#contested illness

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Paid Medical Gaslighting Survey! -UPDATE JULY 29: CLOSED!

For my PhD dissertation, I'm looking at how people WITH vs people WITHOUT chronic illnesses (such as POTS, endometriosis, fibromyalgia) are treated by healthcare providers. With this work, I hope to create a measurable scale for medical gaslighting so that it can be recognized and addressed.

UPDATE: THIS SURVEY IS NOW CLOSED! THANK YOU!

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Blueprint for Allyship: Health Update and How You Can Help (pw)ME

Hoping, praying, expecting, wishing, manifesting, longing for folks to pay attention to this post and read to the very end! Help! This is a call to action and a cry for solidarity. ME advocates cannot sustainably do this alone, so here’s a blueprint for allyship. See my previous posts if you think ME is “me” capitalized and I’m just screaming for attention. View this post on Instagram A post…

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Brian Fair, Morgellons: contested illness, diagnostic compromise and medicalisation, 32 Soc Health & Illness 597 (2010)

Abstract

The case of Morgellons illustrates how the emergence of a new medically contested illness intersected with and impacted on the diagnostic processes of an existing uncontested psychiatric condition, Delusional Parasitosis (DP). More specifically, the sociopolitical processes at play in the contested illness, Morgellons, dubiously reflect patient empowerment, as well the resilience and power of medical jurisdiction. This research offers insights into the contested illness and medicalisation literatures, and aims to bridge these two approaches towards the relationship between patient empowerment and medical authority, which I do through the notion of doctor-patient compromise. The data for this research come from a comprehensive qualitative analysis of Morgellons discourse through four key sources: the pro-Morgellons website Morgellons.org; the anti-Morgellons website Morgellonswatch.com; the popular media’s portrayal of Morgellons; and the DP and Morgellons articles published in peer-reviewed medical journals, as made available on PubMed.

Morgellons: from a personal trouble to a public issue

In the spring of 2001, Mary Leitao claims to have witnessed a fibre sprout out of her two-year-old son’s face, spontaneously emerging from a skin rash that she was treating with a medicinal ointment. Leitao brought her son to a medical facility, where a doctor diagnosed him with eczema and maintained that the fibre was some type of innocuous discharge (Harlan 2006). But when Leitao’s son developed more sores and emergent fibres, she took him to several other physicians, all of whom denied the severity of her son’s skin rash. Leitao terminated her search when the ‘last doctor she tried to consult … not only refused to see her, but … suggested it was a case of Munchausen’s by proxy’ (DeVita-Raeburn 2007: 96). Eight years later, the contested illness known as Morgellons can be traced back to these initial conflicts between Leitao and the medical community.

According to the Morgellons website (http://www.morgellons.org/), which Leitao created in 2002 in order to spread information about her son’s mysterious illness, Morgellons is characterised by open skin lesions and infections, protruding fluorescent fibres and a host of related neurological problems. Morgellons sufferers believe that their sores and itchiness (which many liken to the sensation of bugs crawling under the skin) are caused by an unknown infectious pathogen. However, the overwhelming majority of medical experts believe that Morgellons is simply a new name for the longstanding psychiatric condition Delusional Parasitosis (DP), whose symptoms virtually match Morgellons. In cases of DP, mentally ill patients believe that there are insects or bugs beneath their skin, which results in sufferers digging and picking at their bodies and their subsequent infections (Koo and Lee 2001). Therefore, when Morgellons patients come to dermatologists with lesions and the sensation of crawling skin triggered by bugs or emergent fibres, doctors routinely diagnose them with DP. As dermatologist Norman Levine states: ‘[Morgellons] is not a mysterious disease … If you polled 10,000 dermatologists, everyone would agree with me [that Morgellons is DP]’ (Monaghan 2006).

Despite its legitimacy being denied by nearly the entire medical community, Morgellons has generated an exceedingly high level of public inquiry and concern, ostensibly prompting the Centers for Disease Control and Prevention (CDC) to fund an approximately $500,000 multi-year Morgellons research project, which is currently being carried out by Kaiser Permanente in Northern California (http://www.cdc.gov/media/transcripts/2008/t080116.htm). As such, the central question of this article is: How did Morgellons evolve from a patch of clinically diagnosed eczema on one toddler’s skin into a nationwide contested illness that ultimately commanded the attention and research power of the CDC? The data for this research come from a comprehensive qualitative analysis of Morgellons discourse through four key sources: Leitao’s pro-Morgellons website, the anti-Morgellons website Morgellonswatch (http://morgellonswatch.com/), the popular media’s portrayal of Morgellons, as well as the DP and Morgellons articles published in peer-reviewed medical journals, as made available on PubMed.

The case of Morgellons illustrates how the emergence of a new medically contested illness intersected with and impacted on the diagnostic processes of an existing uncontested psychiatric condition. According to the medical community, Morgellons originated not as a stand-in name for her son’s unknown infectious disease but as a possible manifestation of Leitao’s own psychiatric illness, Munchausen’s by proxy. Moreover, as the ‘putative conditions’ (Spector and Kitsuse 2006) of Morgellons developed from Leitao’s personal problem into a social issue, Morgellons’ symptoms and patient behaviours matched up with the diagnostic criteria of another known psychiatric illness, DP, which has existed in the international medical literature for roughly 100 years. Because of Morgellons and DP’s similarity, doctors routinely diagnosed patients who claimed to have Morgellons as if they were DP patients. This clinical intersection between Morgellons and DP impacted on both the social construction of Morgellons as a contested illness and the existing diagnostic protocol associated with DP.

The interactive relationship between Morgellons and DP only becomes evident when it is viewed in motion. I therefore conceptualise Morgellons as an emergent ‘trajectory’, which originated in the symbolic interactionist work of Strauss (1978, 1993). Here, I follow the trajectory perspective provided by Garrety and Badham (1999), which they formulate in their research on the social construction of technologies, specifically the development and implementation of a new computer system in the workplace. Summarising their model, Garrety and Badham (1999: 279) write: ‘Trajectories exist of complex mixtures of plans, routines, and improvisations. They are not simply unfoldings of initial conditions or strategies, nor are they determined in any straightforward way by social, political, technical, or economic circumstances.’ The distinct feature of Garrety and Badham’s trajectory research is highlighting how people’s interactions constitute micro-level political processes that socially construct the form and content of contemporary technologies.

Key to their trajectory perspective, then, is a politicised conception of people’s everyday social relations. Garrety and Badham (1999: 278-9)write: ‘For us, politics is a collective, communicative activity that is goal-directed and ‘clever’ in some way. … Through interactions … people try to change the meaning of ‘things’ so that particular courses of action become easier or more difficult, and certain assumptions become routine whereas others are excluded’. I adopt this notion of interactionist politics in tracing out the Morgellons trajectory, illuminating the connections between the Morgellons website and the Morgellons contested illness community, the various means by which the political salience of Morgellons became amplified, and how these dynamics relate to the CDC’s investigation of Morgellons and clinicians’ reconsideration of the DP diagnostic protocol. I generally place this analysis within the research on ‘Health Social Movements’ (Brown et al. 2003a, 2003b, 2004, 2006) and ‘Medically Unexplained Physical Symptoms’ (Zavestoski et al. 2004). The spirit of ‘Health Social Movements’ (HSM) and ‘Medically Unexplained Physical Symptoms’ (MUPS) studies involves how lay expertise and embodied illness experiences can become politicised and serve as mechanisms in challenging biomedical and scientific knowledge, ideally democratising the ‘dominant epidemiological paradigm’ (Brown et al. 2004). The case of Morgellons shows the ways in which a small contested illness community can utilise the Internet to push its political agenda, attracting the attention of the CDC.

More specifically, I ground this research in two literatures: (1) contested illness studies that investigate the illness experience of patients whose symptoms lack biomedical explanation (Kroll-Smith and Floyd 1997, Kroll-Smith et al. 2000, Dumit 2007, Moss and Teghtsoonian 2008); and (2) medicalisation research (Conrad and Schneider 1992, Conrad and Potter 2000, Conrad 2007), focusing on studies that explore the relationship between the Internet and the expanding contours of medicalisation (Eysenbach et al. 2004, Broom 2005, Fox et al. 2005, Barker 2005, 2008). These two literatures derive from several common sources, namely: growing patient empowerment, the internet’s role in spreading medical information, as well as uniting contested illness identities, the American public’s distrust of the medical community, and people’s mounting anxiety about the natural environment and its impact on their health. But these two literatures also differ. Contested illness research tends to focus on patient empowerment; alternately, medicalisation research interrogates the contours of increasing medical authority (Conrad and Stults 2008).

In what is currently the lone study that directly investigates the possible connection between medicalisation and an internet illness community,Barker’s (2008: 23) analysis of a Fibromyalgia ‘electronic support group’ (ESG) finds that patients’ online communications reify self-diagnosed health conditions and generally ‘encourage the expansion of medicine’s jurisdiction’. Therein, Barker (2008: 32) references Morgellons, writing: ‘online support groups are now mounting demands for the medical acceptance of Morgellons, a condition that most physicians believe to be delusional. Patients, however, maintain that they suffer from an organic condition characterized by itchy fibres under the skin that often appear blue or red in color… But there will also be less fantastical examples.’Barker (2008: 33) calls for studies determining ‘to what extent … ESG participants actually challenge their individual doctors by referencing the knowledge claims of their illness communities, and to what effect?’

As the following analysis will reveal, the sociopolitical processes at play in the Morgellons trajectory dubiously reflect patient empowerment, as well as the resilience and power of medical jurisdiction. With that, this research offers insights into the contested illness and medicalisation literatures, and aims to bridge these two approaches towards medical authority. I do this by highlighting how the clinical intersection of DP and Morgellons illustrates a diagnostic compromise between doctor and patient. First, though, I explain how I gathered my data, which set up my empirical description and subsequent analysis of Morgellons.

Morgellons data: the internet, the media and medical journals

I selected my data sources in an attempt to be both representative of Morgellons discourse and relatively comprehensive, which is feasible given its somewhat recent emergence and small size. In this section, I briefly describe and contextualise the content of the data, which I will explicate in more detail when tracing out of the Morgellons trajectory.

Outlining sources and contextualising data content

The Morgellons website effectively operates as an online headquarters for the Morgellons contested illness community. For example, the website provides links to political tools, a means of collecting research donations, a newsletter, and access to numerous other Morgellons information archives, such as newspaper articles and television transcripts. Though the Morgellons site does not offer a forum for visitors to partake in real-time communication, they are invited to submit and post online their experiences with Morgellons, as well as to sign up to receive e-mail notifications about upcoming Morgellons community events. By examining the entirety of the Morgellons website, I obtained a substantial portion of the pro-Morgellons discourse and its relationship to multiple social fields.

I also analysed the site Morgellonswatch because it represents the most systematic and thorough lay-initiated source aimed at debunking the Morgellons movement. Morgellonswatch claims to provide online ‘[r]esources for Morgellons investigators. Sceptical analysis and discussion’ (http://morgellonswatch.com/). Along with a blog page where people debate the legitimacy of Morgellons, Morgellonswatch vigilantly critiques the postings on the Morgellons site. For example, a section of its homepage reads: ‘The Evidence Indicates: 1. The fibers are environmental and unrelated to any illness 2. Morgellons is not a distinct disease 3. People who think they have ‘Morgellons’ probably have a mixed variety of physical and/or mental illnesses’(http://morgellonswatch.com/). Morgellonswatch is maintained by an anonymous figure; however, the site is currently inactive — a posting dating 3 December 2008 reads: ‘This site is now inactive until there are some major new developments, such as the CDC reporting back. All comments are closed’ (http://morgellonswatch.com/).1

To assess Morgellons’ relationship with the popular media, I used LexisNexisAcademic to retrieve the 387 television transcripts that address Morgellons; this article’s analysis works in detail with the 19 which were aired on major American networks such as ABC, CBS, NBC, CNN,etc. Additionally, I draw on those transcripts from local television stations which are archived on the Morgellons website. I also usedLexisNexisAcademic to locate Morgellons articles in the print media. In total, my analysis focuses on the 10 Morgellons articles published in American newspapers categorised as ‘major world publications’. I also, once again, utilise the several articles from community newspapers and lay-oriented health and science magazines like Psychology Today which are archived on the Morgellons website. Attention to these various archived print and visual media sources is critical because the Morgellons website makes them readily available to a nationwide audience.

For the stance of the medical profession, I searched PubMed for both DP and Morgellons articles and letters published in peer-reviewed journals. Of the over 100 articles on DP, I selected the several domestic and international research reviews of DP, which provide the basic contours of DP’s relationship with clinical practice. Additionally, I analyse in detail the 10 Morgellons articles and letters published in the medical literature to illustrate how the diagnostic processes of both DP and Morgellons itself have changed over the course of the Morgellons trajectory.

Tracing the Morgellons trajectory: from Leitao to the Labs of Kaiser Permanente

Delusional parasitosis (DP) prior to the emergence of Morgellons

Reviews of DP in medical journals indicate that there have been DP cases at the international level for roughly a century. One review article on delusional or psychogenic parasitosis research reads: ‘around the turn of this century, case reports began to appear in the European literature describing a peculiar symptom in which patients considered themselves infested with parasites, when they in fact were not. Variously labelled … psychogenic parasitosis continues to present diagnostic and therapeutic challenges to the clinician’ (Slaughter et al.1998: 491). These articles also indicate that DP is historically a rare though not entirely uncommon condition. For example, one international review article notes that a total of roughly 300 DP cases have been recorded in the existing medical literature (Bhatia et al. 2000).

Specific diagnostic protocols for handling DP patients are also documented in contemporary medical journals. For example, Dr. Koo and Dr. Lee (2001: 289) write:

“The first step in trying to manage patients with [DP] successfully is to establish a good rapport with the patient. This begins with conducting a thorough and complete skin examination. Patients often complain that previous physicians did not pay attention to their skin. Sometimes, patients press for skin biopsy … It is also important to look at various ‘specimens’ that the patient may bring to the dermatologist’s office, again to show to the patient that his or her concerns are being taken seriously.”

Written prior to the emergence of the Morgellons trajectory, this description of DP highlights two key dynamics: DP patients often resist psychiatric etiology and they are distrustful of physicians. Therefore, in order to enhance doctor-patient rapport, Dr. Koo and Dr. Lee advise clinicians to administer a thorough skin examination of DP patients, and to take a serious approach to the patients’‘specimens’, cautiously catering to patients’ physiological experience of the illness.

Trajectory origin: online emergence of the contested illness Morgellons

Leitao stopped seeking assistance from the medical profession when one of the physicians she consulted — a renowned dermatologist at Johns Hopkins School of Medicine — denied the severity of her son’s sickness and suggested that she might be suffering from Munchausen’s by proxy (DeVita-Raeburn 2007). This prompted Leitao, who holds a BS (first degree) in Biology and has experience as a medical researcher, to investigate her son’s condition herself. She began examining samples of his skin under a lay-person’s microscope and used online illness support groups to consult with other people suffering from various skin afflictions such as scabies.

She also researched dermatological conditions in medical textbooks. In her reading, she discovered a medieval French skin disease named Morgellons, whose symptoms were similar to her son’s. In 2002, Leitao appropriated the moniker Morgellons as a stand-in for her son’s sickness, while also creating the ‘Morgellons Research Fund’ (MRF) and launching the Morgellons website, which she used to solicit and spread information about her son’s illness. While not initially procuring any medical feedback, the website did unexpectedly tap into what would become the Morgellons contested illness community. As an article in New Science recounts: ‘[Leitao] appropriated the name [Morgellons] and set up a non-profit organisation, the Morgellons Research Foundation (MRF), in the hope of attracting advice or help from scientists. To her surprise, she began receiving thousands of emails from people claiming to have the same thing’ (Elkan 2007). Though stationed in Pennsylvania, Leitao invited families affected by Morgellons nationwide to register on the website, which developed into an online home for the Morgellons illness community. This unforeseen connection and unification of purported Morgellons sufferers marks the crystallisation of the Morgellons trajectory.

In addition to cataloguing people’s names and locations, the site assisted the Morgellons illness community by providing online political tools, such as advocacy letter templates addressed to various branches within the state and federal government, like the United States House of Congress and the CDC. Another part of the website focused on archiving Morgellons documents. The first piece of archived correspondence is a letter dated 31 October 2003 letter from California health officials, which responds to Leitao’s inquiry about the number of registered Morgellons patients living in the Northern California area — the letter reads: ‘After considerable thought to the skin conditions that you [i.e. Leitao] have brought to our attention and after conferring with the staff at the [CDC], we … still feel that patients with such skin conditions would best benefit from a thorough clinical and laboratory evaluation by medical specialists’ (http://www.morgellons.org/; see CDC link). In 2004, CDC officials wrote two other response letters, both sent to the senators in Texas and Florida who contacted the CDC on behalf of their constituents worried about Morgellons. Also archived online, both of these exchanges between the Texas and Florida senators and the CDC indicate that these constituents learned of their putative health condition via the Morgellons and MRF website.

Trajectory alteration: Morgellons intersects with DP

The emerging Morgellons trajectory became altered by the resemblance between DP and Morgellons symptoms. The main similarity between DP and Morgellons patients is their belief that a foreign substance (such as a bug, fibre, parasite, or pathogen) has burrowed its way beneath their skin, which patients attempt to extract, resulting in their visible lesions. Leitao herself was initially unaware that there were so many Morgellons sufferers nationwide, and she was likewise presumably unaware that her son’s Morgellons symptoms were virtually identical to those of DP, as neither she nor her son had elicited that diagnosis. Yet, the link between DP and Morgellons patients begins to emerge in 2004. In what may be the first explicit connection between DP and Morgellons in the media, a San Francisco television station aired a brief segment about a woman’s experience with Morgellons; the woman states:

“There was a crawling sensation on my face and it’s usually because something’s coming out from underneath my skin, and what I was seeing coming out of my skin matched exactly what all these other pictures were [on MRF website], so I don’t think we are all having this mass delusion. … The OP’s diagnosis, which is delusional parasitosis, I was quite sure that I wasn’t delusional” (Fowler 2004).

Moreover, both DP and Morgellons patients routinely bring fibres, bugs, or what Dr. Koo and Dr. Lee (2001) call ‘specimens’ to the clinic as evidence that their symptoms are not psychiatric. As an article in Psychology Today states: ‘Most [clinicians] have no doubt that what they’re seeing is delusional parasitosis. One reason is that Morgellons patients often present them with what they consider to be hallmark evidence: a sample of what’s in their skin. Psychiatrists call it ‘the matchbox sign’, a reference to the little containers in which the samples are typically stored’ (DeVita-Raeburn 2007). Therefore, in addition to clinical symptoms, the patient behaviours (i.e. ‘the matchbox sign’) attached to DP cases can prompt clinicians to diagnose self-proclaimed Morgellons patients as psychiatrically ill.

As a result, physicians often refuse to engage with the term Morgellons even as their clinics are witnessing increasing numbers of patients claiming to suffer from the illness. This causes conflict. For example, a man from San Francisco — who was willing to accept a psychiatric diagnosis and treatment for his Morgellons symptoms, though he found them ineffective — describes great dissatisfaction with the medical profession, claiming that ‘he’s still angry when he thinks of the doctors who brushed off his symptoms and insisted he was delusional without bothering to give him a thorough exam’ (Allday 2006). For many Morgellons patients, then, there is a sharp disjuncture between the empathetic and diligent DP diagnostic protocol in the medical literature and the actual diagnostic interactions they encountered. Therefore, it is not only clinicians’ refusal to engage with the diagnostic category of Morgellons but also clinicians’ diagnostic processes that upset some members of the Morgellons community.

This intersection with, and tension between, the medical profession and Morgellons patients impacted on the Morgellons trajectory. First, unlike the historically small number of DP cases reported in the medical literature, the Morgellons community numbered in the thousands. And unlike the DP community in the past, the MRF and the Morgellons website united Morgellons patients and empowered their experience of their illness as physiological. As an apparent result, Morgellons patients began seeking out second opinions from larger medical institutions and directly contacting government health agencies such as the CDC concerning their symptoms. Leitao describes this dynamic as it is played out in San Francisco, which was the primary geographic hotspot of the Morgellons movement: ‘“The California Department of Health Services tells people to go to university medical centers where they are equipped to do research, but the patients get a replay of what happened with their hometown doctors”, said Leitao. Patients get rubber-stamped and then doctors won’t respond to inquiries from patients or the media. “They are so smug and sure they are right”, she said’ (Mullen 2004).2

Trajectory alteration: a scientist acknowledges Morgellons

Despite its growing online illness community, some exposure in the local media, and several letters of acknowledgement from the CDC, the MRF’s success began to plateau in 2004, and the movement was effectively at a standstill by 2006. However, in the winter of 2006, the Morgellons community received an unexpected boost from Dr. Wymore, a scientist at Oklahoma State University’s (OSU) Osteopathic School of Medicine who happened upon the Morgellons website. As one local newspaper reports: ‘[In 2006, Leitao] needs help. Dr. Randy Wymore finds her just in time. The [OSU] assistant professor of pharmacology and physiology stumbles onto Leitao’s website while surfing online. He’s a glutton for unknowns. … So he decides to help Ms. Leitao’ (Harlan 2006). Dr. Wymore and Leitao collaborated, and he obtained Morgellons samples from Leitao, which he ran through several basic screening tests, all of which failed to identify or recognise Morgellons’ organic makeup. Dr. Wymore subsequently secured OSU initiatives to fund research on a small sample of Morgellons patients. Dr. Wymore invited his colleague Dr. Casey, a pediatrician, to assist with examining these patients. ‘Using a dermatoscope — a microscope used for examining skin — Casey clearly saw fibres. These were not just embedded in lesions but were also visible under the surface of unbroken skin and could be removed with tweezers. She observed nothing like them in a control group comprising both healthy patients and those with other dermatological conditions.’ (Elkan 2007).

These research findings launched Morgellons into the media limelight. Tellingly, of the 387 Morgellons television transcripts located byLexisNexisAcademic, 377 — that is, all but 10 of them — took place after Dr. Wymore became involved with the MRF. Nineteen of these transcripts were aired on major American networks, such as CNN, whose content is decidedly sensationalistic. For example, a quote fromThe Washington Times reads: ‘Global interest spiked in 2006 after a series of alarming prime-time reports appeared on CNN, NBC and particularly ABC — where Morgellons was showcased on “Medical Mysteries”, with full color close-ups of ravaged skin and the victims’ personal accounts’ (Harper 2008). Similarly, an excerpt from the Morgellonswatch.com site criticises FOX News’ coverage, writing: ‘Television likes to entertain. When you see television stories about Morgellons, they invariably show someone who has horrific open sores on their skin. This is very dramatic, and elicits sympathy for the sufferers, as well it should. … But the open sores do not always have an entirely physical cause’ (http://www.morgellonswatch.com; see ‘Oh Fox!’ post).

Likewise, after Dr. Wymore’s research, each of the 10 Morgellons articles in major American news sources was published. Representative of these articles, a brief write-up in The Wall Street Journal reads: ‘The Internet has allowed thousands of Morgellons, as they call themselves, to group together and call for recognition in recent years, mainly thanks to the website of the nonprofit Morgellons Research Foundation [MRF]. … Most doctors are skeptical of their claims, however’ (Moroney 2007). Among the other Morgellons articles in US newspapers, the drama tends to increase as the newspaper’s circulation decreases. Community newspapers are perhaps the most sensational: ‘In the past, patients with psychological disorders would often be beaten for disobedience and jailed for inappropriate behavior due to the lack of understanding of their ailment. Physicians would not take the time to perform a proper examination, nor have the compassion to listen to the afflicted. The same problem has arisen with Morgellons Disease…’ (Ezra 2006).

The MRF and the Morgellons website evolved in step with Morgellons’ increasing visibility and scientific legitimacy. Summarising this development, an excerpt from the Morgellons site reads: ‘The MRF was established in 2002. Our primary focus during the first several years was to raise public awareness of the disease. In the beginning, the foundation was responsible for taking a disease, which was unnamed and largely misunderstood, from obscurity into the world of science. The MRF was very successful in this endeavor’ (http://www.morgellons.org/; see ‘Research’ link). Attesting to this success, the MRF now features its own medical advisory board, which includes several doctors, nurses, and scientists. Though the stance of these MRF medical experts is a distinct minority within the profession, they were instrumental in the development of an official Morgellons ‘Case Definition’, which functions as a political tool and solidifies the illness experience of the Morgellons community. For example, the case definition claims that there is recent scientific evidence ‘… strongly supporting the likelihood that DP is a prematurely assigned label to an organic, rather than purely psychiatric disease’ (http://www.morgellons.org/; see ‘Case Definition’). Taken together, then, Dr. Wymore’s findings, the development of an MRF medical board, and their drafting of a Morgellons case definition encapsulate how the Morgellons trajectory evolved from Leitao’s personal problem to a scientifically empowered and politically engaged contested illness community.3

Trajectory alteration: the CDC and mainstream medicine acknowledge Morgellons

The increasing publicity of Morgellons triggered more political response from government officials, placing pressure on the CDC. For example, in the spring of 2006, several months after Dr. Wymore’s research at OSU was made public, a California Senator sent a letter to the CDC about the increasing concern over Morgellons: ‘I have received numerous phone calls and letters from constituents regarding Morgellons disease. These calls and letters express concern for those who are afflicted by Morgellons and the need for the CDC to take more aggressive action … I would be interested to know what, if any, actions the CDC has instituted … regarding Morgellons Disease’(http://www.morgellons.com/D%20-Feinstein%20to%20CDC.JPG).

Subsequently, in June 2006 the CDC announced its intent to formally research Morgellons — as the Morgellons site reads: ‘CDC spokesperson announces to media that CDC task force devoted to Morgellons disease, has been formed, and has begun having internal meetings’ (http://www.morgellons.org/; see ‘CDC’ link). In the spring of 2007, the CDC removed DP from its website, and shortly thereafter posted a site titled ‘Unexplained Dermopathy: ‘AKA Morgellons’ (http://www.cdc.gov/unexplaineddermopathy/). Finally, in August 2007, the CDC website elaborated on its Morgellons research initiative: ‘[The CDC] has received an increased number of inquiries regarding an unexplained skin condition which some refer to as ‘Morgellons.’… The CDC is conducting an epidemiologic investigation. …The primary goals of the investigation are to better describe the clinical and epidemiologic features of this condition and to generate hypotheses about possible risk factors’ (http://www.cdc.gov/unexplaineddermopathy/investigation.html).

Six months after the CDC first announced its research agenda, each of the ten Morgellons letters and articles in peer-reviewed medical journals were published. Two of these are letters written by MRF affiliates, and they allege that the medical community’s refusal to accept that Morgellons may be a new and mysterious pathogen has led to the unjust suffering of Morgellons patients (Savely et al. 2006, Harvey 2007). The remaining eight Morgellons letters and articles are authored by clinicians — mostly dermatologists — who have no affiliation with the MRF. The first four of these publications (Koblenzer 2006a, 2006b, Murase et al. 2006, Waddell and Burke 2006), narrate three common themes: (1) each of the Morgellons patients who came to their clinics were thoroughly examined and found to be physically healthy apart from their skin lesions, and were therefore diagnosed with DP; (2) the Morgellons patients said that they learned about Morgellons from the MRF website, which these physicians investigated and deemed scientifically bereft, though compelling to the lay community; (3) the letters discuss how clinicians should handle Morgellons patients in the future.

In terms of diagnostic protocol, these publications resemble Dr. Koo and Dr. Lee’s (2001) clinical guidelines for DP patients, meaning that each stress the importance of being empathetic, and validating the patient’s illness experience. Moreover, each of these clinicians indicates that while Morgellons should not be validated as an organic disease, the name Morgellons itself may be used to establish a positive rapport with patients, as it helps bypass the stigma associated with the psychiatric diagnostic category DP. For example, one set of authors write: ‘“Morgellons disease” should not validate an association with an infectious disease process. ... However, we found the term to be of paramount importance in establishing patient confidence and in developing patient–physician rapport throughout this patient’s care’(Muraseet al. 2006: 913). Dr. Waddell and Dr. Burke (2006: 914) likewise state: ‘The precise pathophysiolog(ies) that give rise … to the clinical manifestations described as Morgellons disease remain to be determined. The latter term [i.e. Morgellons] may prove useful in discussing and investigating it. On the other hand, unsubstantiated claims about what causes it may be incorrect and misleading’.

In the next three Morgellons publications (Accordino et al. 2008, Robles 2008, Robles et al. 2008), clinicians’ appropriation of Morgellons becomes more explicit. This change in the Morgellons trajectory is illuminated in a special issue of Dermatologic Therapy (Koo 2008: 1), which aims to distinguish between ‘delusions of parasitosis and its management’ and ‘the new and controversial entity of Morgellons disease’. In the Morgellons article itself, Dr. Accordino and colleagues (2008: 8) — one of which is Dr. Koo — first ‘discuss the potential benefit of using this diagnostic term [Morgellons] as a means of building trust and rapport with patients to maximize treatment benefit’. They then elaborate on diagnostic process, writing: ‘The present authors also suggest “meeting the patient halfway” and creating a therapeutic alliance when providing dermatologic treatment by taking their cutaneous symptoms seriously enough to provide both topical ointments as well as antipsychotic medications’ (Accordino et al. 2008: 8). This ‘halfway’ approach is effectively a more detailed version of the DP protocol written by Dr. Koo and Dr. Lee (2001), one which directly addresses the huge influx of Morgellons patients whose symptoms are decidedly similar to DP.

The article by Dr. Robles and colleagues (2008) also distinguishes between DP and Morgellons, and they also believe that using the name Morgellons may enhance doctor-patient rapport and promote patients’ willingness to take psychiatric medication. Moreover, they suggest that Morgellons is not only a substitutive label for DP but its own diagnostic sub-category by highlighting the differences between the behaviours of Morgellons and DP patients:

“We consider Morgellons to be within the spectrum of [DP], except that the patients are focused not on parasites but on ‘unusual material’ that they believe is in their skin. … They frequently dig at their lesions with their own nails as well as house-hold items such as nail clippers or tweezers … It is important to ask patients if they use instruments in addition to fingernails because in our experience, the use of mechanical devices portends a more malignant psychological profile’” (Robles et al. 2008: 2).

Likewise, in a second article, Dr. Robles (2008: 793) elaborates on the ‘tweezer’ diagnostic heuristic, writing: ‘Similar to the ‘matchbox sign’ for delusions of parasitosis, the “tweezer sign” is likely to be very characteristic of this [Morgellons] condition. Physicians should include this question as part of their history taking …’.

In these two articles by Dr. Robles and colleagues, Morgellons is more pointedly framed as its own psychiatric condition, one which slightly distinguishes itself from DP in that patients typically perseverate on foreign substances rather than parasites; and, among Morgellons sufferers, the authors make a profile distinction based on which object a patient uses to dig at the skin. Therefore, to varying degrees, these three Morgellons articles published in 2008 reconfigure Morgellons as not only an incarnation of DP but as a unique sub-stratum within the DP spectrum, one with its own patient population, diagnostic category, and diagnostic processes.

Morgellons: democratising medicine or medicalising society?

The Morgellons trajectory is currently at a standstill. Since 2006, doctors working under Kaiser Permanente have been examining the skin of Morgellons patients and sending the samples to the Kaiser labs for testing and electronic data recording. While the preliminary findings were scheduled for the summer of 2008, the CDC continues to delay their release indefinitely. Meanwhile, the chief researcher for the CDC, Dr. Michelle Pearson states that ‘over the last year or so we’ve received about 1200 inquiries related to [Morgellons]’ (http://www.cdc.gov/media/transcripts/2008/t080116.htm). However, the sociopolitical processes at play in the Morgellons trajectory thus far still offer insight to the changing character of contemporary medicine.

Contested illness, diagnostic compromise, and medicalisation

Reflective of a broader socio-historical trend, Kroll-Smith and Floyd’s (1997) study of the highly contested illness Multiple Chemical Sensitivity (MCS) explores how patients — through what they conceptualise as a ‘practical epistemology’— reconfigure biomedical logic in order to make sense of their bodies’ intolerance of putatively benign chemicals emitting from everyday objects like perfume or dry-cleaned clothing; that is, because MCS’s etiology lacks a scientific explanation, patients do their best to rationally theorise the conditions of their contested illness, appropriating biomedical rhetoric in their pragmatic attempt to figure out what it is that makes them feel sick. Summarising this dynamic, they (Kroll-Smith and Floyd 1997: 12) write:

“The environmentally ill [i.e. those with MCS] and their counterparts in other citizen medicine movements are neither modern nor postmodern. They do not surrender their self-stories to the administration of medical expertise, as good moderns do; nor do they abandon medical expertise to revel in the pure subjectivity of their stories, as good postmoderns do. Rather, they join the self-story to expertise, constructing narratives of their sick bodies using the complicated languages of biomedicine. In this fashion, MCS is a critique of both modernity and postmodernity and an invitation to revisit these important ideas as we think about the history we are making.”

Accompanying this influx of contested illnesses like MCS is the central role that the internet — and specifically ESGs — play in what is colloquially called ‘e-health@. As Barker (2008: 20) notes: ‘In effect, nearly any sufferer of nearly any condition can type his or her affliction into a search engine and electronically connect with a group of fellow sufferers’. Yet, according to Barker (2008: 20), ‘even as peer-to-peer ESGs have become a ubiquitous feature of the Internet, we know remarkably little about them.’ The case of Morgellons, then, is situated at the intersection of these two socio-historical trends of patient empowerment, and in turn offers insights to the role of ESGs in uniting and politicising a contested illness community, and the ways in which it bolsters their medical legitimacy, impacts on clinical practice, and potentially facilitates expanding medicalisation.

First, the MRF and Morgellons websites illustrate how the internet can empower and politicise a contested illness community. As an article inPopular Mechanics (Chertoff 2005) summarises: ‘Members of the Morgellons online community say that, like those who suffer from breast cancer and AIDS, they merely want appropriate resources devoted to their illness’. Morgellons therefore speaks to Zavestoski and colleagues’ (2004: 172) article on four contested illnesses or MUPS — Fibromyalgia, Chronic Fatigue Syndrome, Gulf War Illnesses, and Multiple Chemical Sensitivity — wherein they invite researchers to discern the ‘centrality of mobilization around these mysterious diseases, whether it takes place in a general social mobilization or in a more focused health social movement’. Because the Morgellons website played a critical role in transforming the Morgellons trajectory from Leitao’s personal trouble into a social issue, it shows how a concentrated online contested illness community can draw on wider social and cultural resources, cutting across multiple fields in its political efforts.

Secondly, Morgellons reveals how the internet impacts on clinical practice in a number of different ways. In the most basic sense, Morgellons shows how clinicians pragmatically respond to online contested illness communities. For example, Dr. Koblenzer (2006a: 921) states: ‘Clearly, as more and more of our patients discover this [MRF] site, there will be an ever greater waste of valuable time and resources on fruitless research into fibers, fluffs, irrelevant bacteria, and innocuous worms and insects. It behoves us, therefore, as dermatologists, not only to be aware of this phenomenon, but also each to develop an effective way to work with these patients.’ Dr. Koblenzer urges medical professionals to take note of such online phenomena as Morgellons because these illnesses are becoming more frequent, and physicians’ knowledge of them may save valuable time and resources.

In addition to logistical issues — such as wasted time in the clinic — the medical literature on Morgellons indicates that clinicians may need to devise new diagnostic strategies to ‘work with these patients’ in a productive fashion — that is, ESGs like the Morgellons website can prompt physicians to adopt their own ‘practical epistemologies’ in order to treat the growing number of contested illness patients. The appropriation of the name Morgellons exemplifies this need. As one clinician states:

“I have established a close relationship with the patient … by referring to her [DP] as Morgellons disease. … I emphasized that I did not doubt the authenticity of the sensations she was experiencing, and I empathized how disconcerting it must be to feel bugs crawling and stinging her skin. I explained that sometimes medications that psychiatrists use to calm nerve signals help patients with Morgellons disease” (Murase et al. 2006: 913).

Here, Morgellons demonstrates how the unhinging of diagnostic categories from diagnostic processes can facilitate doctor-patient interaction, allowing for the respective illness experiences of the doctor and the patient to be partially reconciled. More particularly, this appropriation of the term Morgellons functions as a diagnostic compromise between patients and physicians: doctors semantically surrender the stigmatic label of DP in order to maintain control over their biomedical definition of the illness; patients surrender their claim of pathogenic etiology in order to maintain personal control over their physiological illness experience.

This notion of doctor-patient compromise differs from Barker’s (2008: 31) notion of physician compliance, wherein empowered patients in consumer-driven medicine exact consent over their physicians; she writes that physician compliance is ‘premised on an unquestioning acceptance of patients’ embodied knowledge … When such compliance is not forthcoming, many continue to shop for what they really want’. Alternately, in the case of Morgellons, compromise more aptly characterises the doctor-patient relationship: Morgellons patients secure a more physiological illness experience within the diagnostic encounter, whereas clinicians retain diagnostic control over the biomedical meaning of their illness and its psychiatric treatment. For example, Dr. Robles and colleagues’ (2008: 2) distinction between Morgellons and DP suggests a more nuanced approach to delusional disorders: ‘Although [DP and Morgellons patients] are classically referred to as ‘delusional’, the beliefs of some patients exist on a spectrum from obsession to delusion and, as such, some patients may at least temporarily, be convinced otherwise after counseling. An accepting, non-confrontational approach is more likely to be successful in forming an alliance with patients than confronting patients on their impaired reality testing’.

Furthermore, these examples of doctor-patient compromise resonate with what Sharpe and Carson (2001: 926) call an overall ‘paradigm shift’ in the diagnoses of the growing number of contested illnesses; they write: ‘We propose a paradigm shift in which unexplained symptoms areremedicalised around the notion of a functional disturbance of the nervous system and treatments currently considered ‘psychiatric’ are integrated into general medical care’. To differing degrees, Morgellons articles engage with this notion of paradigm shift — as is captured in the notion of ‘meeting the patient halfway’, wherein dermatologists may use the name Morgellons rather than DP, present Morgellons patients with a combination of topical ointments and psychiatric medication, and more thoroughly relate to the patient’s illness experience.

These dynamics contextualise the potentially medicalised status of Morgellons. If the researchers at Kaiser Permanente find that Morgellons has an organic etiology, it would constitute a new disease category. However, if no such organic origin is found, clinicians’ current — and possibly future — appropriation of the label Morgellons should not necessarily be understood as a case of expanding medicalisation. The substitution of the diagnostic category DP with the name and diagnostic processes attached to Morgellons may not signify the intensification or expansion of the medical ‘gaze’ (Foucault 1994) but rather its retreat or even transformation, a slight slackening of the mind-body duality typical of biomedicine.

Importantly, these processes of doctor-patient compromise are comparable to the diagnostic protocols of other contested illnesses in the medical literature. For example, Dr. Huibers and Dr. Wessely (2006: 895) contend a similar point regarding the positive and negative aspects of formally diagnosing patients with Chronic Fatigue Syndrome (CFS), whose constellation of physical and psychological symptoms have no confirmed biomedical cause; they write:

“The answer to the question of ‘to label or not to label?’ may eventually turn out to depend not on the label, but what that label implies. Unfortunately or not, CFS has gained a realm of its own in many people’s lives, and there is no use in ignoring that. In the absence of definitive data, and in the expectation that such definitive data will never appear, our final judgement is that it is acceptable to make diagnoses such as CFS, provided that this is the beginning, and not the end, of the therapeutic encounter.”

Likewise, Moss’s (2008: 173) analysis of Myalgic Encephalomyelitis (ME) — a contested illness category that is intimately tied to and sometimes equated with CFS — expands upon a similar point about the evolving relationship between existing medical categories and their associated diagnostic protocols: ‘ME becomes an example of where the seemingly fixed discursive category has moved away from its original conception (as a category linked to a disease process) towards a more materially informed discursive category corresponding to the experience of the ill body’.

Therefore, akin to the changing contours of Morgellons and DP, the diagnostic protocols attached to ME or CFS may vary across different patients and according to the interpretation of the particular clinicians. And these interpretations increasingly attempt to reconcile patients’ physiological interpretation of their symptoms while not entirely validating that they have an organic disease, indicating a diagnostic compromise between their two perspectives. These changes in different contested illnesses suggest a larger trend wherein contested illness categories themselves are being subtly transformed through varying diagnostic and treatment processes.

Conclusion

In their assessment of these basic differences between the contested illness and medicalisation literatures, Conrad and Stults (2008: 334)write: ‘In sum, contestation and medicalization are linked in a number of different ways. Contestation can serve to limit medicalization, yet much contestation of illness ultimately seeks to increase medicalization. Among the interesting places for continued scholarly research are those sites where the processes of contestation and processes of medicalization rub up against one another’. To that end, I have introduced the idea of doctor-patient compromise, which I place alongside Barker’s related conception of physician compliance — the latter illuminating how consumer-driven medicine and ESGs can encourage physicians’ catering to patient demands and medical category expansion, the former how diagnostic categories and processes can be tailored to be mutually acceptable to physicians and patients. Future studies can better determine the degree to which compliance and compromise variously relate to contested illnesses, patients’ illness experience, and expanding medicalisation. This appears to be a worthwhile avenue for research given the prevalence of ESGs and the increasing numbers of contested illnesses, which together have the potential to expand medicalisation as well as significantly transform these medical categories and their associated diagnostic processes.

Footnotes

A Google search for ‘Morgellons’ currently yields over 350,000 hits. Some of these sites are ESGs comparable to the original Morgellons site; some of them involve real-time communication among patients; and others are much more unorthodox in their views — for example, some sites claim Morgellons is a terrorist plot and others argue that its infections are caused by microscopic robots intruding one’s body.

Of note, Dr. Koo is in the Department of Dermatology, University of California San Francisco Medical Center.

Dr. Wymore is no longer affiliated to the MRF; there is an OSU web page concerning his Morgellons research (see:http://www.healthsciences.okstate.edu/morgellons/).

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