More Patients As Science Authors, Please
A chance encounter via Substack leads me to Wonder--what if lived experience could first author more?
The Frontier Psychiatrists, as a name for this newsletter, is deeply misleading. In part, I didn’t chose it. As I have mentioned many times, it was
, DFAACAP, FCTMASS’s cheeky idea to take an avalanches song and turn it into a brand name. Yes, she has all those letters after her name. Yes, I listen to her because she is often correct. However, I thought it was a terrible brand name. Here is one thing about a brand though—if you keep hammering on it, you can make it more than it might have been when you thought it up. The Frontier Psychiatrists newsletter isn’t just about psychiatrists. I happen to be a psychiatrist. I am the editor of the newsletter. One of the more exciting thing, about this role, as a journalist and editor-in-chief, is that I can feature whoever I want, as long as it’s in keeping with the brand of the newsletter. Heavy on the frontier, light on the psychiatrist-ing. I have featured people with lived experience like . I have featured other non-psychiatrist writers like . I have collaborated with some actual psychiatrists like . I am excited to have a platform that can elevate the variety of voices we will need to hear so that we can get, alive, to the other side of our problems —whatever than may be!
I’m into it. One of the more surprising stories, which I’m telling today, has to do with a connection with a British scientist and writer. He goes by the nome de plume
.He’s not a physician. He’s not a biomedical scientist. He’s a physicist. He does, however, have bipolar disorder. Lithium was a fabulous treatment for him. He read some of what I wrote about it. With full disclosure, and some sadness, lithium was not a great drug for me. Not having lithium responsive bipolar disorder—knowing how fabulous it can be for others—is a regret in my life. Anyone with bipolar disorder who finds an effective treatment develops a fondness for it that can be hard for others to understand. If you aren’t in the club, the hand tremors, obesity, acne, and the like can be hard to wrap your head around as a source of nostalgia. However, for us in the secret society of very much sufferers, we can develop real love affairs with our molecules of deliverance. Alex was once such individual.
However, scientists are scientists. Once you know how to read a research paper, of any kind, it’s a bit like learning a second instrument. The language of music and science is the same. A violin and a piano are different to play, but at least it’s all music. So, too, with science. Alex found lithium wildly helpful. The data he found published on it? Less so.
I couldn’t believe how many researchers seemed to care more about being right as opposed to figuring out what was true.
—Alex Mendelsohn.
He wrote a five part series for this very newsletter! Lithium is the third element on the periodic table, and a star of my recent book—Inessential Pharmacology. (amazon affiliates link). The prior articles are:
In brief, there is work to be done, from the perspective of a scientist who is also a patient, on the very old drug that is lithium. However, newsletter opinion pieces aren’t peer reviewed literature. What if he—a lowly patient—wanted to turn his thinking on the utility of lithium blood draws and turn it into useful guidance for the doctors treating the rest of us? Is there a rule against patients writing science articles on the topic of their illness? Well, as it turns out, no. However, academic publications often expect someone on the paper is the kind of physician that is part of the medical speciality. At the end of the day, you need to write to and audience of physicians. It helps to have one—or more!—of those as co-authors. Alex reached out to the two psychiatrist who he knew wouldn’t have a problem with someone who lived with bipolar taking a crack at making the care for those with bipolar disorder better.
He got on a zoom with me, and looped in
. I am proud to report being a middle author on a real scientific publication in the Wiley Publishing academic journal, “Bipolar Disorders.” This article is written by more than one person who has the illness in question. The paper is titled:A Proposal for the (Re‐)introduction of Amdisen Standardized Lithium Levels
Here is the article, linked. We are arguing for a consistent nomenclature and standardization in the reporting of lithium levels in the literature to allow doctors and investigators to compare apples to apples.
Congrats to Alex, and a gracious thank you to Awais for his help and support in getting this out the door. Patients getting to author their own science and help move the field that allows for better care in their condition forward? I’m into it.
Yay Bess Stillman! If you hadn't mentioned her, I would have.
This post meshes well with the FDA's push for "Real World Data." There's a wealth of information that we're just not tapping into.