Misleading Coverage of Research on Fibromyalgia, ME/CFS

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Call me crazy, but I prefer to have my medical news non-sensationalized. Oh, and accurate as well.

Sadly, that's hard to come by, especially when dealing with conditions like fibromyalgia and chronic fatigue syndrome, when they can slap a headline on it like, "It's not all in your head!" and think they're original.

I bring this up because of a particular study that's made the rounds about three times now.

I don't know whether the organizations behind this research have put out multiple press releases or some news organizations were just slow to pick it up, but every time someone runs a new article, friends start posting it all over Facebook. I blogged about this study, because it's interesting and important - it's about excess nerves in our hands and feet. Here's what I don't like about many of the articles I've seen:

  • They have headlines like "fibromyalgia solved," or "mystery solved." Really? One discovery means a complex, multi-system illness is no longer a problem? It implies that suddenly we know everything about it, which is oh-so-far from the truth. In reality, this study is a small piece of the puzzle. It's a new direction for research, to be sure, and it could someday lead to new treatments or better diagnostics - but so could a lot of other studies, too.
  • They include some reference to "it's not all in your head," which is the same tired line we've heard for years. Sure, putting things like this in bold print all over the internet could make some people re-think their prejudices about fibromyalgia, but really, I believe all it's doing is spreading the word that not everyone thinks this is a valid, physiological condition.
  • They're inaccurate, treating "pathology" as "definitive cause." Granted, the word pathology can cover causal factors, but it also means the effects of illness. From the study, we get no indication that this particular physiological abnormality is the cause of fibromyalgia. It may well be the cause of certain symptoms, but that's not the same thing. Far from it, in fact. This kind of misrepresentation can give people like us unfounded optimism about treatments and cures. It can also lead to the public impression that fibromyalgia is no longer a big problem - scientists have it all figured out!

    How do I know these articles foster misunderstanding? I have plenty of proof on Facebook. Three times now with this one study, I've gotten a flurry of messages and posts to my wall about it. One person - a smart guy who knows a lot about health and medicine - sent me two articles on it, thinking they were different studies because they came across so differently. One friend posted it on his wall, saying, "This is great news for anyone that suffers from this condition," and "[P]roof that it is has a pathology and is not psychosomatic is hugely significant, and is a huge win for people who have been saying 'It's not in my head!' for years or decades." Obviously, he's a great guy who "gets" that this is real, and it makes me angry that the information has been over-sold to him. We have 15 years of research showing fibromyalgia isn't psychosomatic - this one study doesn't get all the credit!

    A big part of the problem is that journalists usually aren't well educated on medical reporting. That's not their fault.

    When I used to write medical stories for TV and newspaper, I didn't understand that a single scientific study tells us almost nothing until it's been corroborated by other studies. I wasn't familiar with the body of research behind the conditions I wrote about - how could I have been, when hundreds of studies on hundreds of diseases come out every month? I wouldn't have understood the medical terminology even if I had tried to learn more. On top of all that, I was on a tight deadline and had a few dozen other stories to write that day.

    So what's missing from most medical stories is context. All the reporter knows is what's in the press release, so when someone puts out a statement such as, "Some doctors say it's all in your head, but new research uncovers important new physiology that solves the fibromyalgia mystery," that's what gets reported. (That statement is my own example based on things I've seen, not pulled from a specific press release or article.)

    The take-away from this is: when you see an article about fibromyalgia, chronic fatigue syndrome, or other medical issues, be aware of these short-comings of the media. Learn what the research terms mean so you understand what the study really says. Don't see an overblown article and think some new discovery is going to change your life and make everything better. Certainly, any study that uncovers new information about what's going on in our bodies is a big deal, but honestly, few of them will single-handedly lead to tangible changes within the next decade. The changes you and I will see in the short term will come from work done years ago.

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