Keeping You in the Loop!
Welcome to the CEHF newsletter, Keeping You in the Loop designed to communicate news from the Charles E. Holman Foundation, whose mission is to empower Morgellons patients through scientific research, medical education, public awareness and patient advocacy. Our newsletter will be distributed quarterly to those who have expressed interest in Morgellons Disease
Join us March 24th and 25th for the 5th Annual Morgellons Disease conference. We have lined up a very exciting agenda and hope to see you there! To learn more about the conference, please visit www.thecehf.org.
5th Annual Conference on Morgellons Disease
New Members Join the Charles E. Holman Foundation Advisory Panel
Dr. Peter Mayne is a GP Dermatologist with a large, active practice in Laurieton, NSW, Australia. Dr. Mayne joins our efforts with an optimistic outlook for 2012. He is a pioneer in recognizing Morgellons Disease within dermatology and in addressing it as a multi-systemic illness, not as just a skin issue. After reviewing the evidence for himself, he has quickly become a strong force in educating his peers as well as all members of the medical community. He recently gave a well-received presentation on Morgellons Disease at a Dermatological Medical Conference held in Cardiff, Wales, England. It is with renewed hope that combining his knowledge and expertise with others on our research team, we will soon prove to the world that Morgellons disease is a real physiological and debilitating medical condition with unique pathology.
Dr. Robert Allan graduated from the University of Edinburgh with a specialty in Parasitology. His post-graduate studies at the University of Glasgow took him into research on the human immune system. He then moved to South America where he was the Director of Research in a new center, CAICET, studying tropical diseases in the Amazon territory of southern Venezuela where he continued his interest in the immune response to parasites. Dr. Allan worked for several years with a Venezuelan oil company, Maraven, developing and establishing health programs in isolated rural communities.
Dr. Allan is retired from active science but keeps in touch helping his microbiologist wife, Marianne Middelveen, with her research into Morgellons. He lives in Calgary, Alberta with his wife and their 2 dogs.
Learn more about the Charles E. Holman Foundation and our Advisory Panel.
Documentary on Morgellons Disease Airing in Japan
Mid December marked completion of three weeks of all day and many nights of filming for a documentary on Morgellons Disease soon to air in Japan. The award winning film crew made their way to the U.S. from Tokyo first in mid October spending three weeks interviewing Morgellons patients, clinicians and scientists as potential candidates for roles in the documentary. This initial trip also served as a location hunt for the actual filming to take place. Months of preparation on the complex and controversial topic of Morgellons preceded the actual visits. The Japanese film crew has taken a far more in-depth look at Morgellons than any other media team to date and we anxiously anticipate an incredible documentary as the result. This crew is highly honored having received an award for best documentary at the New York Film Festival in 2005. The creativity, sensitivity and compassion exhibited by this team has far surpassed any U.S. film crew who has dared approach this unusually controversial medical topic.
Learn more about Morgellons Disease Documentary.
Important Lessons Learned
By Gregory V. Smith, MD, FAAP
This is a story about some profound lessons I learned while in medical school.
I graduated from the Medical College of Georgia in 1974, trained in pediatrics, and then practiced general pediatrics for 28 years. This situation occurred in June of my junior year of medical school—our first clinical rotation. My group had psychiatry that first month.
About a week or so into that rotation, we were notified about an admission from the outpatient clinic. It seems patient X was a middle aged white female well known to the psychiatry staff. Such patients are often referred to as "frequent flyers."
Ms. X had, what today, is called an anxiety/panic disorder. When she became anxious or any emotional situation arose, Ms. X would get progressively worsening shortness of breath. This often progressed into a full blown panic attack with Ms. X reporting she could not breathe and she was dying! She would become extremely agitated and was often verbally abusive to the staff. She had been admitted to the psychiatric ward at least 30 times and had been on multiple medications...
An Analysis of “Filament Formation Associated with Spirochetal Infection: A Comparative Approach to Morgellons Disease” and Why this New Study is So Very Important
Elizabeth Rasmussen, Ph.D., describes that findings of the recent study about Morgellons Disease (MD), "Filament Formation Associated with Spirochetal Infection: A Comparative Approach to Morgellons Disease," by Middelveen and Stricker (2011) are in direct opposition to the historical and traditional approach to the illness.
MD has been presumed to be a psychiatric disorder called “Delusions of Parasitosis” by dermatologists. Instead, Marianne Middelveen, a veterinary microbiologist, and Dr. Ray Stricker have found evidence of an a veterinary analog to MD in a disease of economic importance called bovine digital dermatitis (BDD). The bovine disease is characterized by presence of abnormal keratin fibers in the area of the hooves and causes lameness, loss of milk production and loss of weight in cattle, and has been researched since the 1970s. BDD has been found associated with spirochetes, spiral shaped bacteria organisms of a similar type to those that cause Lyme Disease and syphilis.
Although the etiology of MD is not yet known, the findings by Mideelveen and Stricker provide evidence to support a potential physiological and perhaps infectious etiology and a new direction for further research of MD. Dermatology has assumed a psychiatric etiology for the multisystemic illness without evidence to support that assumption. Dr. Rasmussen presents a critique of the traditional approach by dermatology and others throughout the past century and why the new study is so important. The emerging illness that now is reported in many countries around the world, seems to parallel the emerging bovine illness in many ways. A major contrast between the two diseases seems to be in amount of resources applied to researching a bovine disease of economic importance, versus a human illness that has been virtually ignored by researchers as thousands more report symptoms of MD...
Medical Education Update
The CEHF wishes to congratulate Dr. Peter Mayne, Dermatologist of Laurieton Australia for his presentation on Morgellons Disease at the University of Cardiff's recent Dermatology Conference in Australia. His presentation was very well received by his peers in the field of Dermatology. We applaud Dr. Mayne for looking closely at the evidence of Morgellons and for his willingness to speak out publicly dispelling the misdiagnoses of Delusional Parasitosis. Dr. Mayne's insightful presentation marks a giant step forward in the process of re-examining the evidence presented with Morgellons Disease. Ultimately, the goal is to look more closely at the evidence of Morgellons Disease and to eventually eliminate the unscientific psycho-cutaneous folklore which plagues thousands of Morgellons patients all over the world who now suffer the consequences of having been labeled with wrongful psychiatric diagnoses by Dermatologists. Visit www.drmayne.com for more information.
Read more updates
Congratulations to Marianne Middelveen and Dr. Stricker on the recent Medical Journal Publication! Keep up the great research on the Morgellons Disease comparison to Bovine Digital Dermatitis as we find the comparison "udderly" fascinating!
Journal of Clinical, Cosmetic and Investigative Dermatology - 11/14/2011
Marianne J. Middelveen, MSc / Raphael B. Stricker,MD
"Filament Formation Associated with Spirochetal Infection: A Comparative Approach to Morgellons Disease"
To read the full article, you can download it here.
DO NOT MISS THE COMMENTARY ON THIS ARTICLE IN THIS NEWSLETTER!
Authored by: Elizabeth Rasmussen, Ph.D., CEHF Scientific Advisory Board
The CEHF is collecting biopsy pathology reports on Morgellons patients for a research project. If you have ever had a tissue biopsy, even if the biopsy was done before you developed symptoms of Morgellons, please contribute the report to the CEHF as we have a researcher interested in doing some comparison studies. It doesn't matter at all what the results of the biopsy show and the report(s) can be submitted anonymously if you prefer. Just cover the name and medical record number as well as any other identifying information. Or you can send it 'as is' and we assure that your personal information will be kept anonymous. Either way is just fine.
You can submit the biopsy report using the following options:
1. Scan and Email it to: firstname.lastname@example.org
2. Fax it to: 1-903-639-2461
3. Snail Mail to:
The Charles E. Holman Foundation
P.O. Box 1109
Lone Star, Texas 75668
4. Bring it with you when you join us for Morgellons Conference!
Thank you for helping us win the war against Morgellons (and DOP)!
"Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence."
- John Adams