February 2008 Newsletter
Morgellons Research Foundation
PO Box 357
Guilderland, NY 12084-0357
Topics:
1. Notifying U.S. medical and public health communities
2. New letter to Congress
To MRF Registrants:
We are so grateful to each one of you for your efforts notifying members of
Congress about Morgellons disease.
Each letter you sent to Congress helped encourage the Centers for Disease
Control and Prevention (CDC) to investigate this illness. As the result of our
combined efforts, the CDC has begun an epidemiological investigation of
Morgellons or "Unexplained Dermopathy" in Northern California which should be
complete next year.
In the meantime, many clinicians and government public health agencies in the
U.S. are still unaware of the CDC investigation and the symptoms of this
devastating illness. The MRF has received registrations from nearly 700
families affected by this illness since the CDC announced the start of their
investigation in the popular press last month. The majority of these families
report that their physicians were unaware of the CDC investigation and symptoms
of the illness. Many physicians still assume the patient is exhibiting symptoms
of psychosomatic illness when they describe the skin and other physical symptoms
of Morgellons disease. Unless clinicians happen to see a news report in the
popular press, they would probably not be aware of the CDC investigation
We feel that now is the appropriate time for the CDC to notify the medical and public health communities in the U.S. about this investigation and symptoms of the illness.
Although we realize the CDC investigation is just beginning and there are no
results for them to report, we feel it will benefit the medical community to be
informed about this situation. We feel strongly that it will benefit patients if
their medical providers are aware of the symptoms of the unusual condition the
CDC is currently investigating. Please see the letter below, which you can send
to your representatives to ask for their help with the urgent matter of
notifying the U.S. medical and public health communities about Morgellons
disease.
Thank you once again, for your continued support and willingness to become
involved.
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
Candice Han, Director of Media and Public Relations
Morgellons Research Foundation
The Morgellons Research Foundation is a 501(c)3 non-profit organization
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The fastest way to send the following letter to Congress is via FAX. Postal
mail is also effective, but is a much slower process due to government mail
screening. We do not recommend email, since your signature is important.
Your representatives' contact information can be found at:
www.senate.gov
www.house.gov
(SAMPLE LETTER TO US SENATORS AND REPRESENTATIVES)
Your name and address here
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: Notifying US Medical Community about Morgellons disease
Importance: Urgent
Dear:
As you may be aware, the Centers for Disease Control and Prevention (CDC) is
currently investigating an unexplained and debilitating condition that has
emerged as a public health concern. This condition, which is referred to as
"Morgellons disease" or "Unexplained Dermopathy" involves highly unusual skin
and other symptoms which cause an immense amount of suffering for the families
who are affected. The disease has received a great deal of attention from
Congress with more than 40 members of Congress contacting the CDC by letter,
telephone, or in person, to ask the agency to expedite this important public
health investigation. The CDC epidemiological investigation of Morgellons
disease is now underway in Northern California and is expected to take 12 months
or longer to complete.
In the meantime, many clinicians and public health agencies in the U.S. are
still unaware of the CDC investigation and the symptoms of this devastating
illness. The Morgellons Research Foundation, a nonprofit organization which
has been accepting registration information from patients with the illness since
2002, has received registrations from nearly 700 families affected by this
illness since the CDC announced the start of their investigation in the popular
press one month ago. The majority of these affected families report that their
physicians were unaware of the CDC investigation and symptoms of the illness.
Many physicians still assume the patient is exhibiting symptoms of a
psychosomatic illness when they describe the skin and other physical symptoms of
Morgellons disease. Unless clinicians happen to see a news report in the popular
press, they would probably not be aware of the CDC investigation.
I feel that now is the appropriate time for the CDC to notify both the U.S. medical and public health communities about the Morgellons disease investigation and symptoms of the illness.
Although I realize that the CDC investigation is just beginning and there are no results to report, I feel it will benefit the medical and public health communities to be informed about this investigation. I feel that it will benefit all U.S. Citizens if their medical providers are immediately made aware of the symptoms of Morgellons disease. Therefore I am asking you to contact the CDC and ask them to quickly and methodically alert the medical and public health communities about their investigation of Morgellons disease and symptoms of the illness.
Please ask the CDC to describe the disease to these medical and public health
communities precisely as they did in the following 2007 CDC document. An
important excerpt of this CDC document follows:
"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."
Please review the full 2007 document, which gives additional details on the CDC Morgellons Investigation.
Full CDC Document: http://www.morgellons.org/RFQ.htm
Please contact me as soon as possible to tell me how you will address my
concerns.
Sincerely,
Your Constituent