The 'fibromyalgia wars' rage on Toronto Star May 13 2010

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The 'fibromyalgia wars' rage on
Judy Gerstel

[if/sb: This looks like a fairly balanced article after my cursory glance. If that's true, she might be a good person to approach re getting ME/CFS coverage. Anyone know her or have media contacts?]

It's not just patients who are fighting fibromyalgia (FM). It's a
battlefield for physicians and academics, too.

'The Fibromyalgia Wars,' an article by Kansas rheumatologist Fred
Wolfe, was published a year ago in the prestigious international
Journal of Rheumatology, a Toronto-based publication edited by
Duncan Gordon, clinician at Toronto Western and University of
Toronto professor of medicine.

'FM is a bitterly controversial condition,' writes Wolfe. 'It pits
patients, pharmaceutical companies, some specialty physicians,
professional organizations, and governmental agencies - groups with
substantial political and economic power who benefit from the
acceptance of FM - against the large majority of physicians,
sociologists, and medical historians in what we call the
'fibromyalgia wars.' The wars are fought over a series of questions
that concern the legitimacy of the diagnosis.'

The condition that came to be known as fibromyalgia almost 25 years
ago has had a long and controversial history. In the past, because
it affects mostly women, it was considered a variant of hysteria,
a catch-all term used widely by what was then the male medical
establishment.

It was likely FM that one-time U.S. Surgeon-General William Hammond
was describing in 1886 when he made the following observation,
suggests Gerald Weissmann, editor of the FASEB Journal of The
Federation of American Societies for Experimental Biology: 'Spinal
Irritation is characterized by multiple tender spots distributed
over the female body, probably caused by sexual excess...'

For much of the 20th century, the 'clinical entity causing chronic
and disabling pain' - as it's described in a U.S. National Institute
of Health publication - was referred to as 'fibrositis.' People have
also referred to the disorder in the past as 'rheumatism' and it's
been lumped together with chronic fatigue syndrome.

While there's finally agreement on what to call it, not everyone in
the 21st century agrees that it exists as a 'real' illness, focusing
instead on the psychosocial aspect of it. Naysayers, writing in the
Journal of Rheumatology, have called FM 'the medicalization of
misery' and declared that 'pain is real, fibromyalgia isn't.'

University of North Carolina professor and rheumatologist Nortin
Handler has called FM 'a social construction' and suggests that it's
a case of how 'a person with widespread chronic pain... chooses to be
a patient with widespread chronic pain.'

There's no doubt, says Toronto rheumatologist and journal editor
Gordon that people with FM 'are dealing with chronic pain. No one
can deny that.' But, he says, 'Many factors are at work in its
causation, having to do with things like level of education,
psychological stress, divorce, previous trauma like auto accidents,
social and cultural factors, a host of things in the background.
It also has to do with attitude. That's where behavioral modification
comes in: changing patients' attitudes and mind so they can
de-emphasize (the pain) and get on with their lives.'

Gordon remains somewhat neutral in the 'fibromyalgia wars,'
acknowledging both the credibility of the diagnosis and disorder but
also acknowledging the importance of underlying social, cultural and
attitudinal factors. As far as cause and effect, he suggests, 'It's
a case of the chicken-and-the-egg.'

Steadfastly and outspokenly critical of the naysayers, is Dan Clauw,
professor of rheumatology and psychiatry at the University of
Michigan and director of its Chronic Pain and Fatigue Research Center.
'I don't think the controversy will ever go away,' he says. ''The
wars' are largely among older physicians who developed their beliefs
about fibromyalgia early in life. They haven't changed their views
over 20 years in spite of a tremendous amount of data negating many
of their arguments. And most naysayers are old males and that's
probably not accidental. I do think there is a gender bias.'

He says they're not looking at or acknowledging the data which reveals
'a strong biological underpinning' including, he notes, 'brain imaging
studies showing objective abnormalities' and 'increased sensitivity to
pain.' And yet, as with other chronic disorders, there are social and
cognitive factors, he says. 'The key symptom seems to be multifocal
pain,' he explains, 'plus the presence of other somatic symptoms,
fatigue, insomnia and memory problems. Other interrelated symptoms are
irritable bowel syndrome and tension headaches.'

Clauw says the marketing of such drugs for fibromyalgia such as Lyrica,
and the physician education that accompanies the new drugs, have given
more legitimacy to the diagnosis. Before, he says, 'Only about 50 per
cent of physicians in the U.S., when asked, 'Do you believe there is
such a thing as fibromyalgia?' would answer, 'Yes.' Now, it's around
85 per cent.'

The FM drugs have also provided physicians with an efficient way to help
patients.

'Rhuematologists are good at diagnosing fibromyalgia,' says Clauw, 'but
many don't like to treat it because it takes more time.'
And for investigators, says Toronto rheumatologist Gordon, 'it's a
challenge. But what is real is the pain for persons who have it and
doctors should be interested at least in making the diagnosis and
reassuring patients.'

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