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Morgellons

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Morgellons (also called Morgellons syndrome) is a name given by biologist Mary Leitao to a mysterious condition characterized by a range of cutaneous (skin) symptoms, including crawling, biting, and stinging sensations; granules, threads, 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. There is controversy regarding the nature of this condition. Dermatologists largely regard Morgellons as being a manifestation of delusional parasitosis. This is contested by the Morgellons Research Foundation (MRF), an advocacy group that insists it is a physical, infectious disease. Morgellons has received coverage in the media, after it was first brought to public attention by the MRF in 2004.

Neither the "International Statistical Classification of Diseases and Related Health Problems" (ICD) nor the Merck Manual list the condition in any manner.

On August 1, 2007, the Centers for Disease Control and Prevention (CDC) issued a formal Request for Quotations for an epidemiologic investigation.

Background

In 2002, biologist Mary Leitao's 2-year-old son developed sores under his lip and began to complain of "bugs". Leitao examined the sores and discovered "bundles of fibers" of various colors. She took her son to see at least eight different doctors, who were unable to find any disease, allergy, or other explanation for the symptoms. In 2004, Leitao created a web site devoted to what she now believes is a new disease, which she called Morgellons after an obscure condition described in 1674, The MRF has since received reports of Morgellons from all 50 US states and 15 nations, including Canada, the UK, Australia, and the Netherlands. California, representing 12% of the US population, accounted for 24% of registrations within the United States.

The MRF considers Morgellons a newly emerging infectious disease and not related to the earlier condition. Morgellons is not a widely recognized medical diagnosis, and sources other than the MRF consider Morgellons to be a variety of different known ailments:

On May 22, 2006 KCBS News in Los Angeles, CA aired a video about Morgellons titled: Mysterious Disease Plagues More Southlanders. The same day the Los Angeles County Department of Health services issued a statement: "No credible medical or public health association has verified the existence or diagnosis of "Morgellons Disease." The current description of the disease is vague and covers many conditions. Until there is a credible, national standard for the diagnosis of this condition, there is no basis for making it a reportable disease." They go on to say individuals should get clinical and laboratory evaluation of serious skin irritations, but not panic over unverified reports about Morgellons.

In August , 2006, Nature Medicine correspondent Emma Marris, wrote in the journal:

Most dermatologists deny the disease exists, saying the people who claim to suffer from it have either common skin illnesses or psychological disorders such as delusional parasitosis, in which people become irrationally convinced that they harbor parasites. Stephen Stone, president of the American Academy of Dermatology, has stated: "There really is no scientific basis at this point to believe that this is real." Many patients with symptoms similar to Morgellons respond well to antipsychotics, Stone says. But "admittedly, there are some that did not. I guess you have to keep an open mind to the possibility that something is going on."

The Mayo Clinic's website states:

Some health professionals believe that Morgellons is a specific condition likely to be confirmed by future research. Others believe that signs and symptoms of Morgellons are caused by another condition, often mental illness. Other health professionals do not acknowledge Morgellons as a disease or are reserving judgment until more is known about the condition.

CDC investigation

On August 1, 2007, the CDC issued a formal Request for Quotations for an epidemiologic investigation of Morgellons. The CDC RFQ document includes the following introductory summary:

Morgellons is an unexplained and debilitating condition that has emerged as a public health concern. Recently, the CDC has received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media regarding this condition. Persons who suffer from this condition report a range of coetaneous symptoms including crawling, biting and stinging sensations; granules, threads or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores) and some sufferers also report systemic manifestations such as fatigue, mental confusion, short term memory loss, joint pain, and changes in vision. Moreover, some who suffer from this condition appear to have substantial morbidity and social dysfunction, which can include decreased work productivity or job loss, total disability, familial estrangement, divorce, loss of child custody, home abandonment, and suicidal ideation.

As of February 2007, approximately 10,000 families had registered with the Morgellon’s Research Foundation (MRF) and felt they or a family member met criteria for Morgellons as defined by the MRF. Of the U.S. families in the MRF registry, 24% reside in California with geographic clustering in the San Francisco metropolitan area.

The etiology of this condition is unknown, and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors. An epidemiologic investigation is needed to better characterize the clinical and epidemiologic features of this condition; to generate hypotheses about factors that may cause or contribute to sufferers’ symptoms; and to estimate the prevalence of the condition in the population; and to provide information to guide public health recommendations. A contractor is needed who can provide timely services to assist the CDC in the investigation of this emerging public health problem.

Earlier, prior to June of 2005, "Sens. Dianne Feinstein and Dick Durbin contacted the Centers for Disease Control and Prevention (CDC), asking whether the organization had investigated the illness. The answer was no. "Our laboratories are available," said CDC spokeswoman Jennifer Morcone. "But we need a clinically appropriate sample." So far, she said, they've only received samples sent in by patients." This statement is at odds with a 2006 report in Time Magazine from Greg Smith, a physician with Morgellons, and former Medical Director of the MRF, who attempted to send samples from his own body to the CDC, but stated that the agency "blew it off." The MRF also attempted to share the findings of their OSU research team with the CDC, but the CDC said "it would conduct its own research first, then vet the findings with outside scientists".

A CDC task force first met in June 2006 in order to develop a case definition of Morgellons. As of August, the task force consisted of 12 people, including two pathologists, a toxicologist, an ethicist, a mental health expert and specialists in infectious, parasitic, environmental and chronic diseases. In July of 2006, Dan Rutz, MPH, a communications specialist for the CDC, said "We're not ready to concede there's a new disease, but the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it because they're frustrated that there's been no organized way to deal with their suffering." In May, 2007, KGW-TV Newschannel 8's Laural Porter asked Rutz "Do you have any idea what the fibers are?" Rutz said, "None. We don't know. We haven't studied them in a lab yet. There is nothing to imply there is , but our mind is open to everything, including that remote possibility." Questioned about when a preliminary report might be ready he answered, "I am not going to be pinned down. It's too hard to predict how science will unfold. I can tell you that we are making progress in getting ready to get into the field to do this work." Then in June 2007, the "CDC is working with public health and other medical professionals to identify potential sites for the epidemiologic investigation. CDC also is working with task force members to develop a scientific protocol, including an initial screening case definition for the epidemiologic investigation." In July 2007, the CDC announced it's "Division of Parasitic Diseases is seeking to award a sole source commercial contract for investigation in California of an unexplained dermopathy (Skin Condition) which some refer to as Morgellons. The Government has determined that Kaiser Permanente (KP), Northern California is the only responsible source to meet the Government's needs".

Proposed causes

Delusional parasitosis

A majority of dermatologists view Morgellons as a new name for an old condition, Delusional parasitosis. In delusional parasitosis, patients hold a delusional belief that they are infested with parasites. They may experience formication, the sensation that insects are crawling under the skin. Individuals suffering from this condition may develop elaborate rituals of inspection and cleansing to locate and remove parasites and fibers, resulting in a form of self-mutilation; they injure themselves in attempts to be rid of the "parasites" by picking at the skin, causing lesions, and then pick at the lesions, preventing them from healing. Patients with delusion parasitosis often present at the doctor's office with "matchbook sign," collections of fibers and other foreign objects supposedly retrieved from the skin. Dr. Noah Craft, a dermatologist at the Harbor-UCLA Medical Center, Torrance, CA, has seen a handful of Morgellons patients and biopsied their skin lesions, but found only normal skin and inflammation, as one would find in a bump that has been picked at.

Some cases of delusional parasitosis may have organic causes. For example, formication, the sensation that bugs are crawling under ones' skin, can be caused by allergies, diabetic neuropathy, menopause, skin cancer, or herpes zoster. Formication is also a common side-effect of many prescription drugs such as Ritalin, Adderall and Lunesta. The sensations are real, but the attribution of the sensations to unknown parasites and the collection of fibers is part of the delusion.

Advocates from the MRF counter that non-healing Morgellons lesions have been found on infants' bodies in locations that the infants can not themselves reach to scratch.. The symptoms of Morgellons are broader than those reported for delusional parasitosis, including chronic fatigue and muscle pain and cognitive disfunction. In a letter to the MRF dated June 11, 2003, the California Department of Health and Human Services stated that, "After reviewing your website to gain some information about the patients...the patients appear to have a constellation of symptoms that do not fit any currently definable disease, infectious or otherwise."

Other skin conditions

It has been hypothesized that some cases of (self-diagnosed) Morgellons disease are actually other recognized skin disorders, including allergic dermatitis, contact dermatitis, and the parasite scabies. In these cases, there is still a delusional component (the fixation on bugs crawling under the skin, the production and collection of fibers, and self-mutilation), there is also an organic component that can be treated by conventional means. However, no case studies on successful treatment of Morgellons as purely a skin disease have been reported.

Other theories and research

The majority of research into novel causes for Morgellons have been conducted by scientists associated with the Morgellons Research Foundation and is published on the MRF web site. To date, none of these studies has been published in the peer-reviewed medical literature or been reproduced by researchers not affiliated with the MRF.

Investigation of the fibers

Microscopic observations of fiber specimens taken from four Morgellons patients living in the San Francisco Bay Area, CA in Dec, 2004 showed that they were so similar to each other that the causative agent may be epidemiologically the same."

Randy Wymore, a former research director of the MRF and presently Director of the Oklahoma State University Center for Health Sciences' Center for the Investigation of Morgellons Disease, claims that Morgellons patients have masses of dark fibers visible at 60x magnification under the unbroken skin, while unaffected individuals do not. The fibers did not look like fibers from clothing, carpet, or sporting goods, but fibers from patients in 4 different states "look(ed) very similar to one another."

Dr. Rhonda Casey, chief of pediatrics at Oklahoma State University Hospital and part of the MRF research team at OSU, reported that she has examined many patients skin via a dermatoscope and performed biopsies on both lesions and apparently healthy skin, and that "she saw fibers embedded in both places. The white ones, she says, are hard to see. A dermatologist who either didn't look at all, or didn't use a dermatoscope, might not see them under the skin." Casey also noted that all of her Morgellons patients exhibited neurological impairment.

Dr. Citovsky, MRF board member from the State University of New York at Stony Brook reported in January, 2007 that Morgellons skin fibers appear to contain cellulose.He tested five skin samples of Morgellons patients, and found evidence of DNA from Agrobacterium, a potentially pathogenic species which is known to produce cellulose fibers at infection sites within host tissues.

Another MRF board member, Dr. Ahmed Kilani, the CEO of Clongen Labs and a microbiologist with a Ph.D. from Stanford University Medical School, does not agree that Morgellons is a bacterial infection. Based on the preliminary research that he has conducted so far, Kilani has hypothesized that Morgellons is not caused by a bacterium, but "is a more complex fungus, algae or a novel parasite. The fibers are most likely feeding structures as they have strong resemblance to aerial hyphae observed in many fungal species."

Bacterial hypothesis

Raphael Stricker, President of the International Lyme and Associated Diseases Society (ILADS) and a member of the MRF Medical Advisory Board, has written a review article on Morgellons for the American Journal of Clinical Dermatology. He reports that "Morgellons disease may be linked to an undefined infectious process. " He claims that "many patients with Morgellons disease have positive Western blots for Borrelia burgdorferi, the causative agent of Lyme disease," and that treatment with antibiotics appropriate for Lyme disease leads to remission of Morgellons symptoms. However, the underlying data for these claims has not been published, nor have these results been reproduced by other scientists.

Environmental toxins

Richard Fagerlund, an entomologist who has a column titled "Ask the Bugman" in the San Francisco Chronicle, stated that he takes this issue seriously. He receives letters from people with Morgellons symptoms daily. He believes that the condition is reaching epidemic proportions, and believes that only a small percentage of these cases are delusional parasitosis, while the rest may be the result of something else, such as pollutants, especially pesticides.

Treatment

Most psychiatrists and dermatologists treat Morgellons by treating any underlying dermatological condition as the condition dictates, and treating other symptoms with antipsychotic medications. See, Psychiatric Arsenal Has Weapons Against Morgellons Disease , OCD Patients May Seek Help From Dermatologists and Pimozide at Least as Safe and Perhaps More Effective Than Olanzapine for Treatment of Morgellons Disease,. Other doctors have suggested Cognitive Behavior Therapy, see Cure found for Morgellons disease? .

Doctors and nurses in the MRF treat Morgellons very similarly to the controversial late-stage infectious Lyme disease ( "Most Morgellons patients, if found positive for Chlamydophila pneumonia, a Babesia species or a Borrelia species pathogenic to humans...and given appropriate antibiotics long enough, resolve most symptoms.") , with long term intravenous antibiotics. . One of the authors of the two original papers on Morgellons has said the rife machine helps in 30% of cases.

There is also a significant amount of self-treatment, with many web retailers offering various treatments. , and various of these are mentioned on the NMO's (ex-MRF board members) site

See also

References

  1. Unexplained Dermopathy
  2. ^ Mysterious 'Morgellons disease' prompts US investigation, Emma Marris, Nature Medicine, 30 August 2006
  3. ^ Dunn, Jeffrey (August, 2007). "Diffuse Pruritic Lesions in a 37-Year-Old Man After Sleeping in an Abandoned Building". The American Journal of Psychiatry. 164: 1166–1172. doi:10.1176/appi.ajp.2007.07030381. Retrieved 2007-08-04. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
  4. ^ 2007-Q-09877,Morgellons CDC Request for Quotation DOC
  5. ^ DeVita-Raeburn, Elizabeth (March/April 2007). "The Morgellons Mystery". Psychology Today. Retrieved 2007-08-04. {{cite web}}: Check date values in: |date= (help)
  6. ^ Stobbe, Mike (2006-08-09). "CDC Probes Bizarre Morgellons Condition". CBS. Retrieved 2007-08-04. Cite error: The named reference "CDC Probes" was defined multiple times with different content (see the help page).
  7. Harlan, Chico (2006-07-23). "Mom fights for answers on what's wrong with her son". Pittsburgh Post-Gazette. Retrieved 2007-08-04.
  8. Cite error: The named reference ILADS was invoked but never defined (see the help page).
  9. "Worldwide reports of Morgellons disease". Morgellons Research Foundation. Retrieved 2007-08-04.
  10. "Maps of Morgellons Research Foundation registrants in the U.S." Morgellons Research Foundation. Retrieved 2007-08-04.
  11. Morgellons.org
  12. ^ "Morgellons disease: Managing a mysterious skin condition". Mayo Clinic. 2007-05-02. Retrieved 2007-08-04.
  13. May 22, 2006 KCBS News in Los Angeles video titled: Mysterious Disease Plagues More Southlanders
  14. LADHS Statement on Morgellons Disease, Los Angeles Department of Health Services, May 2006
  15. Cite error: The named reference pop was invoked but never defined (see the help page).
  16. ^ Itching for Answers to a Mystery Condition, TIME, July 28, 2006
  17. "CDC considers Texas for Morgellons study", My San Antonio News, posted Jun 26, 2006, accessed Jun 26, 2006.
  18. What the CDC has to say about Morgellons; May 10, 2007
  19. Unexplained Dermopathy (aka "Morgellons") Centers For Disease Control, June 12, 2007
  20. "Investigation of an Unexplained Dermopathy, California", accessdate=2007-07-29
  21. A Medical Mystery: Delusional parasitosis Frank X. Mullen Jr, Reno Gazette-Journal, May 8, 2004.
  22. Cite error: The named reference Harvey was invoked but never defined (see the help page).
  24. Jenny Haverty, Clinical Microbiologist Scientist, at Marin General Hospital, reported on the MRF web site
  25. "Morgellons Disease, Cofield family", WKRG-TV, Mobile, May 22, 2006
  26. Citovsky, V. CONTRIBUTION OF AGROBACTERIUM TO MORGELLONS DISEASE. Scientific abstract published on the MRF web site
  27. Kilani, A. Investigation of Novel Organism Implicated in Morgellons Disease. Research proposal published on the [http://www.morgellons.org/clogen1.htm MRF web site.
  28. International Lyme and Associated Diseases Society (ILADS)
  29. Cite error: The named reference Stricker was invoked but never defined (see the help page).
  30. Persistent scabies-like condition may not be all in people's heads, Richard Fagerlund, San Francisco Chronicle, December 30, 2006

External links