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Worst Of The Worst

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British “Ghost Writer” Makes Ghastly Mistakes re: Morgellons
A Critique of Will Storr’s Guardian Article by Elizabeth Rasmussen, PhD
CEHF Scientific Advisory Board

Will Storr went to a medical conference apparently looking for weird and colorful material to write about. He assumed that the product would be at the least, harmless and entertaining. Already, he’d “dressed up as a woman to impress the transexual leader of radical pro-suicide campaigners [sic] The Church of Euthansia [sic], trained in jungle warfare with the British army in Belize, been arrested and then deported under armed guard from LA . . . . [D]riven at 140mph down A-roads with illegal street-car racers near Leeds, had his head sliced open by Backyard Wrestlers in Middlesbrough and performed a stand-up comedy routine in front of a load of students in Portsmouth” according to the blurb on the Random House site advertising his new book: Will Storr vs. The Supernatural:: One Man’s search for the truth about ghosts.” http://www.randomhouse.co.uk/authors/will-storr

Hardly a fitting background for one to be taken seriously when writing about a medical issue! Mr. Storr seemed under the illusion that he would be educating people about a little understood illness. The resulting article, “Morgellons: A hidden epidemic or mass hysteria? Appeared in the The Guardian, Saturday 7 May 2011 http://www.guardian.co.uk/lifeandstyle/2011/may/07/morgellons-mysterious-illness Submitting an article about suffering people to a health and wellness section of a global publication, carries with it a responsibility to get the facts right. Medical and scientific evidence were generously offered to him, much of which he misreported. It was hoped, since he claimed to be a journalist, he would at least pay attention to the most basic of journalistic responsibilities—to get the facts right and to be fair. He could not even manage those basic essentials of journalism. Aside from his accurate repeat of Dr. Wymore’s report that Morgellons fibers did not match anything in the forensic data base at the Tulsa Police Department, little else Storr reported about the conference or the illness was accurate. As background material, Mr. Storr described Ms. Leitao, who named the current illness Morgellons, as using a “toy microscope,” when his source identified instead an inexpensive field microscope. The source went on to say, “She’s looked thousands of times into microscopes . . . first as a biology student at the University of Massachusetts-Boston, and later for five years as a medical researcher at two Boston hospitals.” (Pittsburgh Post Gazette 2006 http://www.post-gazette.com/pg/06204/707970-85.stm#ixzz1Upeu63FK )

Mr. Storr described the sponsor of the conference, the Charles E. Holman Foundation (CEHF) as a “campaign group,” implying it was a political organization. It is an educational and support organization that helps to fund medical research and sponsors SCIENTIFIC/MEDICAL conferences, such as the one he attended, but from which he learned little. What a waste of an opportunity to learn something of value from clinical and research presentations to relate to the public through the global press! The material Dr. Randy Wymore (physiologist, pharmacologist, on the faculty of the Oklahoma State University Center for Health Sciences, and Director of Morgellons research) reported as environmental material was presented as environmental material, NOT from Morgellons patients, as Storr incorrectly reported. Dr. Wymore clearly stated he was testing the lab to determine its technical expertise and accuracy. In Dr. Wymore’s presentation, one sample shown, described as resembling a fungal fiber, was from a Morgellons patient. It was described as distinct, of biological origin, unique and NOT common environmental material. Another slide showed material that had yet to be completely analyzed. (Please see the DVD of Dr. Wymore’s presentation that can be purchased from the CEHF to learn the facts.) Misinformation harms suffering people and makes it more difficult for them to get help. It makes it more difficult for researchers and the CEHF to educate the public with the material presented because of all the misinformation that now has to be corrected and overcome.

Mr. Storr searched for old invalid stereotypical bits that fit with his bias, which he uncritically repeated. One article he chose, interestingly, contained this quote: “Ettmuller indeed challenges us to the Test of Experience, and affirms by the Assistance of the Microscope . . .” (LeClerc, cited by Accordino et al, 2008), http://onlinelibrary.wiley.com/doi/10.1111/j.1529-8019.2008.00164.x/full ) about how the ancient doctors argued about what they saw under a microscope. Many present day dermatologists, with much more modern equipment to choose from, ironically, often refuse to examine the skin at all, and often refuse even to go near patients before diagnosing them with a delusional disorder and accusing patients of creating their own lesions. Dr. Ginger Savely, not a dermatologist, was the first clinician to follow the advice of Ettmuller and examine the skin with microscopy and has reported in her medical publications about Morgellons that the subcutaneous fibers are real and are the unique diagnostic feature of Morgellons. A recent work of hers described 122 cases of Morgellons with objectively verified subcutaneous fibers and listed the characteristics of the illness. (See Dr. Savely’s website for a list of her publications documenting the fibers.) Patients have been victimized by the old stereotypes for years, and now, thanks to Mr. Storr, they will continue to be victimized for as long as his column is available. Patients who are ill, and who are seen by doctors who will not examine them before assuming a psychiatric diagnosis, are forced by the doctors’ incompetence to seek help elsewhere, so seeing multiple doctors is more a reflection that the doctors seen are not competent in the area of the patients’ illness, not a characteristic of patients with any particular disorder.

Antipsychotics have adverse side effects, some not reversible and some fatal. Doctors who do not examine patients thoroughly before prescribing antipsychotics may run the risk of malpractice suits. Because Mr. Storr developed a psychogenic itch after finding harmless environmental fibers on his hand, he shifted his focus to his own itch and contacted Dr. Oaklander about his itch. Perhaps he misinformed Dr. Oaklander that the fibers in Morgellons were not real and were merely environmental debris. Dr. Oaklander, an eminent neurologist, gave Mr. Storr good advice and showed compassion for suffering patients. Storr generalized from his psychogenic itch and hypothesized that that the itch he experienced was the same as that of people with Morgellons. Not so. Mr. Storr was healthy. People with Morgellons suffer greatly with a real illness.

Now for the really offensive part: his attack on patients in general and a few in particular. Mr. Storr believed that Morgellons patients had a psychiatric disorder, or more than one, in large measure because he missed the part about the fibers being real–subcutaneous, unique and extremely painful, although many people told him that repeatedly. He then went on to rationalize that if the fibers were just common environmental debris, which they were not, that anyone claiming to be suffering from the fibers, and experiencing very real painful skin lesions caused by the emergence of the fibers from under the skin must be out of touch with reality. Wrong. They had a real disease and he did not. They had real fibers under their skin and real pain and yes, many did dig out the fibers to relieve the very real pain. They did not create their lesions, which in some cases, they could not reach.

Mr. Storr, an intruder into the lives of really ill and desperate people who were seeking help at a medical conference, in my opinion, decided that the patients were there for his amusement and morbid curiosity. He reported the most colorful comments of people seeking medical help, took them out of context and decided to report them as evidence to bolster his opinion that the patients were mentally unbalanced. He used language such as “alien”, “unworldly,” and other colorful but misleading language to describe patients, their reported fibers and experiences.

He was told by Dr. Savely that the patients were medically ill. Many were actually disabled. He kept pushing Dr. Savely to describe patient behaviors caused by the repeated refusal of previous doctors to examine the patients as “a little crazy.” When Dr. Savely responded with a descriptive behavioral observation, he twisted her observation into a specific psychiatric diagnosis which he offered for all Morgellons patients! As Dr. Oaklander correctly pointed out, “it is not up to some primary care physician to conclude that a patient has a major psychiatric disorder.” Even more to the point, it is not up to a reporter to diagnose patients with psychiatric disorders. Mr. Storr was unqualified and way out of line! In the U.S., vulnerable minorities including people with disabilities are not to be targeted for such stereotypical and negatively biased media attention. Neither are those with mental illness, but in this particular case, it was a false mental diagnosis by an unqualified member of the press. The people at the conference were medically ill, as stated by a clinician. If this is a typical example, British journalism is far behind in the ethics department. The article is a disgrace for the Guardian, in my opinion, all the way around.

People unjustly and inaccurately diagnosed with mental illness may lose their careers, as “Margot” pointed out because they are unfairly presented as capable of causing harm because they are unjustly accused of creating their own lesions. They can also lose custody of their children, and may not be allowed to serve on a jury of their peers. Dr. Smith, a physician for 35 years and a Fellow of the American Academy of Pediatrics, known for his honesty, compassion, courage, and generosity and who offered his support to other patients with his example of advocacy and self-agency at the conference, was especially targeted by Mr. Storr. Dr. Smith made a medical political statement that what many establishment doctors have been doing in not examining patients before diagnosing them was morally and ethically wrong. Mr. Storr, who knows nothing about medical politics, interpreted Dr. Smith’s statement as a political political statement. The audience enthusiastically agreed with Dr. Smith because many had first-hand experience of harm from not being examined before diagnosis, and from being labeled as delusional because they asked to be examined. Also, as Dr. Smith has pointed out, if someone has a psychiatric illness, that does not preclude a physical illness. A person can have both. The point is that the patient has to be systematically examined before a diagnosis is made. Mr. Storr, ignorant of these issues and of the context, decided that Dr. Smith, a sufferer of Morgellons, was, in his opinion, psychiatrically ill and had created his own lesions. The reporter knew more than a trained physician known for his medically precise descriptions, honesty and courage? I think not.

There is another fact about Morgellons that Mr. Storr does not get. The fibers do not just invade the area of skin. Too late for Mr. Storr to ask Dr. Smith about his knowledge about where else in the body the fibers might be found. Not that he would have believed the doctor anyway. In my opinion, Dr. Smith may possibly have had his reputation damaged by a sensation seeking, incompetent writer who did not know how to listen and learn at a medical conference. The organizers hoped, in vain, that since this was an international conference, that interest expressed by international press provided potential that international coverage would be a positive thing. Storr misreported the facts, repeated harmful stereotypes, made the most ridiculous assumptions based on his vivid imagination, and used patients for his amusement and offered them to the public for ridicule. Storr’s assumptions based on Dr. Savely statement about different patients needing different treatments is not evidence of a psychiatric disorder. Had he asked, Dr. Savely would have reported that individual patients need different treatments at different times because of the adaptability of whatever is causing the illness, as well as other patient factors including state of the immune system and how long they have had the disease. She bases her treatments on laboratory findings and whether or not patients improve on particular treatments.

I wonder about Paul, the Morgellons patient who disclosed suicidal ideation if he could not obtain appropriate diagnosis and treatment. Mr. Storr made it much harder for Paul to get help. Should a journalist be held responsible for his failure to get the facts right, and the harm that may come to those unfairly portrayed and other similarly seeking help whose access to help has been diminished by inaccurate reporting?

Mr. Storr stated that the “mass hysteria” as he put it was spread through the internet. Paul had the symptoms first and was misdiagnosed by doctors who did not examine him. Then he looked for help on the internet, just like thousands of others looking for information about symptoms they already had. So please explain how the internet caused the already existing symptoms. Thanks to a writer who mangled the science and targeted patients, any journalist wanting to attend the CEHF’s scientific medical conference in the future will be vetted with extreme care. What a golden opportunity trashed and stomped upon by a curiosity seeker uninterested in the factual material he claimed he was interested in!

Interesting question he reported from one patient: “Who would you sue?” Maybe, someone who misrepresents the organization, the conference, the illness, the evidence and the patients to the entire world? “Mass Hysteria,” “Delusions,” “OCD”, “self-inflicted lesions,” indeed! Did the sensationalist writer care anything about the evidence or diagnostic criteria or did he just like to target powerless suffering people who were desperately seeking help? As I see it, he generalized from his own “hysteria” to “mass hysteria,” because he did not learn what was presented at the conference about a real disease.