Morgellons fibers come in bizarre forms and bright colors which led virtually everyone to believe they were foreign to the body and probably had an environmental origin. Delusional parasitosis was the diagnosis. Patients reported the majority of doctors dismissing the condition as imagined without examining the lesions or fibers and treated for psychosis.
This hypothesis was adopted by the CDC, forcing the disease and it's sufferers further on the margins. Being told there was no medical cause, and given the CDC's position, they resorted to explanations that attempted to reconcile their experiences with the reaction from the medical establishment.
Discussions took place online, and given the constraints, possible but unlikely theories were proposed, including super parasites, extra terrestrial organisms or implants, and secret bioweapons. The discussions centering on disease etiology entertained far fetched theories. Doctors felt validated and the public who trust in doctors assessments agreed - these folks sound delusional - it's all in the imagination after all.
Morgellons sufferers and possibly some genuinely delusional persons brought in samples of tissue, hair, and fibers. For reasons having to do with static attraction, detailed in another part of the explanation, many likely brought in samples of environmental debris, dust, and commercially familiar fibers. This was the first visible point of divergence.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3266263/?report=reader#s2title
http://www.mayoclinic.org/morgellons-disease/art-20044996?pg=2
I speculate that the position by the medical community was taken in earnest, based upon what appeared to be inconsistent physical evidence. Others, not having encountered the disease, trusted the observations and recommendations of their peers and professional organizations. That was reasonable. It gradually shifted into an unreasonable stance when the profession, seemingly en masse, stopped listening to the patients.
Those afflicted by Morgellons Disease felt their credibility attacked and felt the effect personally. They were ill, scared, and proceeding blindly in the margins. Losing the support of their doctors meant losing insurance coverage and disability assistance. To avoid the scarlet letter of a serious and erroneous mental illness diagnosis, they suffered quietly.
The general response by MD sufferers was understandably heavily critical, but the conversation had now turned to blame, shame, and name calling. Patients verbal thrashings, fueled by fear and frustration started to resemble those of a person affected with psychosis. The collateral effects of the doctors' opinion on the social, personal, and professional lives of MD sufferers were not considered as potential sources of agitation.
Subsequently, ambiguous symptoms would be interpreted as an extension of the accepted theory of delusion and did not prompt research or investigation. .
E.g. 1. Sensations of subdermal movement and electricity on the skin were allegedly caused by hallucinations from illicit drug use. Physicians did not entertain theories of an underlying pathology (which may have accounted for the self medication as well), cytoskeletal properties and (structural properties) environmental factors (static discharge) were also left unexamined.
E.g. 2. Increased reports from disparate geographic and demographic locations were explained as "mass delusion," a non-existent psychiatric condition. Maybe the doctor couldn't recall the names of the two other similar conditions, historically used to deny women medical treatment "mass psychogenic illness" or "mass hysteria." That's probably because those conditions have not been recognized as a diagnosable illness. Critics emphasized its overuse and disproportionate use against vulnerable populations.
Even assuming some new mass psychogenic illness was to blame, no research into legitimate questions with public health implications ensued. Why did those claiming illness, not share exposure to a common precipitant? Why are children and those in rural locations without Internet access finding out about their supposed shared delusions from the physician? Why did Morgellons disease arise so disproportionately from the dozens of other somatic conditions described and discussed online? Why were so many professionals willing to give up their careers to engage in a supposed mass delusion? What caused the disproportionate numbers of cohabiting partners who verified the observations of MD sufferers? Though all agreed that this was a unique, persistent, and debilitating type of delusion, research was not the response, stronger psychotropic drugs were.
The eventual categorical dismissal and condescension toward the patients drove the camps apart. Any remaining hope in a discussion on medical terms was obstructed by the poor use of language. Without knowing what constituted a mass delusion, patients were implicitly denied an avenue to demonstrate their credibility. The population entertained ever grander conspiracies, fumbling for an explanation.
E.g. 3 Correlation between some alleviation of visible symptoms and the prescribed course of psychotropic medication was assumed to be causal and interpreted as vindication of the delusional parasitosis theory. Selective reporting in journals was also interpreted as a vindication, without examination of potential bias in the reporting. Literature reviews now produced additional false confidence in the existence of delusional parasitosis, and the chances for research into infectious origin diminished.
E.g. 4. A continued belief in MD sufferers' infection even after patients took psychotropic medications and the outward symptoms disappeared was explained as a unique feature to this delusion.
E.g. 5. Belief by those living with someone with Morgellons Disease, typically family members and spouses, led to a surge of the dubious "double delusion," diagnosis, a phenomenon described as a "folie a deux". If an MD sufferer brought in more family or friends who corroborated the experiences, they were considered delusional too (in a "folie a trois, quatre, cinq" etc.) [I wonder if an upper bound has ever been described or if it can accommodate everyone the MD sufferer knows.]
E.g. 6. Extreme persistence in the sufferer's belief and anger at the suggestion of a psychiatric origin for Morgellons symptoms prompted physicians to recommend and prescribe use strong antipsychotic drugs.
Consistent with the history of the medical profession's assessment of credibility from female patients, it is possible that the higher percentage of women reporting Morgellons Disease symptoms, as opposed to men, contributed to its delayed recognition.
The evolution of the disagreement does not support the idea that physician involvement in a high-level corporate or government conspiracy. They did, however, put MD sufferers in a Catch-22 of sorts. That is, if MD sufferers wanted treatment from doctors, they wld have to accept the conclusion that they were simply suffering a complex delusion. Accepting this would mean that their claims to an infection would be met with psychiatric drugs. Or they could persist and face ridicule, sometimes aggression, and always rejection.
How long should a rational person argue against a claim that s/he and everyone you associated with were incapable of perceiving the truth or a pathological liar? How could one disprove it? Attempts to use objective evidence, like actual fiber samples, were interpreted as signs that the deep seated delusion existed ("matchbox sign" or "ziploc sign"). As mentioned earlier, anyone who came in and supported your observations was inherently untrustworthy and delusional - as a matter of medical science.
Some sufferers researched on their own. Some went to alternative medicine. Others, already neurologically compromised and incapacitated, faded away. The community of the ignored congregated online, and they shared experiences to alleviate some anxiety. Everyone wanted to know what would happen to them next. All the while, the medical establishment's firm position gave the public the confidence to chastise, pity, and mock the vulnerable population about their elaborate delusion. Families fractured. Savings dwindled. Health deteriorated.
Since then, journals reflect several clinically confirmed extractions and molecular analysis of the fibers (all containing hair and skin related material) and evidence indicating an infectious pathogen. Stanford University has a physician on the Medical Advisory Board for the Morgellons Disease research: http://www.thecehf.org/medical-advisory-board.html
It seems that skepticism remains though - possibly due to further unexplained implausible characteristics of the disease, but possibly also because the debate caused both sides to feel and act as if they were in a personal argument. It produced a toxic climate wherein productive debate and experimentation were virtually nonexistent.
My experience in academic and clinical science is very limited, but I believe in the effectiveness of the scientific method. Many of my interests outside of the courtroom involve investigating the world around me. I participate in the communities and have positive experiences.
Here, in the Morgellons Disease debate, doctors and academics seem essentially to be accusing each other of fraud. When an emerging disease is discovered, I've seen methods reviewed, results validated, and kudos given. Unresolved questions became the subject of future studies. Here, the unresolved questions about other aspects of Morgellons Disease were used in an attempt to discredit papers, discredit the methods, and assault the integrity of a colleague.
Regardless, time goes on, and time runs out. This is my olive branch - my request for all of us to put effort into trusting and working with each other. Every delay in recognition of this infectious disease turns a the story of success into a story of pain and arrogance. Let's not create a lesson on the backs of the ill. I hope that my theories and research bring about a discussion and a return to an environment of serious inquiry. I would like nothing more than to see doctors doing what they do best and MD sufferers becoming MD patients. Besides, I'm a much better lawyer than a molecular biologist.
