Tuesday, March 08, 2005

medical research confirming what we already know...

... while serious questions go unanswered, or important research never sees the light of day. What can we do?

This article, A happy marriage can help mend physical wounds, is cool, but also kind of, "ya think?!?" It only makes sense, at least to me, anyways. The human body is just one huge set of interconnected systems, and everything affects everything else. It makes sense to me that environmental stresses, especially a bad relationship with your spouse, would have a measurable impact.

"You're making me sick" is something that can literally be true, and now we have the research to back us up when we resort to using that kind of hyperbole. But is having a free pass to toss that time-worn phrase during an argument enough justification for an entire research study?

As these "happy marriage" research results are coming right on the heels of the dying of a broken heart research, it seems that some medical researchers are spending a lot of effort to prove things that most rational people take for granted as being true. Why?

Does it help to quantify these things? Will producing a measurable result enable better patient care, or preventive therapy? People in bad marriages already know that being in a bad marriage sucks, do they need to be told that they're suppressing their immune systems and inhibiting the formation of healing proteins, too? Will this new news (gasp!) provide sufficient motivation for people to stop being obnoxious to their spouses? I don't think so.

The "dying of a broken heart" research is even more incomprehensible to me. Most everyone understands the concept of "will to live." This is something that you have to have to survive. If your will to live evaporates, sooner rather than later, you'll die.

I am intimately aquainted with this idea, as for the first eight weeks of my daughter's life, it was neither here nor there to her if she lived or died. She was a pleasant, happy baby who loved snuggling. But she took zero interest in feeding herself, and would take upwards of 45 minutes to drink an ounce and a half of expressed milk from a bottle; nursing just exhausted her.

There was nothing physically wrong with her, she just wasn't sure what she wanted to do. Around about 2 months she decided to stay. The only reason she was around at 2 months to make that decision was because we had made heroic interventions on her behalf, coaxing her to eat every 2 hours, and patiently loving her until she developed the will and the strength to live.

We didn't need any research backing up our decision to take these extra measures, and we don't need a study telling us that people who have sustained a major loss can die of a broken heart. They don't have to die, the study said. If intervention was made in time, a complete recovery could be made. Do we really need to be told that some people have a hard time recovering from a loss, and won't, unless they get help? Isn't that obvious?

I'm on a tear on this subject right now because of a discussion over in the Yahoo ThyCa support group. A research paper published this February says that use of sour candies in the first 24 hours after RAI ingestion actually increases the exposure of the glands to radiation -- in other words, does more harm than good. This research has spent 2 years in the publication pipeline, and I understand the business of peer review, and juried articles taking time. I also understand that sometimes journals have more stuff than they can publish, so 2 years to a publication date is not all that unheard of.

What irritates me is that this study demolishes the standard course of treatment after RAI, and no one knows about it, and a lot of people (including me) are having negative consequences because we followed a protocol that we didn't know had already been proven harmful.

Yeah, yeah, the nuclear medicine doctors are different from the doctors who did the happy-marriages-heal study who are different again from the dying-of-a-broken-heart researchers. It just seems to me that there are a lot of legitimate medical questions that go unanswered, when all this fluff science is being touted in the media. So, being in a happy marriage can help you heal faster. Great! Yes, it's possible to die of a broken heart. OK. So what? How does this research benefit anyone other than the researchers? Isn't there something better they could be doing with their time?

I'm not advocating changing anything in how medical research is conducted -- more power to the doctors and researchers to decide their topics, get their funding, and write the papers. The Lord knows it's not something I could do, and I value them for their amazing work. This area is covered by the First Amendment, as far as I'm concerned -- up to a point; we trust our researchers have ethics. I'm just frustrated by the stuff that I see getting lots of air time, while the research that can actually help improve the quality of people's treatments and their subsequent lives never even makes a blip on the media radar. (Maybe the problem is with the media, and not the researchers? -- Partly, yeah, but that's a whole 'nother topic.)

What is to be done? If you want to know what's up within a specialty, you have to go look it up yourself. Fortunately I have the ability and resources to do that, but the average non-medical person does not. What about the average doctor? I'm always telling my doctors about new research I've read that may be relevant to my treatment. My doctors are still my doctors because they listen to me when I do that. I am not a doctor but it stands to reason that I have a lot more time to spend researching my condition than does a doctor who is treating dozens of patients. A good doctor will keep an open mind and won't be bothered by being handed a sheaf of abstracts.

There are countless online support forums where people can keep track of new developments, and help push the word out into the real world, where medicine is practiced, not just written about. These can be a mixed blessing, and you have to know that going in. Forums are populated by the hard cases, so it's dangerous to form an opinion about a condition based solely on what you see and learn in a forum. That said, online forums are often the best place to find out about new research, because most successful forums have one or two gatekeepers who keep an eye on the journals and post about anything relevant. Forum archives are a great resource, too, for searching on a particular set of symptoms, for example. You can bet that, no matter what you're going through, someone else has been through it already. The question is, will their experiences help you? It's a given that they can't unless you (and your doctor) know about them.

Hat tips: Thanks to Dr. Charles for the link to "happy marriages" article. I saw more than one link to the "dying of a broken heart" research, and I can't remember where... it was a month ago, sorry! Thanks to Dr Kenneth B. Ain for posting about the sour candy/RAI research over on the Yahoo! Groups Thyca Message board.

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