Maneesh Juneja is a dynamic person, both in person and online, and I’m proud to call him a friend and community colleague. Unfortunately, he has been living with LongCovid, the long-term effects of the COVID-19 virus, for nearly 12 months.
If you have not yet watched his recent Health Datapalooza keynote, now is your chance:
Maneesh approached his illness with all the curiosity and technical know-how that you might expect a futurist would bring to the situation: tracking his symptoms, sharing his data with clinicians, and joining in the peer patient conversation online.
He notes that the pandemic has dissolved barriers that had previously seemed insurmountable. Just a few minutes after sharing his personal tracking observations with his clinician, for example, the data popped up in his electronic medical record.
He also kindly mentions my research into peer-to-peer health care. I’m thrilled to know that I played a role in connecting him and others to this wellspring of information and support.
Watch the keynote and let me know what themes and questions emerge for you. For example, what are the other false boundaries being exposed by the pandemic? What evidence can we add to the case for making peer-to-peer health care part of the biomedical toolbox?
- Crazy, crazy, LongCovid, obvious
- LongCovid’s citizen scientists
- Patient-led research is a key element of pandemic response
Image: Fields of Gold, by Heath Cajandig on Flickr. Sunflowers turn toward the light and share nutrients with each other — an analogy for peer-to-peer health care.
Susannah Fox says
This blog is my outboard memory. I add links to intriguing articles and illustrations of the themes mentioned in my posts.
Today: John Mandrola’s column, “Why Long COVID Worries Me.” (Note: You have to register to read it, but it’s free to do so.)
Before you click through, please know that Dr. Mandrola describes himself as a “medical conservative.” This means he “adopts new therapies when the benefit is clear and the evidence strong and unbiased” and “vigorously oppose[s] hype in all its forms.”
“My best answer to the problem of long COVID is empiricism.
First is to remember that most medical interventions don’t work or have modest effect sizes; magic bullets, such as antibiotics, insulin, and HIV medicines, are the exception, not the rule. Thus, not only should we be pessimistic that long COVID symptoms will have an easy fix, we should also be alert to the danger of iatrogenic harm.
Postviral syndromes are real. The pandemic has caused a lot of infection; there will be a lot of postviral syndromes…
…Diagnostic pathways and therapeutic interventions should be studied in trials that include proper control arms.
People with any symptom are, by definition, suffering. Caring, empathy, and the strength to let time and nature do the bulk of the curing seem to me the best default.
Make this the control arm; then prove that intervention is better.”
As I read his column I thought about the true boundaries that exist in health care (as opposed to the false boundaries that Clay Christensen helped me to see). For example, there is a true boundary between valid treatments for a condition like, say, diabetes, and what are invalid treatments. But in the case of an emerging illness like LongCovid, the boundaries between what we know and don’t know are less clear. Some people know more than others. And lots of those people are patients, not clinicians or researchers. The medical conservative would say (I think) that until more is known, we should not rush to test and treat people with this emerging illness.
What do you think?
Gary Wolf says
“Postviral syndromes are real.”Understanding why this sentence was necessary to write would unfold a saga with many tragic episodes. Yes, the practical guidance in the essay is sensible: don’t unload treatments on patients if you don’t know what you’re doing. And yet there’s something even more important suggested here, which is that the biomedical approach—symptom/test/diagnosis/therapy—is poorly suited to many health issues. The testing regimen may be dubious for a wide variety reasons including fundamental research flaws, inadequate theory and practice around testing conditions, and corrupt incentives. And even where testing is reliable, people still face a lack of effective therapies. The empiricism that’s most useful under these circumstances isn’t a biomedical research empiricism that relies primarily on group research, but a more direct empiricism of care that applies n-of-1 methods to test ideas. As I read this somewhat frustrating column, I found myself thinking: for Long Covid and other complex chronic conditions, interventions worthy of larger scale studies will emerge more quickly from the empirical groundwork of patients and their healthcare and allied health allies than from efforts to win acknowledgment of the reality of the syndrome from biomedicine, even when physicians like Dr. Mandrola grant this from the start.
Susannah Fox says
Thank you, Gary, for this “Yes, and…” comment.
“Postviral syndromes are real” –> Yes, and let’s remember that the next time people are dismissed or disbelieved. Let’s include people reporting these syndromes in the work to document and track their trajectories.
“First, do no harm” –> Yes, and do some good by helping people create a safe N=1 protocol for what they are observing to be useful treatments.
What other “Yes, and…” statements can we add to the mix?