Cindy Casey, RN, is director of the Charles F. Holman Foundation, an organization dedicated to the study of Morgellons disease. Morgellons is a mysterious condition that apparently causes bizarre and painful skin manifestations, including what seem to be fibers coming from the skin. Some, though not all, Morgellons patients also have Lyme disease. LymeDisease.org asked her to comment on recent conclusions by the Centers for Disease Control that Morgellons patients are delusional.

Comments from Cindy Casey, RN:

Below are a few points from my perspective as director of a leading Morgellons organization, to be considered regarding the CDC study:

First and foremost, I want to thank the CDC for making a very preliminary effort to investigate this emerging infectious disease that should be of great concern to everybody worldwide.

The study is flawed from the very beginning in the method of patient selections.  Only one of these patients was familiar to me and was known to have the symptoms and manifestations we identify as Morgellons Disease.   Sadly, that patient is now deceased.  The CDC was strongly resistant to any dialogue with those of us who offered to provide information on what we describe as manifestations of Morgellons Disease.

The CDC did not employ use of lighted microscopy to identify the fibers found in primary lesions and found beneath otherwise un-flawed or un-broken skin. These fibers are not identifiable as environmental contaminants and recent studies have shown the fibers are actually stemming from our own basal layer of epithelial cells.

The study is lacking in description of the methods used to identify the composition of the fibers found present in open lesions.  The study is suggestive that the wounds were contaminated with external debris and the term cellulose and evidence of dye were used.  Without identifying the methods by which these determinations were made or once again how this patient population was selected, this information is useless.  Unfortunately, the entire study is useless as far as providing any further insight into the condition that is debilitating and torturous for thousands of individuals world wide. It does prove to us that the CDC was not at all familiar with the unique manifestations of Morgellons which we have tried to bring to their attention.

The CDC describes purulent drainage and  associated with the lesions which were investigated in the study.  I have seen thousands of Morgellons lesions and one remarkable finding is that Morgellons lesions are never purulent and rarely ever is a Morgellons patient found to have any signs of infection within or surrounding the lesion.  It appears that the patients selected by the CDC for this study were not patients who exhibited the characteristic symptoms that we know to be consistent with Morgellons.

It is unfortunate for all that valuable resources were used rather recklessly and no advancement was made in the understanding of this unique pathological condition. In the absence of and resistance to any dialogue or collaboration, the CDC has unfortunately chosen the wrong patient population to study. Thus the results lend no further insight into this mysterious condition.

DOP and neurotic excoriations are conditions that could easily be mistaken for Morgellons, especially if the investigators are unfamiliar with what we have found to be consistent with Morgellons.

Science is a moving target, and as new scientific information emerges the views of scientists will shift. We are at the very beginning of the Morgellons saga in terms of scientific investigation, and people need to keep an open mind about a disease that is disfiguring, disabling, poorly understood and very frightening. As more physicians and researchers are becoming actively involved with the condition WE identify as Morgellons, science will be forthcoming and a better understanding of the etiology will be determined.

The Charles E. Holman Foundation will be holding our annual conference in Austin, TX on March 24th and 25th of 2012.  A lot of new information will be presented by Morgellons researchers.  This year we have some interesting new speakers.  Dermatologist Peter Mayne will discuss a structured dermatological approach to Morgellons Disease. Microbiologist Marianne Middelveen will discuss her findings from examining the evidence under light microscopy.  The conference is geared primarily toward medical professionals but everyone is invited to attend. For more information on our upcoming conference, please visit our website.

Read news reports about the CDC study here and here.