Posted Thursday, Jan. 26, 2012, at 5:51 PM
Joni Mitchell has said that she suffers from Morgellons disease.
Photo by Frederick M. Brown/Getty Images
For years, a small but vocal patient community has claimed that the medical establishment is ignoring its debilitating, horrifying-sounding disease. Morgellons, according to its sufferers, is characterized by tiny parasites living under the skin, which produce fiber-like substances that spring from lesions. While most doctors dismissed the disease as an outbreak of delusional parasitosis, Morgellons sufferers have insisted that it was insulting to be told that “it’s all in your head.” Many felt vindicated when the CDC decided to undertake a study of the ailment. Even when a 2011 Mayo Clinic study suggested that the disease is psychosomatic, the Morgellons community clung to hope that the CDC would vindicate them.
But now the CDC’s report is out, and Morgellons activists are horrified: The study, carried out in Northern California, found no environmental or infectious cause, nor evidence of real parasites. The fibers, which many Morgellons patients have insisted were of composed of a substance that was unidentifiable by any lab, were mostly just pieces of fabric and skin fragments from repeated scratching. (You can read the full study on the Public Library of Science.) In conclusion, the CDC writes on its “Unexplained Dermopathy” page,
This comprehensive study of an unexplained apparent dermopathy demonstrated no infectious cause and no evidence of an environmental link. There was no indication that it would be helpful to perform additional testing for infectious diseases as a potential cause. Future efforts should focus on helping patients reduce their symptoms through careful attention to treatment of co-existing medical, including psychiatric conditions, that might be contributing to their symptoms.
For many who believe that Morgellons has ruined their lives, this is a bitter pill, and they don’t want to swallow it. They want reassurance that this is real. Joni Mitchell, who says she suffers from Morgellons, told the Los Angeles Times in 2010, "In America, the Morgellons is always diagnosed as 'delusion of parasites,' and they send you to a psychiatrist. I'm actually trying to get out of the music business to battle for Morgellons sufferers to receive the credibility that's owed to them." Another sufferer told the San Francisco Chronicle yesterday, “We just want to be acknowledged. This is not a delusion."
But those two things aren’t mutually exclusive, and no one is saying that they aren’t suffering. I believe the researchers would be the first to say that Morgellons patients are experiencing very real symptoms that adversely affect their lives. Psychosomatic does not mean they are “faking it”; it just means there is no medical cause. Still, they will search on, and perhaps become an increasingly insular and paranoid community. Already, some point to chemtrails as causing their symptoms; others, nanomaterials. The doctor on Respectful Insolence writes, “Unfortunately, it's probable that no amount of evidence will convince such people, at least until we find treatments that are effective in alleviating their symptoms. Maybe not even then.”
The reluctance to accept the CDC study's results highlights the different ways society views medical conditions and psychological conditions. If we treated them equally, a psychosomatic diagnosis would not bother patients so much; but because of the stigma of mental illness, people are loath to accept such a diagnosis.
For a long time, Morgellons sufferers have claimed that their suffering has been brushed off because the majority of them are women. As one wrote to the Washington Post in 2008, “Women's concerns have been routinely dismissed. Anxiety about childbirth? ‘Women have been having babies for millenia.’ Morning sickness? ‘There's no such thing; it's all in your head.’ ” This is a fair point; women have, historically, been patted on the head at times. But now, rigorous research supports the idea that this is not one of those occasions.