You've got to be careful when you read about medical research. Some of the reporting is sloppy, and sometimes it's misleading. Sometimes, I think it's even intentionally misleading.
I just read on a health-focused website - and a fairly trusted one - about a new study I'd somehow missed. The headline stated that exercise and talk therapy may help fibromyalgia pain. I keep a close eye on research, so I wasn't sure how I'd missed this one. The article didn't provide a link to the source, so I went looking. I couldn't find it on PubMed, which is the U.S. government's archive of medical journal citations. Odd.
So I went back to the article and found a mention of the journal in which it was published. On that journal's website, I found the title of the study: Cognitive Behavior Therapy, Exercise, or Both for Treating Chronic Widespread Pain. Hmm, it's not a fibromyalgia study after all. No wonder my search was unsuccessful! I wondered - did the researchers even look at fibromyalgia?
The abstract didn't mention fibromyalgia at all. I don't have access to that journal and couldn't find a free source for the full paper, but it concerned me that the article made it look like this was a fibromyalgia study and that didn't appear to be the case.
The first time, I'd just skimmed the article (as most Internet readers do,) so I went back and read it very carefully. The lead sentence says that those treatments may reduce chronic pain, then it talks about fibromyalgia pain and how the 3 medications prescribed for it are often inadequate for all the symptoms. It's not until the 4th paragraph that the article said the study was on people with chronic widespread pain, "some of whom had fibromyalgia." It doesn't say how many, and when it discusses results, it doesn't specify whether they're for the 450 participants or the smaller number with fibromyalgia.
Technically, the article provides factual information. However, the way it's written leads the reader to believe the focus of the study was fibromyalgia, which it was not. People who do this for a living know full well that the headline and first bits of information stick much better than what's written farther down and that people are more likely to skim through the middle.
I also take issue with the article's use of the phrase "talk therapy." The type of therapy used in the study was cognitive behavioral therapy (CBT.) While CBT is a form of talk therapy, it's different from what most people think of, which is the "my childhood was hard" type. Instead, CBT focuses on changing negative thought patterns (which we discussed here recently) and making beneficial lifestyle changes. The article only uses the proper name of the therapy only once, in a quote.
The net effect is that people are going to come away with the impression that standard talk therapy can help fibromyalgia pain, which reinforces the misconception that it's a psychological illness.
Why would a major website write something in this manner? This is just my opinion, but I think they do it because putting "fibromyalgia" in a headline gets you more readers than "pain" or "chronic widespread pain." And that particular site makes a habit of this kind of thing. I regularly see it put out articles with a fibromyalgia headline, only to read it and find it contains no further mention of fibromyalgia and the information pertains to muscle pain or arthritis. These articles have praised the benefits of treatments such as deep-tissue massage - something that could actually worsen our illness both short- and long-term. (There's a discussion of why here.)
Please, as you're trying to learn about your health online, read carefully. Check for original sources, such as links to abstracts, which are almost always available online. Make sure the information really is about your illness and not just recycled blather on regular old pain (which isn't at all the same as fibromyalgia pain!) And when you do find things that are misleading or inaccurate, bring it to the site's attention through email. Comments aren't the best way to do it for several reasons: some sites don't allow comments, some won't publish negative ones, and you never know who's looking at comments - it may only be the article's author, it may be no one. A complaint email has a better chance of being read, especially by someone who matters.
I'm not saying we should nit-pick every site to death, but when we see blatantly bad reporting, we need to point it out. Everyone makes a mistake now and then (believe me, I know!) However, the pattern of irresponsible and ethical reporting I see from that particular site is worthy of angry emails. (I've chosen not to name the site here for legal reasons. Believe me, I wish I was more comfortable slamming them openly!)
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I wonder, sometimes, about the hidden agendas behind websites. Even if the site does not have some specific fibro cure to sell, the choice of reporting style can reflect what the site manager believes should work for fibro. That belief may be informed by legitimate research, or by the person’s own experience with their disease, or just by plain old opinion.
This was a good catch on your part, and your article is well taken. I wish you felt like you could name the website, though, so I don’t put too much trust in it (if I ever read it.)
Thanks, Adrienne. I’ll be sharing this around.
So I typed in “exercise talk therapy fibromyalgia” in google and came up with: http://www.webmd.com/fibromyalgia/news/20120112/exercise-talk-therapy-by-phone-may-help-relieve-fibromyalgia-pain
I’ve heard some really negative things about WebMD from doctors and nurses I’ve talked to. But nothing substitutes for doing your own homework.
Yes, this study is looking at Fibromyalgia. In the criteria for inclusion, the participants had to meet the ACR criteria for Fibromyalgia whether formally diagnosed and treated or not. One of the points of the study is to see if PCPs can become the first line of treatment for those with Fibromyalgia.
ILLUMINATI…THEY EVEN PUT QUACKS IN PHYCOLOGY TO DOWNPLAY AN ILLNESS…ANYTIME A RESEARCHER GETS CLOSE TO THE TRUTH THEY DO EVERYTHING TO DISCREDIT THE RESEARCHER OR SHUT THEM DOWN…EXACTLY WHAT’S GOING ON AT HAWAII ON CIGUATARA AND THEY ATTEMPTED TO DO SAME TO NICOLSON’S BUT GARTH PRETTY WELL TOLD THEM WHERE TO GO AND HE TO THIS DAY SPEAKS THE TRUTH…
Thank you, Adrienne, for your careful reading of the literature out there and for reminding us that we need to remain alert also while reading material available on the Internet. You provide a valuable service to us!
I am starting to question a lot of the articles I am reading on fibro. Maybe they are valid and have been done in a professional manner but the synopsis’s I am reading leave a lot of them in doubt. It seems to me a lot of times researchers are going into the whole thing with a strong bias and are trying to prove something. They treat theories as proven fact and give just enough information to prove their point. ex. Exercise helps fibromyalgia. Supposed hypothesis: More people in the study will feel better after they exercise for 3 weeks. Result. More people in the study said they felt better after exercising for three weeks. I want to know how bad they felt to begin with, how many people joined the study, how many dropped out and especially why, how much better they people reporting they felt better felt and when they reported it and how did the people that did not feel. I also would like to know if they kept with the program and an update on how they feel at a period in the future.