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,
public awareness and patient advocacy.
Our newsletter will be distributed to those who have expressed interest in Morgellons Disease.
Don’t Miss the Big Event!
The 7th Annual Medical – Scientific Conference on Morgellons Disease is almost upon us! Take advantage of the current event pricing before the late registration pricing kicks in.
Please accept our sincerest gratitude for your show of support during our Morgellons Untangled fundraising campaign on IndieGoGo.
We raised $7720.00 between Dec. 17,
2013 and Feb. 15,
After fees from Indiegogo &
we had a net of $6890.10,
which is a huge success for our Phase 2 Research Initiative.
We also received several direct donations to The Charles E. Holman Foundation for this event.
The CEHF would like to give a special thanks to Dr. Ginger Savely and her husband,
Rob Hutchins for their generous donation of $5,
All combined contributions helped us reach our needed goal of covering Phase 2 Research Initiative expenses.
The campaign success exceeded our expectations. This was the largest single undertaking for The CEHF to date and a great victory for everyone who’s affected or touched by MD. As our way of honoring donors, everyone who contributed to Morgellons Untangled will receive recognition in the CEHF event booklet for the 7th Annual Medical-Scientific Conference on Morgellons Disease, March 29-30, 2014 in Austin, TX.
It has been such an inspiration to see all of the contributions and encouraging words of support during our Morgellons Untangled campaign. It gives hope to the thousands of Morgellons patients worldwide!
this joint effort has helped further develop the dream of a world without Morgellons;
that generations to come will not have to endure rejection from the medical community as we have.
Thank you so much for your support of this research initiative and for your confidence in The CEHF. God bless you!
Welcome to new Medical Advisory Board Member,
Harold A. Smith,
We wish to send a warm welcome to our new volunteer!
We are so excited to have Dr. Smith join our organization. His skills and abilities 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 so very much!
Dr. Smith graduated from Duke University medical school. He went on to become Board certified in Emergency Medicine.
an ILADS member,
was one of the first doctors to complete the ILADS physicians training program.
Dr. Smith is in private practice in Bloomsburg,
Harry Quinn Schone Writes Compelling Paper on Morgellons
Harry Quinn Schone is a post-grad student at University College London,
UK. His area of study is the History and Philosophy of Science,
targeting on the history of disease.
Mr. Schone’s interest in Morgellons developed after researching ‘contested’ diseases.
It seemed that in the case of Morgellons,
instead of happening a few decades ago (as with AIDs, CFS, ADHD etc.) the struggle for MD validation was an on-going,
contemporary phenomenon. “I also felt that not much work had been attempted from a social sciences point of view, and will be happy if I was able to add a slightly different perspective from the existing literature.”
Paramount for him was the desire to resist writing a divisive piece which sought to make value judgments about anyone in this situation. Mr. Schone tried to use as wide a range of sources as possible and treat them equally.
His hope was,
more than anything,
that people reading his article would view it as an incomplete piece – an invitation to further contemplation,
discussion and research.
A new article on Lyme and autism will be published soon with Mason Kuhn as the primary author.
An interview will be coming out in Lyme Connections,
the newsletter of the Ridgefield Lyme Disease Task Force.
In an effort to provide proper care for those suffering with Morgellons and Tick Borne Diseases,
the Australian Chronic Infectious Disease Society (ACIDS) was established in late 2013. Dr Peter Mayne,
a member of The CEHF Medical Advisory Board,
has worked tirelessly this past year to help establish ACIDS in the land own-under. Much like in those the USA and elsewhere,
many Australians suffering with such conditions are caught in the gray area of politics between the Infectious Disease practitioners and the LLMDs. The ACIDS group of devoted and determined medical practitioners are bringing together education and legislation in an attempt to enlighten the under-informed and open doors for improved patient treatment. Read More Here >
MD in San Francisco,
CA and Marianne Middelveen,
Veterinary Microbiologist in Calgary,
The current research focus from this amazing team of scientists is on gaining comprehensive insight into the pathogenesis of Morgellons Disease. This is being pursued with advanced DNA sampling,
and staining of specimens from different patients. They have increased the number of patients included and are using multiple laboratories for a comparison of data results.
University of New Haven in West Haven,
Dr. Sapi and her motivated team of graduate students are well underway with their Phase 2 Morgellons Research Study. Borrelia and H pylori are being looked at in great depth to determine any relationship as well as how these pathogens are involved in Morgellons Disease – segments of this work are in collaboration with the team of Middelveen/Stricker. They are continuing to be on alert for any new ‘unknowns’ or surprises that may be uncovered in the DNA sequencing processing.
Ginger Savely Recipient of 2014 American Association of Nurse Practitioners (AANP) State Award for Excellence for Washington,
DNP has been selected to receive the 2014 AANP State Award for Nurse Practitioner Excellence for Washington DC. The AANP State Award for Excellence recognizes an NP in each state who demonstrates excellence in clinical practice.
In 2004 when practicing in Texas,
She was also honored with the Texas Nurse Practitioner of the Year Award.
The 2014 awards presentation will be made at the AANP National Conference in June.
Dr. Savely actively treats Morgellons patients and others suffering from tick borne diseases in her Washington DC practice.
She volunteers as part of the CEHF Medical Advisory Board and vigorously advocates for Morgellons disease patients.
Dr. Savely has numerous publications about MD.
Many of her papers are on PubMed and serve as the backbone for recognition of Morgellons Disease as having a true,
Dr. Savely speaks at the CEHF annual conference in Austin,
In April of year she is scheduled to do a Morgellons presentation at the 2014 Annual European ILADS Lyme Disease Conference in Augsburg,
The Charles E Holman Foundations wishes to congratulate Ginger Savely on being the recipient of this prestigious honor!
Randy S. Wymore,
OSU-CSH-Center for the Investigation of Morgellons Disease in Tulsa,
The last few months have been particularly busy times at the Oklahoma State University Center for Health Sciences. We have rolled out a completely new medical school curriculum for the current first year medical students. The Morgellons research has been ongoing in spite of working around the new curriculum and many of us are teaching two completely different curricula at the same time.
My former research associate is now a graduate student and has been continuing her research into Morgellons Disease. My undergraduate researcher is now a student at the main Stillwater campus,
but still managing to get in 10-20 hours of research a week.
By the time that the next Charles E. Holman Research Conference is convened we hope to have results from a variety of molecular research,
including data analysis from runs of NextGen DNA sequencing,
as well as specific analyses related to identifying microbial organisms associated with Morgellons.
Any results that could lead to actionable treatment strategies will be released for rapid communication through the Charles E. Holman Foundation prior to publication in a peer reviewed journal.
One of the more exciting developments that has not previously been discussed is a several months-long,
ongoing dialogue with a regional health insurance provider.
a physician representative contacted me to discuss Morgellons Disease as it pertains to a psychiatric diagnosis. The conversation has continued through to an Associate Operations Officer,
who is now in talks with their board officers about their categorization of Morgellons Disease. This particular health insurance
provider is considering a reassignment of Morgellons Disease patients from a purely psychiatric diagnosis to either a systemic condition of uncertain etiology or a primarily dermatologic condition. While neither is an ideal characterization of Morgellons,
to have a health insurance provider officially re-label Morgellons Disease away from a psychiatric label would be a major step in gaining credibility to those suffering with Morgellons.
I am cautiously optimistic that this provider will continue the dialogue with myself and a couple of physicians who have patients with Morgellons.
This is an example of how powerful a “grass roots” effort can be,
as the physicians lobbying with the insurance company on behalf of their patients started this entire process that led to preliminary questions being asked.
All it will take is one company changing the diagnostic coding of Morgellons to get media attention and then pressure can be put on other providers.
If and when these changes occur,
it will not only allow the patient to not be labeled as delusional,
but it opens up the possibility of more cost effective treatment of the patient. Many plans do not treat psychiatric conditions in as open-ended a manner as physical diseases and disorders,
so moving away from a psychiatric diagnosis will be a positive step.