Response to Time Ideas Long Covid op-ed
On November 15, 2023 Time magazine’s Ideas section posted an op-ed from distinguished medical people, starting with the premise Long Covid research had failed.
How to End the Futile Blame Game Over Failed Long COVID Research
https://time.com/6335177/long-covid-research-failure/
I objected with this letter. If they accept this letter for publication I will probably have to take this down from Medium.
Dear Editors of the Time “Ideas” section:
There is a crucial piece of context missing from the piece “How to End the Futile Blame Game Over Failed Long COVID Research” published today.
My adult daughter is just coming out of three years of disability from a post infectious disease (Covid test rationing excluded her back then) which came on suddenly in May 2020. Hers took a year to diagnose, but turned out to be a named autoimmune disease which could be treated. She was in the end lucky; the millions of people currently cast adrift by both medicine and the payers of disability income are not so lucky.
When my father moved to Washington DC as his company’s Director Government Relations in the late 1970s, he knew it was a rough and tumble place and he sought out the best mentoring and training his Rolodex and his expense account could bear. One of the most important things he learned was, “In Washington DC, if you see something happen, figure out who benefits, and that is who was behind it regardless of how it appears.”
Given my daughter’s illness, I was very confused in mid 2022 when voices who had been denying the reality of ME/”CFS”, and trivializing ME/”CFS” for years if not decades, seemed to pivot in unison to deny and trivialize Long Covid as well. PR messages, then long form journalism pretty much saying Long Covid is psychological (I really, really wish that were true because then we could fix it, but that’s not reality), and then even pieces in the peer reviewed medical literature echoing the long debunked PACE study (paid for mostly by payers of disability income in various countries) saying ME/”CFS” can be simply cured by exercise and psych intervention. I think it’s well known now a lot of patients were driven further into disability by interventions by clinicians who believed the PACE results.
I even saw, somewhere in that long form journalism, a talking point (which was a lie) repeated, saying in 2022 “NIH has spent 5 billion dollars looking for a physical cause of Long Covid, and hasn’t found one, so there isn’t one, and we should stop wasting money trying.” It’s gone now, presumably an editor removed it after the fact.
Ever my father’s son, I kept puzzling, “who could possibly benefit enough to have had a collection of intermediaries who for years if not decades had denied and trivialized ME/’CFS’, to risk blowing their cover by having them pivot in near unison to deny and trivialize Long Covid?”
Then I realized: (back of the envelope math, not accurate) Europe and the western hemisphere have accumulated about 5 million cases of disability due to ME/”CFS” over the last 30 years, which are almost uniformly denied disability income on the assumption PACE is correct. Lifetime income exposure would be at least US$1 million per case, times 5 million cases, is US$5 trillion, the GDP of a mid sized country. Long Covid simply added, in the space of 3 years, another 5 million people disabled, another US$5 trillion exposure. Even the national programs simply don’t have it.
An objective biomarker for either, believed by medicine, is an existential threat to any payer of disability income, who if public cannot remotely get funding at that level, and if private is instantly insolvent.
Certainly motivation to run a PR campaign denying and trivializing either in the public’s eye (“Yuppie flu”, anyone?). “It’s just fatigue and deconditioning, with time and graded exercise they’ll get over it.” And more importantly causing practicing physicians to disbelieve such things exist, or believe they’re always psychological (really difficult to get disability documentation if doctors don’t believe in what you’re experiencing as a patient). And lastly, to persuade policymakers not to waste resources on these issues (remember the scandal around “CFS” funding mandated by Congress being spent on other things?). Regulatory capture, when your opponent is powerless, is not hard.
Yes, my non-expert opinion is these post viral outbreaks have been going on for at least a century, they get attention in the short term, and then get swept under the rug with the usual dose of “hysteria” or “psychological”. If these could be explained within the basic theory upon which the practice of medicine, and medical research, today and for the last 100 years have been based, we would have answers by now. We don’t have answers. With all due respect, there is a hole in that theory as big as the one Pasteur drove through, and we need researchers tasked and empowered to find that hole, not facing Semmelweis’ outcome if they say a peep against current medical orthodoxy.
The allocation of the 1.15B spent by the US government seems to have carefully avoided identifying any objective test, and carefully avoided testing any therapy (other perhaps than those recommended by the discredited PACE work). As an utter outsider, this raises a question of regulatory capture.
Back to the op-ed at hand: with all due respect to the esteemed authors, who have accomplished far more in their careers than I did in mine designing computers, this piece conveys the talking points most crucial to the special interest, presumably some payer of disability income, who faces an existential threat if ME/”CFS” or Long Covid are understood, have an objective biomarker (by the way, several are in the research pipeline, just outside what the US government funds), or is widely recognized as a legitimate disability (this includes the bed bound people too ill to come to a doctor’s office or fight an insurer). I by no means think the authors are agents of the special interest, simply that they have been exposed to and persuaded by aligned arguments.
Steve Chalmers
contact information on request
