Science and medicine reporting is hard. In this space we’ve dealt with some of the problems that arise when “generalist” reporters try to “do” science and medicine. And now, CNN has shut down its science unit. Given the increasing complexity of medical and scientific knowledge, this is very bad news.
As a fine example of poor medical reporting, let’s look at a local business magazine. The article, called “The Fatigue Factor”, is about fibromyalgia, and manages to get it wrong from the very beginning.
Some medical reporting is destined to be bad simply because the topic is too complex for a generalist reporter. But sometimes, a reporter succumbs to journalistic sloth. In this story, for instance, if the reporter had spoken to a recognized local expert rather than a self-proclaimed expert, she would have written a much different article.
Let’s start with the headline:
A relatively new muscle malady, fibromyalgia is no figment of the imagination
This is a forgivable mistake. Fibromyalgia is not a “muscle malady”. It is a syndrome of musculoskeletal pain not associated with any tissue pathology or laboratory abnormalities. When physicians hear “muscle disease” the assume there is muscle pathology that can be measured by EMG or seen under a microscope. This is not the case with fibromyalgia.
But let’s move on to the body of the article. A good health reporter gives a patient anecdote to put a human face on the story, and this reporter does just that:
L. M., a 36-year-old therapist from S., believes she may have been suffering from some form of fibromyalgia most of her life. “I was tested for mono many times, my legs ached, and I couldn’t get answers why,” she says. M. was finally diagnosed in 1999, after having physical therapy for sciatica. There were also terrible headaches, thyroid problems, severe menstrual cycles, carpal tunnel syndrome, irritable-bowel syndrome, insomnia, and aches and pains all throughout her body. She was extremely sensitive to varying temperatures, as well. (identity redaction mine. –ed.)
From this report, it’s not at all clear what the patient is suffering from. Fibromyalgia may be on the list, but fibromyalgia is a diagnosis of exclusion, meaning you much rule out any other cause for symptoms before invoking this vague syndrome. And what are the symptoms of fibromyalgia?
Widespread muscle pain, fatigue, and multiple tender points. That’s it. That can of course apply to many conditions, but many physicians will invoke fibromyalgia when all other diagnoses have been ruled out and the discomfort persists. Others may simply toss the diagnosis out somewhat indiscriminately.
As we’ve learned, vague syndromes without clear pathologic explanations are favorite targets of quacks. Fibromyalgia has always been a controversial diagnosis, not least because there is no clear way to be sure it exists. The patients we label with fibromyalgia probably constitute a range of different patients with different pathologies. Some consider it a “trash can diagnosis”, meaning that when you run out of diagnostic ideas, the patient gets thrown in a bin with other patients who have similarly stumped their doctors.
This is a very complicated issue. If I were a reporter, I’d probably call a few local experts. Or, if your on a deadline, you could just google it. If you search for “fibromyalgia michigan” the first hit just happens to be the doctor she interviewed. Strong work.
What kind of insights did her google doctor provide?
…new research has helped people recognize fibromyalgia as a disease. “The development of two new drugs, Cymbalta and Lyrica, has validated [for] many doctors that it is a real disorder, not just a trashcan disorder,” says Dr. G.W.
This is a fascinating comment on the epistemology (or is it ontology?) of disease, but I have a feeling he wasn’t talking about that. There are instances where medications have helped us make diagnoses, but this is not one of them. In fact, the licensing of duloxetine and pregabalin for fibromyalgia was likely much more a business than medical decision. Duloxetine is an anti-depressant like many others, and with many anti-depressants being available for $4.00 per month, duloxetine has to find a way to justify its much higher price. Similarly, pregabalin has a closely related cousin, gabapentin, which is much cheaper. Duloxetine acts as an antidepressant and pregabalin can act as a mood-stabilizer—this does not immediately lead me to conclude fibromyalgia is a “real disorder”; it may or may not be, but this data would lead me to think that the companies identified a subset of people with mood disorders associated with somatic symptoms.
I never really meant to step into the mire of the fibromyalgia debate, so let me return to the bad reporting.
Typically, fibromyalgia patients experience severe aches and pain in the muscles, tendons, and joints, especially along the spine. In turn, specific areas of the body — often called trigger points — can be extremely tender to the touch.
This is a much better characterization of the syndrome, but her next bit is horrid:
Additionally, sleep disturbances, notably insomnia, are often associated with the pain, as well as headaches, fatigue, chest pain, morning stiffness, anxiety, depression, irritable-bowel syndrome, and cognitive memory impairment known as a “fibro fog.” Hormonal imbalances, which cause women to experience painful menstrual cramps, skin problems, and infertility, are also common. Patients can also suffer from other overlapping health conditions, such as chronic-fatigue syndrome, temporomandibular joint syndrome, restless-leg syndrome, myofascial pain syndrome, and multiple-chemical sensitivity. In other words, they’re a mess.
As soon as you start mentioning a garbage can full of associated diagnoses, you’ve wandered off the beaten path. Remember, your symptoms should not be attributable to other diseases if you want to call it “fibromyalgia”. TMJ and RLS are distinct diagnoses. Myofascial pain syndrome is a synonym for fibromyalgia. Chronic fatigue and multiple chemical sensitivity are generally considered “fake diseases”—CFS exists, but is horribly over-diagnosed. MCS probably doesn’t exist at all.
E.s’ doctor discovered she had a virus called Epstein-Barr, which causes mononucleosis and chronic-fatigue syndrome, in addition to fibromyalgia.
We have both a fact problem and an “eats shoots and leaves” problem here. First, EBV does not cause CFS, but can cause mono. Second, it’s not clear if she is saying that EBV causes fibromyalgia, or that the patient has EBV as well as fibromyalgia. Either way, the diagnosis is ridiculous. EBV antibodies can be detected in a huge percentage of the population, but very few people are ever made noticeably ill by it.
Dr. W. has all kinds of interesting ideas:
We have learned that the basis of fibromyalgia and chronic fatigue has a lot to do with one’s hormonal and nutritional status, in addition to the underlying infection and [a] weak immune system.” W. adds that whether from illness or aging, there is a breakdown on the cellular level whereby cells do not receive the proper nutrition.
We don’t even know if fibromyalgia exists, much less if it has to do with a “weak immune system”, hormones, or nutrition.
But it really gets fun next:
Dr. Edward Lichten, a Birmingham obstetrician/gynecologist, has spent years studying patterns in medicine, which he writes about in his book Textbook of Bio-Identical Hormones. He and Wazni see eye to eye. “Because all of their energy systems are off,” Lichten says, “these patients do not absorb the minerals, proteins, and fats you need to repair, restore, and have an active life. There’s a cycle causing more inflammation and more cellular degeneration.”
If the author of a book on “bioidentical hormones” (sic) sees “eye to eye” with me, I know I’m in trouble.
The reporter goes on to write about more of Dr. W.’s revelations about fibromyalgia, none of which are based on any real understanding of modern medicine. For example:
With the virus under control, Helen’s doctor began rebuilding and repairing her muscles by addressing her micronutrient deficiency through intravenous feeds. “If you have a body that doesn’t absorb nutrients, like I did, no matter what I ate, it wasn’t absorbing and I had no energy,” she says. “Now I feel like a new person.”
This refutation of science-based medicine doesn’t make Dr. W. that different from other practitioners of cult medicine, but I feel kinda bad for this reporter. She googled her topic, and when she needed a second source, she drank from the same cup of Kool-Aid.
And this is a problem faced by anyone trying to research a medical condition without a background in science or medicine. If you innocently (or credulously) google an unusual condition, you will often get unusual hits. If you simply follow the links from one source to another, you’ll get a very biased picture. If I were a journalism professor (and let’s all say a brief prayer of thanks that I’m not), I’d fail the reporter, and make her retake the class.
But this isn’t a student, it’s a writer for a local business magazine. If you’ve been following the news at all, you know that Detroit isn’t exactly rolling in dough; I’m guessing that the mag isn’t about to hire a dedicated health reporter. What can we do to help out journalists? Perhaps journalists would be interested in small workshops about researching and understanding health issues. Or maybe not. Maybe it’s just easier to get that degree from Google U. and get to work.