CDC mystery disease study heads toward finish lineMorgellons sufferers and sympathizers protest at the CDC in November 2007. Courtesy of Kelly PickensBy Spencer Freeman
Nearing the end of the Morgellons study
The Atlanta-based Centers for Disease Control and Prevention, partnering with Kaiser Permanente’s Northern California Division of Research, will complete the second phase of its study of the mysterious, and some say nonexistent, Morgellons disease later this month.
The CDC launched the study in January, after Congress received thousands of letters from people claiming to suffer from the disease, characterized by skin lesions, rashes and unexplained fibers found in various parts of the body.
The first stage consisted of identifying all Kaiser Permanente members who may have gone to a physician with symptoms suggestive of Morgellons at any point during the 18 months between July 1, 2006 and Dec. 31, 2007. Researchers then determined whether they met eligibility criteria for the study. In stage two, all eligible members were invited to complete a comprehensive Web-based or telephone survey that examined the duration and severity of a variety of symptoms, reported exposures, other possible precipitating factors and any treatments that may have been found to help.
According to CDC Spokesman David Daigle, in the third, and final, phase of the investigation, those with active symptoms will be invited to come to the Division of Research for an extensive clinical examination, including collection of skin biopsies, blood and urine samples.
Researchers hope that the investigation will help doctors learn more about Morgellons, such as who may be affected, the symptoms associated with the disease, and the factors that might have contributed to it. Results of the study will be released by early 2009.
Also, later this month, a new show on CBS called “The Doctors” is slated to film a two-part segment on Morgellons disease. The show is expected to air in September.
All of this would seem to be good news for Morgellons sufferers. However, even among those, there are some who are distrustful of the CDC’s study and not optimistic about media coverage.
“I do not count on the CDC, which is one of the reasons why I am working so hard to bring awareness myself,” says Laura Galvez, a victim of Morgellons. Galvez took it upon herself to put together a packet containing information about Morgellons that Randy Wymore, a researcher at Oklahoma State University, has been compiling for the past five years, and present it to senators and congressmen representing her home state of Utah.
Galvez, 50, has suffered from Morgellons for more than five years. She says the disease forced her to quit her job and exhaust her Social Security benefits. Before contracting Morgellons, Galvez says she was always fit and active.
“Now I just look like a skinny little old lady,” she says.
According to information on its Web site, the CDC “has received an increased number of inquiries regarding an unexplained skin condition which some refer to as ‘Morgellons.’ Persons who suffer from this unexplained skin condition report a range of cutaneous (skin) symptoms including crawling, biting and stinging sensations; granules, threads, fibers, or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores). In addition to skin manifestations, some sufferers also report fatigue, mental confusion, short term memory loss, joint pain, and changes in vision.”
The CDC does not consider Morgellons a reportable disease, and refers to it as “unexplained dermopathy.” Despite that, the Morgellons Research Foundation fully supports the efforts by the CDC and Kaiser Permanente.
“We have been asking for it and are pleased [research] has finally begun,” says Doug Buckner, associate director of the MRF. Buckner hopes that the CDC study will open the door for people with Morgellons to receive proper medial treatment.
The MRF plans to continue financially assisting ongoing efforts by private researchers already dedicated to finding out more about Morgellons disease.
While there is currently no cure for Morgellons, possible treatments abound. Some Morgellons sufferers, like Wisconsin resident Judith Knilans, have found that using light therapy helps soothe symptoms, even if only temporarily. Knilans, who has had Morgellons for more than 10 years, says it was her doctor, who was running a clinical trial that treated herpes by using lights and dye, who suggested she try light therapy. At that time, he thought her condition was a mutation of herpes, chicken pox and shingles, all of which are members of the same viral family. Knilans says she had excellent results, but her improvement seemed to stall after a month. She began experimenting with different lights and oils, and found a process that worked even better than the treatment her doctor had used.
Karen Wells, a registered nurse in Indiana, has suffered from Morgellons since 2005 and, she says, lost a friend to the disease in 2004.
“Everything is so uncertain, but is does kill,” she insists. “I have seen [Morgellons disease] kill not just my friend, but in the hospital where I work.”
Wells, who works in a neurology unit, says that she sees Morgellons lesions on patients who don’t know they have it. The lesions are sometimes accompanied by cognitive symptoms such as anxiety attacks, panic and nightmares, she says.
“I hate waking up and pulling the covers off me and checking my skin every day to see what new horror is possibly there,” Wells says.
Until recently, attempts to find information about Morgellons on the Web would result in referrals to pages that discussed “delusional parasitosis”—a mental health condition characterized by the belief that one has parasites or bugs crawling on one’s skin.
“My mother passed away thinking I was crazy,” says Wells. “My father won’t talk to me because he feels that my mother could have lived the last days of her life without having to worry about me and this ‘crazy’ disease.”
A few weeks ago, the syndicated “Dr. Phil” program aired an episode spotlighting Morgellons. Knilans was a guest on the show, but the reaction of the Morgellons community was a collective shrug.
“I can almost predict the outcome, especially if this is an older show,” posted one user on the Web site www.morgellons-disease-research.com. “They will look at all of the previously published research in a very logical and methodical way and perhaps mention the CDC study and say ‘We will just have to wait and see what their conclusions are before we decide.’”
According to Knilans, all of the lab tests and biopsies performed on her came back normal, causing doctors to claim that it was all in her head.
“This is a story you will hear again and again for those with this disease,” Knilans writes in an e-mail to The Sunday Paper. “We have to bring awareness that this is real—and it is spreading. We have a huge problem and it is being ignored.”
Buckner agrees: “A doctor told me that if it is not in the medical books or journals, then it does not exist, and that he could not treat what does not exist.”
Original article posted here.