Inconsistency bothers me. When I’m interviewed, I answer that I wanted to build this website because there is so much “wrong” information about Rheumatoid Arthritis. Too many common generalizations are actually incorrect. Truth about RA can be hard to find. Maybe this is an explanation in part.
I read something amazing today on The Scientist: Evidence: A Seductive but Slippery Concept.
From the article: “Finally, even some of the strongest proponents of evidence-based medicine have become uneasy, as we have increasing evidence that drug companies have managed to manipulate data. In the heartland of evidence-based medicine—drug trials—the “evidence” may be unreliable and misleading. All this doesn’t mean that evidence-based medicine should be abandoned. It means, rather, that we must never forget the complex relationship between evidence and truth.”
From the podcast on the same page: Larry Green: “A general critique growing… on rules of evidence… health sciences, most particularly medicine, have tended to become, I dare say, obsessed with internal validity to the point that they have put a finer and finer point on the degrees of certainty that the intervention being tested could be said to be the sole cause of the health outcome … & that obsession has caused the research to become more and more tightly controlled to the point that we have lost most of the external validity, the ability to generalize from the research to other settings and other patients and populations and… Left us with a literature that is … increasingly irrelevant… to most of what practitioners and patients are asking for.” In reply, Peter Frishauf, Founder of Medscape: “We’re missing the forest because we are counting all the trees.” Richard Smith, former editor of British Medical Journal: “We need research that will inform what happens in the real world.” Larry: “Am I represented in those studies? …They end up with an unrepresentative sample.” Hear the full podcast on the Society for Participatory Medicine’s website.
Last week: 20 facts on RA I’ve learned from patients. Now: 3 RA truths?
- A 30 year old article in Arthritis and Rheumatism states that RA patients cannot be labeled with remission status if they have “clinical manifestations of active vasculitis, pericarditis, pleuritis or myositis, and unexplained recent weight loss or fever attributable to rheumatoid arthritis.” How many modern sites don’t even list those as related to RA? How many doctors don’t connect these secondary diagnoses with RA? I hear them every day from patients. Did medicine un-learn these facts? I didn’t hear them mentioned in the remission discussion at ACR. See the post and comments on RA fevers for an interesting comparison.
- It’s well documented that 30% of RA patients do not respond to treatment. A 20% improvement is called ACR20 and many treatments can claim over 60% of patients respond this well. Considering the up & down nature of most RA, I’ve always thought 2 joints better out of 10 was not so fabulous. Anyway, about 40 or 50% of patients get to an ACR50 level and far fewer reach ACR70. Personally, an ACR70 response would still leave my own life disrupted, so what exactly is an “adequate response”? Why does one well-respected RA researcher from NYU state that only “10% to 15% of patients still do not have an adequate response to treatment”? Why under-state the non-responders by 2-3 times? He is co-author on another article that quotes the 30% measure.
- Today, I did something I’ve never done before. I argued with medical personnel with regard to my own case. Once upon a time, a rheumatologist told me that CRP is the only measure of RA disease activity, a view becoming more prevalent. Today, a coordinator of a clinical trial told me that in order to qualify for a trial I would have to take all of my powerful CRP-suppressing prescriptions for at least 90 days and then have an abnormally high result. She stated that if the medications suppressed my CRP, then that is proof those treatments “are working” and I do “not need to be in a clinical trial.” I can hardly begin to say how many ways that’s wrong. Start with the fact that nearly half of RA patients have a normal CRP.
It seems like some are paying attention to neither the forest nor the trees.
- Rheumatoid Arthritis Fevers
- Comparison of Biologics for Rheumatoid Arthritis (RA)
- All I Want for Christmas Is My CRP
- 20 Rheumatoid Arthritis Patient Facts I learned from RA Patients