contamination crisis, a government oversight hearing is the best route to determine if a government agency is acting appropriately. By holding an immediate oversight hearing in order to investigate the FDA's response to the recent pet food contamination crisis, congress will quickly learn if that crisis was handled correctly.


Below is an excerpt from a news article about the planned pet food oversight hearing:
" Senator Richard J. Durbin announced a congressional hearing on the Food and Drug Administration's investigation (of contaminated pet food). Durbin, an Illinois Democrat who is Senate majority whip, said he would hold an oversight hearing on the FDA's response perhaps as early as next week. "The system broke down," he said. "It's not just about contaminated food killing pets, it's a system that failed."



See www.senate.gov and www.house.gov for your politicians' contact information. Even if you have written to them in the past, now is a critical time to do this again. It has been almost a year since the U.S. Morgellons disease public health investigation in CA was announced. To anyone's knowledge, no start date for the investigation has been announced and nothing has been learned about how to treat or contain this disease. FAXs to politicians are always preferred. If you cannot FAX, please go the official’s website and send an email.


4. Website content:
If you have not visited our website recently, please check www.Morgellons.org for new content. We have recently had maps created which show MRF registrants in the US, as well as more detailed maps of CA, TX, and FL. These maps can be seen on the MRF "Geography" webpage.

5. GoodSearch and non-profit organizations:
We would like to thank Caroline in New York for contacting GoodSearch on our behalf. GoodSearch is a new search engine which raises money for non-profit organizations. Thanks to Caroline, GoodSearch now lists the MRF among the many non-profit organizations they are helping.

GoodSearch donates half its revenue, about a penny per search, to the charities its users designate. You use it just as you would any search engine, and it's powered by Yahoo!, so you get great results.

Just go to www.goodsearch.com and be sure to enter Morgellons Research Foundation as the charity you want to support. Just 500 of us searching four times a day will raise about $7300 in a year without anyone spending a dime!

Please spread the word!

A. Click on the link: www.goodsearch.com
B. Enter "Morgellons Research Foundation" as the charity and press "verify"
C. Conduct your search as you always do
D. You have just helped raise some money...it’s that easy!!

6. JAAD Letter to the editor:
Please be sure to read Dr. Harvey's letter to the editor, which appeared in the Journal of the American Academy of Dermatology last month:

Harvey, WT. Morgellons disease. J Am Acad Dermatol. 2007;56:705-706.


http://www.eblue.org/article/PIIS019...01958/fulltext

7. We would like to welcome the newest member of the Morgellons Research Foundation's Scientific Advisory Board, Ahmed Kilani, Ph.D., MT(ASCP) Dr. Kilani is a microbiologist who is doing his personal best to help us find answers to this confusing and tragic situation.



Our warmest wishes for strength, perseverance and a quick road to recovery for all of you, all of us, and all of our children. Please see key politicians and sample politician letter below.


From:
William T. Harvey, M.D., M.P.H., M.S., Chairman
Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director

Janelle Fossen, Secretary
Dale Cowher, CPA, Treasurer
Roy Houchins
Board of Directors

Ken Cowles, Director of Media and Public Relations
Morgellons Research Foundation



“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
~Kahil Gibran
__________________________________________________ ___________________________

Key Senators and Representatives:



It is important that you contact both of your US senators and your US Representative. The officials listed below have the most influence over health issues, so contacting them, if you live in their jurisdiction, is particularly important.



Key congresspersons - Please send your correspondence to the attention of the contact person listed below.



State
Congressman
Contact Person

CA
Waxman
Steven Cha, M.D.

WI
Obey
Christina Hamilton

NJ
Pallone
Robert Clark

CA
Jerry Lewis
Jennifer Wickre

MI
Dingle
Jack Maniko

TX
Barton
Aarti Shah

OH
Regula
Viquar Ahmav





Key Senators – Please send your correspondence to the attention of the contact person listed below.



State
Senator
Contact Person

TN
Alexander
Austin Payne

NM
Bingaman
Frederick Isasi

NC
Burr
Jennifer Ware

NY
Clinton
Ann Gavaghan

MS
Cochran
Will Crump

ID
Craig
Theresa Vawter

CT
Dodd
Sherry Kaiman

IL
Durbin
Mayra Alvarez

NH
Gregg
Richard W

PA
Specter
Heather Blum

IA
Harkin
Jenelle Krishnamoorthy

UT
Hatch
Guy Clifton

HI
Inouye
Rachel Armstrong

GA
Isakson
Tyler Thompsom

MA
Kennedy
Celeste Torio

WI
Kohl
Mary Beth Stanton

LA
Landrieu
Stefanie Jones

MD
Mikulski
Keysha Brooks- Coley

RI
Reed
Lisa German-Foster

KS
Roberts
Jennifer Swenson

AL
Shelby
Ryan Welch

AK
Stevens
Liz Connell

FL
Martinez
Mike Bassett

FL
Nelson
Julie Stuart

CA
Boxer
Carina Armenta

CA
Feinstein
Craig Paridy

TX
Cornyn
Katherine Coughlin

TX
Hutchinson
William McKee

WY
Enzi
Shana Christrup





Sample letter:



Subject: Morgellons Disease- Immediate Government Oversight Hearing Request

Importance: Urgent



Dear:



I am respectfully requesting that you conduct an immediate government oversight hearing to learn why the CDC public health response to the tragic Morgellons disease situation in the U.S. has been so slow.



I am also requesting that you write to the CDC as soon as possible to urge them to commence their long-planned investigation of Morgellons disease, in order to find answers for the thousands of Americans suffering from this devastating illness. It has been nearly one year since the CDC announced their investigation of Morgellons disease in California. To anyone's knowledge, no start date for the investigation has been announced and nothing has been learned about how to treat or contain this disease.



Dozens of members of the U.S. Senate and dozens of members of the U.S. Congress have written to the CDC over the past four years, and asked that the agency rapidly determine the cause of Morgellons disease, which is suspected to be a newly emerging infectious disease with no known cause or cure. In addition to members of the Senate and Congress, hundreds of phone calls and letters have poured into the CDC from the public during this same time period. We have learned that a significant percentage of all recent public inquiries to the CDC have involved requests for information about Morgellons disease. 9,780 families have reported suffering from the symptoms of this serious, frightening and debilitating disease and have been desperately waiting for government help. Half of these families have reported these symptoms to the Morgellons Research Foundation (MRF), the non-profit organization which has been tracking this disease since 2002, within the past six months alone.



Please conduct this oversight hearing as soon as possible to find out why the U.S. public health preparedness system has not discovered anything about the cause or treatment of this disease. As I realize from the quick response of the Senate by holding an immediate oversight hearing to investigate FDA’s response to the recent pet food contamination crisis, an oversight hearing is the quickest route to finding out how that system responded. It is imperative that we learn if the Morgellons disease situation has been addressed properly by those responsible for identifying newly emerging infectious diseases and safeguarding the public health of US Citizens.



The following are the reasons why I believe that these actions are necessary:

The cause and modes of transmission are unknown; therefore this disease may represent a serious public health threat to our nation.
The optimal treatment for this disease has not yet been determined, although anti-microbial agents have been found to be useful in some cases.
Most people with this illness report the inability to think or function normally, and many are now unable to work. In addition to the tremendous human suffering caused by this illness, it may soon place a huge financial burden on society, as many people with this disease are currently collecting social security disability, and many others are applying for it.
The disease affects all age groups, including children, and some of these children are no longer able to attend school.
The number of U.S citizens reporting this disease to the MRF has doubled in the past six months, which suggests either that awareness of the illness and the MRF is spreading or that the disease may be spreading in our nation. We feel that the number of MRF registrants represents a fraction of the true number of people with this illness.
The disease is frequently misdiagnosed as Delusional Parasitosis. Sadly, patients are often dismissed by health care practitioners, and have difficulty receiving treatment for very serious physical ailments.
More than one hundred doctors have contacted the MRF seeking treatment advice for patients, whom they believe have Morgellons disease.
Fast-paced research is desperately needed to discover the cause of Morgellons disease, and to pinpoint optimal treatments.
I appreciate your consideration of this vital issue. Please contact me as soon as possible to let me know how you will address my concerns.



Your Constituent,

[ladycolorado]

pez, thanks for posting this, i wanted to and did not get around to it. looks like the mrf is tired of the cdc, as we all are. more and more are falling victim to this horrid disease, including children and infants, also animals. how many to get sick will it take for the cdc to take action? i say the head of the cdc should be replaced, as he always has seemed sceptical of the disease, and is not an objective individual, he has a preformed predjudice which makes him nonchalant about the destruction of lives (even though not fatal), financial decimation, and the ruination of families.the fact that there is so much eveidence, even in our blood, and neurological damage and loss of body function is more than enough reason to investigate. it can even penetrate latex gloves, which makes many medical people get sick with morgellons disease. to me there is nothing worse then a closed mind, one who purposely ignores facts to remain in an ignorant state at the cost of other individuals when they are supposed to be protecting them. (LC)

[ladycolorado]

pez, thanks for posting this, i wanted to and did not get around to it. looks like the mrf is tired of the cdc, as we all are. more and more are falling victim to this horrid disease, including children and infants, also animals. how many to get sick will it take for the cdc to take action? i say the head of the cdc should be replaced, as he always has seemed sceptical of the disease, and is not an objective individual, he has a preformed predjudice which makes him nonchalant about the destruction of lives (even though not fatal), financial decimation, and the ruination of families.the fact that there is so much eveidence, even in our blood, and neurological damage and loss of body function is more than enough reason to investigate. it can even penetrate latex gloves, which makes many medical people get sick with morgellons disease. to me there is nothing worse then a closed mind, one who purposely ignores facts to remain in an ignorant state at the cost of other individuals when they are supposed to be protecting them. (LC)