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Keeping You in the Loop

September Newsletter 2012

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 to those who have expressed interest in Morgellons Disease. 

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In This Edition

6th Annual Conference on Morgellons Disease

Join us in Austin, TX on April 6th and 7th, 2013 for the 6th Annual Medical-Scientific Conference on Morgellons Disease.

Can you believe that it has been six years we have been having our conference?  Yes, we realize that many of us have been dealing with Morgellons for a lot longer than 6 years.  However, getting organized and recognized as a respected authority takes time.  These past 6 years has passed very quickly with a tremendous amount of heart and soul being put forth by numerous dedicated volunteers for Morgellons patients.  At long last, it seems that these efforts are bearing fruit!  Check out the latest on Research Updates.   Also, please check back on our web site for details regarding the Austin Conference as they become available. 

For those interested in presenting, abstract submission deadline is January, 10, 2013.   Abstracts can be submitted by email to info@theCEHF.org

 

2012 Conference DVDs Now Available!

The official DVD of the conference is the next best thing to being there! Proceeds received from the DVDs are a critical revenue source which allows us to continue our research efforts.

Suggested Donation Price: $40 Order Now!

Those who bought the DVDs and /or attended the conference provided great feedback:

“Dr. Carsten Nicolaus gave a very interesting presentation on his integrative approach to Morgellons treatment.  Much of his talk focused on holistic methods of treatment and it helped me realize there are many paths to treating this disease. “  - D.S.

“A major stride is the addition of GP Dermatologist Peter Mayne. Dr. Mayne gave two presentations and they were both very informative. I think we have long needed a dermatologist to point out the pathology in the skin structure. He is a wonderful speaker, interesting, and funny. “ - M.L.

“I thought our addition of new speakers this year was incredible. Marianne Middelveen gave a wonderful presentation on her own research into Morgellons. She spoke about some of the data which was in press at that time. I thought she did a fabulous job in presenting her data with clarity and professionalism. She is meticulous with her research. We are on a roll—at last.”  - J.S.

 

Volunteers Bring Possibilities and Enthusiasm to The CEHF

New CEHF Members

We wish to send a warm welcome to our new volunteers!  We are so excited to have each and every one of you contribute your time and abilities.  Your efforts will help promote the goals and objectives of The CEHF.  As our foundation grows, our joint efforts will help bring Morgellons Disease the recognition and visibility that it deserves.  Together we are stronger, working towards our common goals and making things happen.   Thank you all so very much!

New Medical Advisory Panel Members:

Edward Kilbane, MD
Stanford University
Department of Psychiatry

Learn More about Dr. Edward Kilbane.

Robert Bransfield, MD, DLPAPA
New Jersey

Learn more about Dr. Robert Bransfield.

New Nursing Advisory Panel Member:p>

Lisa Wallace, RN, PHN
Northern California

Learn more about Lisa Wallace.

 

Research Updates

Read about our most recent research updates here.

 

Marianne Middelveen to speak at 13th Annual IlADS Conference

Marianne Middelveen is slotted to speak at The 13th Annual International Lyme and Associated Diseases Society (ILADS) Conference on November 2-4, 2012 at the Westin on the Boston Waterfront Hotel.  Her presentation will be on the current status of her work on Morgellons Disease.

To learn more about the International Lyme and Associated Diseases Society (ILADS), visit www.ilads.org.

 

ILADS Attracts Hundreds of Physicians

Cindy Casey-Holman, RN Dir. of The Charles E. Holman Foundation Gives a presentation on Morgellons Disease at the 2011 ILADS Conference in Toronto, Canada, Oct. 28-30.

Toronto Conference examines diverse Lyme related topics. 

Morgellons patients often become agitated an unruly at their dermatology appointments, said Cindy Casey, RN, Director of The Charles E. Holman Foundation, who presented the work of her colleague Ginger Savely, DNP on this controversial disease.  Casey told The Lyme Times that the reason may have something to do with the tendency of dermatologists to label such patients as "delusional".

Many of the doctors who attended Casey's lecture already had several Morgellons patients in their practices.  They were interested in learning more about the complex and distinct manifestations of the disease.

"Many of them had actually examined their patients' skin using 100X magnification light dermatoscope, unlike dermatology specialists whose reliance upon ancient medical folklore has prohibited a skin examination with lighted microscopy for fear of feeding into their patient's 'delusion' and prolonging their office visit", Casey said.  She added that many dermatologists employ the "match box sign" which she termed "ridiculous."

Casey is hopeful that the medical professionals who listen to their patients and look at the evidence instead of catering to insurance companies and stakeholders with no medical experience will lead to better treatments for people with Morgellons.

(Reprinted from Lyme Times * Volume 24 * Number 1* 2012 with permission.)

 

PublicHealthAlert.org: MEDICAL PERSPECTIVES

By Harriet L. Bishop, President of Texas Lyme Disease Association

It may be that Morgellons patients are the jolliest of all who have chronic diseases!

How could that be, considering the fact that most patients will tell you Morgellons symptoms have caused them more misery than the often co-existing Lyme disease ever did?   Perhaps the answer lies in the fact that their mysterious debilitating illness is at last being seriously investigated in the USA, Canada, Germany, Australia and Japan after years of derision among skeptics within the medical profession. Continue reading.  

(Reprinted with Permission from Public Health Alert; PHA, Vol.7, Issue 6 June 2012.)

Visit our Flickr page to view more photos of the 5th Annual Morgellons Conference and reception. Check it out … you may find yourself being caught in the act! Anybody who has pictures of the conference and would like to share, please send to info@thecehf.org with “Conference Photos” in the subject line.  We will add them to our collection for others to enjoy.  

A real treat for the Sunday afternoon session was the viewing of the Japanese Morgellons Disease documentary.  This has only been aired in Japan.  Such documentary DVDs are not usually made available to the public by the FUJI-TV network. 

Our sincere gratitude and “Thanks” are extended to all who participated in this project.  Randy Farrell, Gayla Conner, and Cindy Casey, the patients who bared their souls and skin allowing the film crew to step into the privacy of their lives both day and night to make this documentary.


We are grateful to the clinicians and scientists for their participation and contributions of time and expertise to this project including Rhonda Casey, D.O.; Marianne Middelveen, Microbiologist; Ginger Savely, DNP; Raphael Stricker, MD; Amelia Withington, MD and Randy S. Wymore, Ph.D.