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Diseases That Get No Respect Show

Thursday 9 June 2011

From Canada's CBC Radio blog, Dr. Brian's Side of the Gurney, about an episode of its radio program White Coat, Black Art which is hosted by Dr. Brian Goldman:


Dr. Brian Goldman
White Coat, Black Art host Dr. Brian Goldman.

Diseases That Get No Respect Show

Dr. Brian Goldman

When it comes to patients, people like me are trained to respect them all. As for the diseases patients carry, that's a very different story. This week on White Coat, Black Art: diseases that get little respect inside the hospital's sliding doors. I speak with a Vancouver woman whose medical condition has generated everything from skepticism to outright disbelief from many of the doctors who've treated her. And, a medical historian explains why some diseases get a lot of respect while others don't, and whether marketing can change that.

Tune in Saturday at 11 am (11:30 am NT) and again on Monday at 11:30 am (3:30 pm NT) on CBC Radio One. Or, click below to listen to the show right now, or download the podcast:



In medical circles, there are diseases that command respect among physicians. Multiple sclerosis, rheumatoid arthritis and strokes are three such examples. These and many others have two things in common. First, they are serious conditions in that they are either life threatening or cause serious disability. Second, they can be confirmed objectively through blood work, CT scans, MRIs, and other forms of testing.

Cancer may well top the list. Even so, some forms of cancer get more respect than others. As reported by CBC News, in terms of fundraising and research dollars, we tend to respect breast, prostate, childhood cancers and leukemias far more than lung, colorectal and stomach cancers. That's surprising since it's the latter three types of cancer that are among the most common and most deadly.

Then again, there's a category of medical conditions you'd swear people like me are trained or acculturated to disrespect if not view with outright contempt - no matter how much that makes you suffer.

Comedian Rodney Dangerfield made a successful stand-up career out of getting no respect. It's fair to say the Rodney Dangerfield of diseases is one called Fibromyalgia (FM). It's a condition that causes pain, stiffness, fatigue, poor sleep, plus trouble thinking and concentrating. According to a recent review article, roughly five percent of the population has FM, with the highest prevalence occurring in middle-aged women.

Researchers are zeroing in on the cause of FM. It is now seen as a biological neurosensory disorder characterized in part by abnormal processing of pain signals in the central nervous system. Along with a new understanding of the biological basis of FM have come new drug treatments to relieve the symptoms. Not only that, in 1990, the American College of Rheumatology published guidelines on how to make the diagnosis.

Still, it's hard to find a disease with less respect among people like me. None of this is news to Susan MacLean, a patient with FM and President of Myalgic Encephalomyelitis and Fibromyalgia Society of BC (MEFM) who began by battling the disease and ended up battling many of the doctors who treated her.

"I've had a number of very negative reactions from doctors," MacLean told WCBA. "I'd like to describe my experience when I actually received the diagnosis of FM.

"I was seeing a doctor for a number of months before a referral to a specialist was actually made. The reaction of the rheumatologist was that this was an illness of high-strung, uptight middle age women, that I should buy new shoes to alleviate the excruciating pain in my feet and legs.

"They did a very cursory physical examination, handed me a brochure, told me not to seek out any support for the illness from any of the local support groups in town, because that was simply a bunch of people sitting around, holding hands feeling sorry for themselves.

"I was patted on the back, escorted out of the office, and was told that they hoped they never saw me again," recalls MacLean.

If Susan MacLean's current physician is helpful, that's the exception and not the rule. More often than not, I hear patients say their doctors fail to even recognize they have a disease.

Dr. Jacalyn Duffin a haematologist and medical historian at Queen's University in Kingston, says FM is only the latest in a long line of diseases that are greeted with contempt by members of the medical profession.

"You can take back a long, long way to the 19th Century," Dr. Duffin told WCBA. "There were people who experienced accidents when railways came along. The trains were going faster than other vehicles had ever gone before. If there was a sudden stop or a jarring, then people would develop some kind of musculoskeletal injury, and there was actually a condition called 'railway spine'."

Other modern day illnesses that have been disrespected by physicians include chronic fatigue syndrome and - at least until recently - concussion.

Diseases that are dissed by physicians have several factors in common. The first is that they can't be confirmed with objective testing. When it comes to cancer, you can do a biopsy. You can diagnose a stroke with a CT or MRI scan of the brain. A heart attack can be detected with a blood test that measures troponin. By contrast, FM is diagnosed by asking about symptoms and by examining the patient for tender points on the body.

The most charitable explanation given my colleagues is that the symptoms of FM are non-specific and could apply to many other conditions. In addition, tender points can be elicited in people who haven't been diagnosed with FM.

But some MDs have a more sinister way of explaining away their reluctance to endorse a diagnosis of FM. Recently, I heard a colleague refer to a patient with FM as having "Faker-myalgia". What's worse, my colleague made this flippant comment to a resident who my colleague was mentoring.

"That's pretty depressing and I would think a poor modeling example for the student," says Dr. Duffin. "It's become interesting from a medical philosophical perspective. In the 18th-century, to be sick you had to feel sick. Nowadays, because of various technologies, to be sick, the doctor has to find something."

In other words, back then, all we physicians had to go on were your symptoms. Had FM been discovered in the 18th-century, it would have fit the definition of a disease to a 'T'. But not today.

Today, if a condition has a lot of symptoms but not a lot of objective proof, we doubt the condition is genuine.

"Not a real disease, or, it's all in your head, and therefore, it's a psychological disease," says medical historian Dr. Duffin. "And if a disease is caused by mental distress, then it's to be respected less."

Another reason why doctors disrespect FM is that they fear it. More specifically, they fear they'll have to stick their necks out endorsing a claim for long-term disability that many sufferers of FM request. There are two reasons for this. First, they worry that a colleague will write a report that flat-out contradicts the physician's endorsement of the claim of disability. Second, right or wrong, many of my colleagues nurse a suspicion that patients are constantly trying to bamboozle them into writing sick notes when they aren't particularly ill or disabled.

Hate to say it, but the third reason why FM and other similar diseases get little respect is the perception among many physicians that the people who suffer from such conditions tend to be difficult patients.

It's a charge that makes FM patient and MEFM President Susan MacLean bristle with anger. "I think that doctors are perceiving difficult patients when in fact they should be perceiving a difficult, complex illness," MacLean told WCBA. "Patients face a multitude of problems. "It's not just a chronic pain syndrome. There are other problems with the illness that cause great difficulty in the patient's life.

"Doctors have a tendency to see chaos when in fact they should be seeing complexity."

I'm struck by something medical historian Dr. Duffin said to me during our interview. With our boundless fascination for technological progress in medicine, the way doctors treat people with FM shows just how out of touch emotionally we are with our patients.

In my opinion, it's time MDs got back to the idea that our job is not just to treat diseases but also to help people who are suffering because of it. Expressions of disbelief - much less scorn - have no place in the consulting room. Objective proof is essential in measuring response to therapy. But it should never be used as a stick to beat patients whose only misfortune is to contract a disease that's difficult to verify.


The above, with comments, originally appeared here.


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