By David Tuller, DrPH
“The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next—Stories and Advice from Twenty Long-Haulers and Experts” is pretty much what it sounds like. The anthology was published earlier this month, and each chapter is written by one or more contributors. The topics covered address long Covid through a variety of lenses–the biases of the health care system, financial impacts, the importance of pacing, the challenge of cognitive impairments, menstruation, disability rights, and so on.
I spoke earlier today with three of those involved in the book. Writer Fiona Lowenstein, the book’s editor, brought public attention to the issue of prolonged recovery early in the pandemic through a prescient opinion piece in The New York Times in April, 2020. Lowenstein is a founder of Body Politic, the wellness collective that generated early survey data about persistent symptoms after acute bouts of Covid-19. Our conversation also included two contributors to The Long COVID Survival Guide. Lisa McCorkell works with the Patient-Led Research Collaborative, which arose out of Body Politic’s efforts, and wrote about how to parse medical research; Padma Priya, an Indian journalist, wrote about the importance of peer-to-peer and community support, especially in countries with fewer medical resources.
Thanks to all three of them! I have posted the conversation on YouTube and below.
4 thoughts on “Trial By Error: The Long COVID Survival Guide and the Role of Patients in Research”
The contributors to this discussion come across as very genuine and caring people – not trying to sell themselves (or the book) to make money or bolster their careers but all too aware of the magnitude of the Long Covid problem and keen to help others in whatever way they can. It was refreshing to watch.
There have been instances in the history of the medical profession where the “survival guide” would have been quite useful (primarily for the doctor). Medical students may avoid those problems in the future by knowing some of those historical instances.
Our civilization is not immune to those “viruses”.
The phrase “trial by error” has several distinct meanings (What Is Pseudo Science?).
David Tuller, DrPH, is writing a chapter in that survival guide textbook.
Body Politic’s Covid group was an absolute godsend in the early pandemic when no one even believed in long covid and support from the medical community was absent (for understandable reasons imo). Fiona Lowenstein is one of the pandemic’s heroes in my book. Thank you Dr. Tuller for your efforts as well.
Dr. Courtney from Queen’s University Belfast delivered a lecture Viral RNA Modifications and Implications for Novel Therapeutics. https://www.bocsci.com/webinar-viral-rna-modifications-and-implications-for-novel-therapeutics.html
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