MRF
Morgellons Research Foundation
PO Box 10353
Pittsburgh , PA 15234-9998
www.Morgellons.org
August
2007 Newsletter
Dear
MRF registrants:
We have several good things to tell you. First, we would like to thank
each of you for all your efforts on behalf of the disease and also for
remaining strong and hopeful.
Fundraising
Fundraising efforts
began in earnest on July 1, 2007. So far we have raised $3317.50.
Thank you so much to everyone who contributed.
Please
see the following for a description of some of the exciting research currently
taking place and new proposals that we have received for additional research.
We need to raise at least $233,000 to fund the biomedical research alone. Please
join us in our fundraising efforts. We have developed a brochure that you
can distribute to your friends and family which describes the disease and the
research opportunities. Please email advocacy@morgellons.org
to request copies of this brochure. Also please check out our
contributions page for ways to contribute without spending a dime. We want
to thank one of our volunteers who helped out this month by submitting a
grant proposal on the MRF's behalf to help fund Morgellons research.
Research
We
have added a new research page to our website. This page includes some Q
& A's and an update on research findings. Please check it out.
Here
is an excerpt:
What
research has the MRF funded so far?
To date, our funding has been very limited. We have been able to provide
“start up” funding to researchers at Oklahoma State University, California
State University – Hayward, and the State University of NY – Stonybrook.
We have also provided samples (and paid the related shipping costs) to a
scientist at a fourth university and a microbiologist at Clongen Laboratories,
who are volunteering their time and resources to investigate this disease.
In addition, the MRF has helped fund the collection and collation of laboratory
data, as well as demographic, history and physical information from 25
Morgellons patients who were examined by two physicians. We will share information
from the analysis of this data with you when the final report of this data is
complete.
We
have recently received several new research proposals described below and are
hoping to raise funds for these new projects, as well as raise funds to support
those scientists who have ongoing projects so that they can devote more time to
conducting Morgellons research.
Why
hasn't more research been done?
The MRF was established in 2002. Our primary focus during the first
several years was to raise public awareness of the disease. In the
beginning, the foundation was responsible for taking a disease, which was unnamed
and largely misunderstood, from obscurity into the world of science.
The MRF was very successful in this endeavor. Thanks
to the efforts of Ken Cowles, MRF media director, and individuals with the
illness, Morgellons
disease has been covered extensively in the media, including segments on CNN,
NBC, ABC, and has received coverage in most of the major newspapers. These
initial steps which, although slower than any of us would have liked, laid the
foundation for the current scientific interest in the disease. Without public
awareness of the disease, the scientists who have now expressed interest in
conducting Morgellons research would not know about the disease, and there is
the possibility that the Centers for Disease Control and Prevention would not be
initiating an investigation.
Research
has also been limited due to lack of funds. Several researchers are
volunteering their spare time to do this work. Since we have not been able
to fully fund any researcher to date, no scientist has been able to fully devote
all of his or her time to Morgellons research.
What
new research proposals has the MRF received?
We have recently been approached by a major biomedical research institute and
researchers at two additional universities who would like to get involved.
Contributions are desperately needed to fund these important projects.
We
believe that the answers to this disease will be found as the result of the
efforts of multiple researchers at different facilities each contributing their
own perspectives, talents and resources.
What
is the focus of the research at the Biomedical Institute that submitted a
proposal to the MRF?
This research would focus on uncovering the differences in the blood of people
with Morgellons and those who do not have the disease. The short term
goal of the research is to identify markers that would allow us to diagnose
Morgellons disease. The long term goal is aimed at using these markers to
understand the cause of the disorder itself. We would need to raise the
money to pay for this research before this work can begin.
What
is the focus of the University studies and the Private lab?
Research at several of the universities is focused on examining the chemical
composition of the fibers and also examining them microscopically. In addition,
DNA analysis is being performed on skin specimens. No conclusions
have been reached so far from this research.
Where
do the donations go?
The MRF is operated by an unpaid board of directors, officers, and
volunteers who are working out of their homes, so that the bulk of our donations
go to conducting research and raising awareness.
Has
the MRF reached out to private foundations for research funding?
The MRF has reached out to dozens of private foundations to request funding.
Unfortunately, so far, our efforts have been unsuccessful. It is
very difficult to receive this type of support for a disease that is not yet
recognized by the medical community, and seemingly only affects a relatively
small number of people. Once the disease is recognized, we believe
that this type of funding will become more available. Until then, we must
raise funds from those who suffer from the disease, and their friends and
relatives and other concerned citizens.
Why
not just wait for the CDC?
Although
we are encouraged by the CDC’s involvement, we realize that their planned
epidemiological study is just an early step in a long process to find the cure
for this disease. We hope to move quickly towards our goal of
finding a cure by enlisting the help of multiple, highly motivated researchers.
As with all serious, complex diseases, the work needed to find
a cure involves efforts from multiple researchers. We will only accomplish
this goal if researchers, both in and outside of government agencies, all
work together as quickly as possible.
Note:
We certainly respect the fact that not all researchers wish to have intense
public attention, and we leave it up to the individual research group to decide
whether to be public. We hope that people will understand that this is an
individual decision.
Oklahoma
State University
Dr.
Randy Wymore has announced the creation of the Oklahoma State University Center
for Health Sciences Center for the Investigation of Morgellons Disease.
Please see their website for more information.
CDC Announcements
The
CDC announced that they would be pairing with Kaiser to perform an
epidemological investigation of Morgellons disease. Information can be
found on this website: http://www.fbodaily.com/archive/2007/07-July/16-Jul-2007/FBO-01342706.htm
CDC
Statement Regarding Morgellons Disease (August 1, 2007)
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, 20074.2. Database of
potential cases (study cohort) November 30, 20074.3. 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,
20084.4. All skin biopsy specimens and fiber samples collected from
case-patients . March 1, 20084.5. 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,
20084.6. 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
http://www.fbo.gov/spg/HHS/CDCP/PGOA/Reference-Number-2007-Morgellons/Attachments.html
Senate
Appropriations Committee increased CDC’s budget for Morgellons Research
We
want to thank our registrants who joined the MRF in either meeting with or
writing senators who are on the Senate Appropriations Committee. It
was due to these efforts that the funding appropriated for the CDC's
Morgellons research was increased.
Thank
you Ken Cowles
We
would like to extend our sincere gratitude to Kenneth (Ken) Cowles, MRF Director
of Media and Public Relations, for working diligently and consistently for six
years to help all people with Morgellons disease. Although
Ken does not have Morgellons disease, nor does anyone in his family,
he has devoted an enormous amount of his personal time to help
raise public awareness of the disease. Thousands of people with
Morgellons disease have reported that they became aware of others with
their illness only after seeing media coverage which Ken has coordinated over
the years. Ken's contacts in the media led to the initial KTVU media
report of Morgellons disease in March 2004. This initial report was the
beginning of a public awareness campaign which Ken directed and devoted himself
to daily. To Ken Cowles, we would like to say a sincere and heartfelt
THANK YOU for caring about the plight of other people, and for a job well done!
Thank
you again for all of your help and determination!
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 Media and PR
Morgellons Research Foundation