By David Tuller, DrPH
Last month, The Nation published a wide-ranging overview of the impact of long Covid on the United States by Fiona Lowenstein and Ryan Prior. Called The Long Covid Revolution, the article proposed a number of steps for addressing the fallout and highlighted the critical role of grass-roots patient movements in pushing for change. Lowenstein is an independent journalist, the founder of Body Politic, and editor ofThe Long Covid Survival Guide. Prior is a journalist in residence at the Century Foundation and author of The Long Haul.
A few days ago, I spoke with Prior, a friend and colleague, about how he and Lowenstein came to write the piece, why “long Covid” is a political term, and related stuff. I didn’t get to everything I wanted to mainly because I try to keep these conversations relatively short for easier viewing. (Lowenstein, also a friend, was asked to join us but unfortunately could not. Also, I should have combed my hair a bit. And I just can’t stop my eyebrow from hopping up and down.)
1 thought on “Trial By Error: “Long Haul” Author Ryan Prior on Why Long Covid Is a “Political” Term and Related Stuff”
To me, what’s coming across here is something that some ME sufferers and advocates have been arguing for some time – that disease must be tightly defined for scientific research to produce meaningful results. However, politically, I think it’s important that groups or communities of patients don’t isolate themselves from others who face the same or similar injustices because, by working together, they can achieve so much more. It seems that many Long Covid patients will suffer from something that looks very much like ME. It may be ME, or it may be something that closely resembles ME. I suspect how that turns out will largely depend on how tightly ME is defined – if the research definition can discern between symptoms caused by one pathogen or class of pathogen and another. Perhaps in time there’ll be a definition that can do that.
Of course, employing narrower definitions risks patients who fall outside the definition feeling excluded, but that would be far less of a problem if there was a wider community that patients were already a part of (had been encouraged to join) that worked not just for sufferers of the disease (e.g. ‘ME’) but for patients with post-infection or other fatiguing and debilitating illnesses in general, and that itself operated as part of the wider disabled community. There’s an opportunity here for the Long Covid and ME communities to join forces in a really constructive way – not because Long Covid is ME or vice versa, (I suspect that employing only tight definitions will sort out their mutual relationship), but because both are suffering the same or very similar ‘political’ problems. (By ‘political’, I’m talking about health politics here rather than party politics.) Likewise, I think it’s important that Long Covid sufferers stick together and maintain their Long Covid identity for ‘political’ purposes whilst pressing for tight definitions for research into its constituent parts – lung damage, debilitating fatigue/PEM etc.
It should be possible to press for narrow definitions for disease and yet stick together to support each other and lobby for change – these two approaches are not incompatible so long as people are clear about how they operate and are confident that they will receive good support from their fellow sufferers no matter what their illness turns out to be.
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