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| Patients risk being caught in the net of web hype |
15-Nov-2006 |
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EDITORIAL by
Brad McLean
,
Australian Doctor
medical news editor
.
IN the BBC public relations satire Absolute Power there is a disturbing tale about the influence of the Internet. Caught on camera having assaulted his pregnant wife in an Ikea car park, a well-known comedian is forced to consult the spin doctors at the fictional firm Prentiss McCabe to ‘PR’ his way out of the press fallout.
The Machiavellian svengalis at the firm hatch a cunning plan. They simply create a disease that features, among other things, violent outbursts but which rapidly responds to treatment. The PR firm launches a web site to provide evidence of the ‘new’ disease. The comedian confesses on national television to having the disease, assures the world he can make a full recovery, his wife stands by him and all is forgiven. Spin spun.
The interesting part of the story is that when the disease web site is launched — before the comedian goes public — it is immediately inundated with visitors convinced they have the condition. Only the stuff of fantasy you might say? Well, not quite.
In what you could call a case of life imitating art is Morgellons disease, which is sweeping the US.
Mary Leitao, a southern Californian woman, brought Morgellons disease to public attention: her son Drew had it for years without doctors being able to explain his bizarre symptoms.
Armed with a background in biology, Ms Leitao began her own research into her son’s condition — which included skin lesions, strange fibres growing out of the lesions and a crawling sensation on his body.
Her research yielded an obscure 17th-century French medical text that described a cluster of symptoms so like her son’s it was uncanny. So Mary named the disease after the text’s author and launched a web site.
Fast-forward five years and the Morgellons Foundation web site has thousands of registered patients and is inundated with inquiries from around the world each day — a Google search for the condition nets you more than 200,000 results — and thanks to the unprecedented power and reach of the net the legion of cases continues to grow.
Trouble is there is absolutely no evidence or research to back up the disease as a real entity. The only published report appeared in the American Journal of Clinical Dermatology this year — an opinion piece from the founders of the Morgellons Foundation, including Ms Leitao. No conflict of interest was declared.
But could the disease possibly be real? A visit to the web site gives you a feel for just how broad its symptoms are. They include fatigue, cognitive difficulties, behavioural effects and much more, including “brain fog”.
Half of the cases also experience fibromyalgia, sleep disturbance, hair loss, neurological disorders and disintegration of their teeth. Few, as you can imagine, can continue to work because they cannot “function optimally”.
And then there are the fibres. ‘Clinicians’ report seeing blue, green, red and black ones that fluoresce when viewed under ultraviolet light. However, according to media reports, critics analysing the samples generally identify plant material or lint (correlating with cardigan colour, one suspects).
The site also explains that many patients have or will be diagnosed with ADHD, bipolar disorder or obsessive compulsive disorder, or have been labelled as having “delusional parasitosis”.
In a New York Times article published in October, psychiatrist Dr Mary Seeman said the Internet had a powerful role to play in bolstering shared delusions and while the net was an excellent support tool we have yet to fully realise its power to perpetuate such thinking.
“When a person has something bothering him these days the first thing he does is to go online,” she told the newspaper. “You can get reinforcement of your ideas very quickly there.”
You have to feel sympathy for GPs left to deal with the fallout.
The Morgellons story, and no doubt many others like it, speaks volumes about the need for medical information to be, at the very least, moderated or vetted in cyberspace. Net nanny programs exist to protect children from the dangers of pornography, but what measures are in place to protect vulnerable, even deluded individuals from health information?
Thankfully, in the US, the Centers For Disease Control announced in June that it was putting together a 12-person panel, including pathologists, toxicologists, infectious diseases specialists, ethicists and mental health physicians, to develop a case definition for Morgellons should the disease be real.Its response is hotly awaited.
Meanwhile, high-profile international media stories help keep the pot boiling and US television is lapping up the disease. Even medical drama ER made mention of the condition and the ‘fibres’.
Let’s hope some sense prevails before we end up with Morgellons golf tournaments and a celebrity dancing competition for the Morgellons Foundation on prime time TV. Stay tuned.
Mr McLean is
Australian Doctor
’
s medical news editor.
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