Communication is so vital. Science and tech types often think they know everything, including how to communicate so the message is heard by all sorts of audiences. They don’t. (English major married to a mechanical engineering major for over 30 years, plus I spent my career writing tech manuals.) The medical community needs to decide what message they want to send, then let people trained in communications do the talking. For me, the messaging throughout the pandemic (but especially in the beginning) was severely lacking in cohesiveness and anticipating what different audiences might ask. Even now, many people believe the vaccines were created “overnight,” because the message that the technology had been developed over the last decade wasn’t communicated. Compare it to something the average person can understand, e.g “it’s still a car, but we tweaked the styling.” The messaging on masks was doomed when the first direction on masking was that it “wasn’t necessary.” People are left wondering who and what to trust when messaging keeps changing, and they found stability with the outliers who clung to incorrect information no matter what.
You are so right. Consistent messaging is crucial. The challenge we have (and had during the throes of the Pandemic) is the lack of cohesion amongst the various national, state, local, and community health organizations. Hell, even the CDC had internal communication issues. Our country is so large and so diverse, I don’t know if there will ever be the possibility of cohesive messaging. Throw into that challenge the huge gap in educational opportunities among underserved and marginalized communities (both urban and rural), and the voices that simply utilize the “yell louder” approach to messaging, and those that need to understand the problem, andthe path to addressing it (masks, distancing, vaccines), are well and truly screwed...by their own volition. People are not learning critical thinking, problem solving, and science during their school years...and it shows.
I appreciate what you are trying to do here. I do. But as a medical student of the early 2000s we were also told that no one should be in pain, treat pain aggressively and if we don’t we are bad doctors. People cannot become addicted if they have true pain. There were “studies” to back this up… We have to continue to question the motives and the policies of our government and our public health system. If we do not, people die. We have an ongoing opioid epidemic to prove this.
Let us not forget that the cdc originally told the public that masks were not necessary. This was not true, doctors knew this. But we needed to say this to prevent panic and preserve PPE for the medical community. Was that the right move? What if instead they came out and said we need to treat this like a war-time emergency? We need all people who have masks to drop them off so that the medical community can go to war against this virus.
So now everyone is questioning Fauci. He will be the scapegoat for the science community. I stand behind him as a physician having to make extremely difficult decisions to protect the lives of many. No question. That is what doctors do. But at the same time, the cdc is also telling people to believe that a a specific type of virus naturally appeared in one of the only cities in the entire world that happens to study these exact viruses. When you hear the sound of hooves…. This is no zebra.
If we don’t question it, we cannot make policies that will truly protect the public. If we cannot admit when we made a mistake, more people will die.
As someone that has family that is now struggling with pain from severe scoliosis and drug dependency, this truly resonates. Great analogous example of why health shouldn't be a policy driven but rather a holistic individual approach.
Thank you for posting an article that proves my point. As an infectious disease expert, Dr. Fauci knew that to protect anyone from a potentially communicable disease one should wear a mask (and gloves). This is standard protocol in all medical settings. As a physician myself, I am saying we knew this as well. We also knew that there were no masks. I was part of an organization that was trying to find PPE for hospitals across the country. I do not think that Dr. Fauci said this with malicious intent. He did this to protect from hoarding and panic. His intentions were good. His medical decision making was heroic. At the same time, he was trying to protect the science community and his organization with some of his other decisions. I doubt these are actual crimes. But if we can’t discuss what actually happened we cannot prevent mistakes in the future. If people keep trying to post “gotcha” posts in an attempt to shut down discussion, we will not make progress. In order for the CDC to regain trust, they have to be open and honest about why they did what they did.
I am a physician. I believe in science. I am terribly disappointed in public health and policy--often to the point of despair. The decision to make NPI for the pandemic personal decision and then not adequately educate people has led to excess deaths. I abhor the CDC and that is a huge disappointment. I think this is a deeply polarized country where people are just spoiling for a fight, but for public health to not follow the science, but to follow politics makes me so disappointed and skeptical.
Apologies for seeing this so late, but I felt I had to respond. I grew up wanting to be a CDC researcher and detective but life worked out differently. Over time, CDC has changed from the organization I saw as a student in the 1970's, in part (significant?) due to the transition to a politically appointed director, instead of a long-term professional, who really should be segregated from political pressure. To put a point on things, Robert Redfield was not the CDC Director they needed at that time, nor, in my opinion, was he ever suited for that role. Further, efforts to reduce funding and politicize the agency saw the departure of a significant number of older, and generally extremely experienced personnel, most/all of whom were capable of speaking truth to power (at least once, until fired).
Public Health, overall, didn't intentionally fail the messaging problem but we faced issues with the amount of data coming in, and how to address the misinformation flood that also occurred. And misinformation poses a serious issue: It doesn't have to be vetted and verified, while real public health data does face that requirement. Consider the amount of data YLE must review to put out these rather comprehensive missives, along with graphics. I can speak to the amount of data I have produced for the rather large non-profit I support. Every recommendation had a citation, or, if it didn't was expressed as opinion but with a rationale included to allow evaluation.
During the busiest periods of the pandemic, especially from March 2020 through about May 2021, I saw so much material, read and evaluated the research based on the reports, I could easily start with a solid opinion of the state of science at 9am, but by 3pm I might have had my entire paradigm shifted on potential treatment, or, say, droplet vs aerosol, or hydroxychloroquine as a useful modality or not. My ongoing discussions with clinicians led to positive information on what did and didn't work in the ICUs, and I was among the earliest to consider, based on clinical data that SARS-CoV-2 was actually a vascular invasive virus, rather than purely acting in the lung. I helped spread that information among my network of researchers and clinicians, but in no way was I the sole originator. It was a group effort in PH to make leaps like that.
CDC over time has become a more academic institution. Rather than, as an agency, leading from the front, they amass evidence, analyze it carefully, and eventually issue a report. Note, for instance, the May 2023 recommendation for air filtration and exchange... over a year after that was recommended in literature. If we understand their mission is to reach a science-based conclusion as an epilog rather than throwing ideas out for random trial, this makes sense, and it's important we have such an organization. Forensic and careful study is important. But the PH professionals out in the community were the real heroes and unfortunately, the PH professionals in the field have seen reduced funding, loss of authority, and during the pandemic, politicization of their messages. I can say that the Governor of Oklahoma took particular interest in the weekly summaries of COVID information published to the public, to an extent he'd never exercised before COVID, because he wanted to make sure the "right" message (and numbers) were conveyed. "Right" didn't always equate with accurate but he was seen as promoting a position statement claiming the health effects of the disease were overstated. The Staff Epidemiologists I interacted with were less than pleased, but anything they wrote for public consumption passed through a political filter before release. It should be noted that FDA and CDC, at the Federal level, had the same requirements at several points in the pandemic.
Ads to submitting to the whim of politics, effectively declaring the pandemic over, I must agree. "The Science" is only starting, by mid-May 2023 to look like the disease is waning, and we might be seeing a return to some form of normalcy. I say that recognizing we're still seeing 1000 or so deaths per week related to COVID-19, and that we're seeing a plethora of variants reveal themselves routinely. But even there, we're starting to see older substitution/deletion events resurface, and we're seeing recombinant variants emerge; some are quietly suggesting we've run out of unique substitutions and variants are recycling, looking for an advantage again. Another reason we're seeing fewer cases, in my opinion, is the lack of testing. A long time ago, doing clinical research (or maybe even before that in my life as a paramedic) I learned that, in order to find a fever, one must check a temperature. And President Trump did state that we'd have fewer cases if we stopped testing. I offer that's where we are.
Public Health policy is a different matter. That's often decided at the State level, and there are plenty of legislatures who want to prevent the "errors" of the pandemic... also known as established public health processes... to never be employed again. I've little doubt the next aerosol outbreak will see a lot of those suddenly be reinstated, but because of state laws, they will in fact also see legal battles ensue, and a lot of polarized wailing and gnashing of teeth.
My little slice of Public Health has indeed followed the science as I was trained to view it. I hope, in the future we continue to do so.
If we’re going to restore trust we need to start with an elementary school program that teaches critical thinking skills. These are just as important as learning to read or do arithmetic.
Absolutely agree - but would bet that would generate "debate" about how to detect and avoid bias in a school program part of which is about how to detect and avoid biases. Yet there are some biases I'm pretty sure everyone would agree are, such as regression towards the mean and selection (volunteer) biases
Katelyn - Curious where you side in the debate on viral Gain of Function research?
Do you support the views of Ralph Baric, Peter Daszak, Shi Zengli, and Anthony Fauci that it is useful to create chimera viruses which don't exist yet in nature in case someday they do exist in nature? Should we increase in the transmission and/or pathogenicity of potential pandemic pathogens in labs in order to potentially develop therapeutics as they argue?
I think this is where the "prosecute/fauci" tweet comes from, as each day more evidence comes to light that the lab leak is likely, and while Fauci was only tangentially involved (funding a small amount of money), off camera he was shoring up opposition to even exploring this hypothesis which we only learned of years later through FOIA requests.
He was duplicitous in 2020 when in his public facing role he acted like this was an absurd conspiracy theory for quacks, but behind the scenes was organizing the very people involved in this research to get their ducks in a row and publish papers guaranteeing it was natural origins (just look at the history of how the Proximal Origins paper came about) - then back in public facing pretending he had no involvement in those studies and they were just a product of science.
Then, Fauci, with the support of our government, got social media companies to suppress and censor any discussion of the lab leak hypothesis for over a year. He likely perjured himself in May of 2021 (though I truly believe he was ignorant of what was initially going on - he's high level and can't always be in-the-weeds).
I assume Musk got even more details on how the sausage was made in suppressing the lab leak through acquisition of Twitter and prompted this tweet.
What I don't understand is how the left (which I am a part of) is giving Fauci a complete pass on this when every FOIA request, every new piece of information, continues to make it very likely the virus was created in a lab, it did accidentally leak (as is somewhat common), Fauci realized our ties to the lab, realized he was on record for supporting this type of research, and did everything he could to shift focus to natural origin and halt any discussion considering a lab leak.
EVEN if it was natural origin, his actions behind the scenes in 2020 were unethical and not in the spirit of science.
A while back you posted some questionable statements, ignored requests for evidence, and generally made me wonder what your agenda might be. After seeing the raft of crackpot conspiracy substacks to which you subscribe, I wonder no longer.
Would you please cite the questionable statements I have made where I ignored requests for evidence? It might be tough to sort through old comment sections and topics, I get that, but I do keep a database of comments I make on substack so have posted a few below - are any of those the ones you are thinking of?
As for "the raft of crackpot consipracy substacks I subscribe" - does that include Eric Topols Ground Truths? Or perhaps "News from those Nerdy Girls"? Emily Osters "Parent Data"? Stump MEEP on Mortality? Matthew Yglesias' "Slow Boring"? The Unbiased Science Podcast - perhaps? Caitlin Rivers Force of Infection? Privatdozent who covers the history of math through photos?
I concede for every one of those I have 10 "Steve Kirsches", but that is the base rate of Substack. In addition to the hundred+ substack subscriptions I also subscribe to the New York Times, Washington Post, New York Magazine, Wall Street Journal, National Geographic, American Family Physician, The Local (Scandanavian newpaper), and probably a dozen other publications I can't recall. I like to read from as many diverse viewpoints as I can. Plain and simple.
Here are some previous comments I have made to KJ - please let me know if these were where I was requested evidence and ignored it, if not if you can remember as much as possible of the context I am sure I can dig it up for you.
(Suggesting YLE digs into what is happening in Vermont closer)
Stephen, aside from me framing lab leak as "likely" in my question to Katelyn - what part of my original comment is conspiracy? I am commenting on things that actually happened.
Can't reply in much detail today, but can get back to you tomorrow.
For what it’s worth, both former CDC Director Redfield (a trained virologist) and former White House Coronavirus Response Coordinator Birx are both on the record that the virus was a lab leak.
I've read science based medicine for years, and of course have read that article and Dr. Gorski's previous writeup in May of 2021 denouncing it as a conspiracy theory. I was probably still thinking it was a conspiracy theory around that time too - my view only started to change once I learned that the whole time Facebook was suppressing any discussion of it at behest of the government did I start to take a second look.
Consider this passage from Gorski:
"By by May 2021 it clearly had developed all the hallmarks of a conspiracy theory, complete with a coverup narrative in which China and powerful forces in the US were “suppressing” all mention of a lab leak as a “conspiracy theory”
How did that age now that we know in fact powerful forces in the US were suppressing this?
And I am not even saying "this is what happened". I am pointing out that we now have evidence that Anthony Fauci went out of his way to ensure that the natural origin theory became dominant, suppressed the lab leak discussion, and labeled anyone who disagreed with him a conspiracy theorist while FOIA records show he was worried of lab leak himself (and I would be to if I had been on record supporting Gain of Function research for the last 8 years and had funded it).
What I am interested to know from Katelyn is not her thoughts on lab leak. I am interested to know in general, does she support viral Gain of Function research? Is this a good idea, as Fouchier, Baric, and Fauci believe, or, are the risks not worth the rewards as argued by Ebright, Lipsitch, etc.
I find the arguments outlined by Yamauchi here compelling, curious your thoughts?
First, I want to say thanks for the work you have and are doing. I have spent my career as an emergency physician, now as medical director of a health department in a small rural county in North Carolina. I have no public health background, so once I discovered your work, it has been invaluable. Thanks
I hope you’ll be able to take a few moments to hear these comments. They also come from my experience as a coach working with doctors burned out and/or struggling in their beaurocracies, as well as what I learned following a professional catastrophe by researching and writing a book about what leads a person to make the decisions they do.
I’m going to be a bit provocative here. I don’t think we in public health should focus on the goal getting people to trust public health. It's certainly possible, but not really in our control. Feeling responsible for something out of one’s control is a recipe for frustration.
What we can do is give people the opportunity to trust those of us in public health. That is in our control.
And I don’t think the ‘mistakes’ we in public health have made were mistakes at all. Here’s what I mean. It seems in the face of so much uncertainty, people fell into one of three camps. 1) Looking for ‘answers’ and trusting those with more expertise; 2) Looking for ‘answers,’ not sure who to listen to, but ultimately deciding to trust those with more expertise; 3) Looking for ‘answers’ and in the absence of hearing anything that resonated, instead looked to connect the dots in a way that was plausible enough as a guide to act on.
Our brain’s main job is to decide what the next step is going to be in the face of the uncertainty we each live with each and every day. What task should I do first? What’s the weather really going to do today? What do I do for my kids today? On and on and on, not to mention local, national and international issues.
People are used to hearing the ‘answer’ from science- usually hearing it once the groundwork has been done, mostly out of sight until enough has been done to draw conclusions. But this was very different. Science was evolving in real time. It illuminates how difficult it is for many to live with the uncertainty of evolving science. Those in the 3rd camp have not been able to at all. In truth, science never had a chance with these folks. Science was unable to provide the very thing they were looking for- a certain ‘answer.’ They viewed the pandemic as a problem to be solved rather than what it really is- a dilemma needing a strategy for how best to respond. And when the given ’answers’ either didn’t pan out or had to be changed in the face of a changing landscape, their only recourse was to blame someone for getting it wrong because, well, their ‘answer’ was wrong. And so it had to be the ‘expert’s’ fault. Searching for a solution when the issue is a dilemma is a frustrating dead end.
It was also revealing to me that our decisions largely- and value judgements for sure- take place outside of awareness, in what Shankar Vedentim calls the Hidden Brain (HB)- processing we have no insight into and no idea is going on. It starts from a person’s worldview- the way they believe the world works and the ‘rules’ they use to navigate this- a product of genetics, upbringing and experience. Think about someone who views the world as a glass half empty vs a glass half full; or an optimist who always sees the opportunity vs a someone who always sees the way it won’t work. This worldview forms the lens through which we interpret the data our senses tell us and from which the Hidden Brain forms a story to explain what’s going on. And this is all happening outside awareness. We just do not even know this is going on or even realize we have a worldview that underpins decisions and choices.
And the HB does not communicate in words. The story is passed to the aware functions through feelings, emotions, intuitions, and it is there we attach words, numbers and descriptions in order to share it and ‘think’ about it. When we have a belief, it is not the product of having ‘rationally’ considered the factors in making these value judgements. It is a product of hanging the ‘facts’ on the scaffold of a worldview to form that story. And the default approach of the aware brain is to rationalize, justify, and defend the story, ignoring, dismissing or overlooking that which does not support it. I liken that to the job of a press secretary. It’s just easier to do that. And we are not even aware of that. We think we have thought through and made a reasonable conclusion. This is why facts do not change a mind not open to receiving the facts. Our inner press secretary is just that powerful.
We do, however, have the ability to think things through, embrace the data that becomes apparent and reflect this back to the HB; it’s just takes a lot of brain power to do. In any event, it is the HB that decides whether to amend the story, again outside any awareness, and balanced against that worldview. We can change our mind- but this takes a catalyst- something really impactful that makes it clear that maybe the current story is not the best one available to explain what’s going on and upon which to base choices. And a catalyst cannot be manufactured. It is only in looking back that you can say something was a catalyst. And our stories are so closely tied to self image and self worth, it takes something pretty significant for our minds to be willing to spend the energy to ‘rethink’ the story.
So if I expect to regain trust, this suggests there is something I can do to be that catalyst.
And that is not possible.
What I can do is to provide an opportunity. The person can take it or not. I cannot tell you how many groups, elected officials, school boards, pastors, angry public I have stood before during the pandemic absorbing the negative energy- as we all have for sure- some able to grasp my feeble attempt to put their concerns into the context I have tried to describe above; most not ready. I cannot count the number of phone calls and emails from concerned fellow citizens asking for advice- true for all of us- appreciative because they trusted me with guidance in the face of uncertainty. Was I always right? That didn’t matter as long as it helped them to choose their next step.
What I think I have learned is: try less to depend on regaining trust, and more to support people to take their ‘best next step’ given what is known at the given moment in the given circumstances. I think this means supporting people to frame their issue in a way that they can make use of the data that is known at that time to gain ‘enough’ certainty in the given circumstances to take the next step that seems best. In the end, that’s all people really want and need.
And by their experience about how it worked out, perhaps that gives further credence to group 1 to continue trusting, to group 2 to decide where to put their trust and maybe group 3 to experience a catalyst to make it worthwhile to ‘rethink’ their story, and over time, enough group 3 people do that in favor of trusting public health that it is no longer acceptable by most of the others to not believe that way.
As an evangelical pastor said to me after many conversations: “I hear stuff different from what you are saying, but I believe you because you’ve never steered me wrong.” Truth is I never steered him at all. He made his own choices; I just helped him frame his issues.
It’s a long road, but if we in public health are to sustain and survive, think of ‘regaining trust’ as an aspiration- something we hope can happen, but when it does not, not feeling like we have failed- and instead focus on supporting people in their decision making- an expectation we can live up to; whether the person takes the opportunity or not is something only they can do. That’s a lot less draining, and we can save our energy for where it’s best deployed, and be ok with living with the consequences because as you say, when it comes to a virus, we are all in it together.
maybe, just maybe …..
Thanks for hanging on to read all this.
Sorry if I have just repeated stuff you already know
As a note to other readers, Mark Jaben has a book available on Amazon, "Free the Brain" that looks like an illuminating text. Note, this is an unsolicited endorsement: I don't know Mark or any of his associates, nor does he know me! I just like books. 🙂
You wrote: "What I think I have learned is: try less to depend on regaining trust, and more to support people to take their ‘best next step’ given what is known at the given moment in the given circumstances."
Sure, but the coercion of COVID vaccine mandates do no lead to people agree that their compliance is their "best step" for their health, but instead the best step for them to keep their job or stay in school when the don't really want to take the shots.
Declining trust in public health has resulted in far fewer people getting COVID booster shots, as Katelyn has pointed out. That is seen as a problem since not everybody is being coerced by a mandate or willing to take a bribe to accept the vaccines.
When COVID vaccines were first release, people rushed to cut in line to get them before other people. People belived much more in public health in 2019. Now COIVD vaccines are going unused, and people are not rushing to get booster shots. The shots, plus the policies and the science surrounding the shots have led to most of this loss of trust, in my opinion.
You have used some rather inflammatory statements in this comment that I'd like to work through. It's pretty obvious you're not a fan of the vaccination program, and I'm interested in why.
I'll offer that there has been a systematic attempt during the COVID-19 pandemic to erode trust in the public health structure from a number of sides. Loss of talent at CDC did not help them provide their best messaging, which led to problems early on. Loss of the CDC and NIH teams in Wuhan meant we did not have on-the-ground intelligence to provide more data, meaning our early information was solely shaped by what we got directly from the Chinese government (not much) and surreptitiously from sources within the Chinese medical community, often with them fearing reprisal. On the other hand, there have been social media and popular press posts that misstated facts or made significant efforts to make early statements seem to mean something not stated.
I've been a scientist all my life, and my language tends to be precise. Sometimes that also means the interpretation is nuanced. However, if I tell you the goal for a vaccine is reduction of serious illness, hospitalization and death with a target efficacy of greater than 50%, that has a specific meaning. Note that nowhere in there is a statement about preventing illness or transmission. In fact, the mRNA vaccines well-exceeded the target efficacy and met the goal, with an added benefit of reducing illness and shortening disease course (and thus transmission) *FOR THE ANCESTRAL WUHAN STRAIN* of the virus, which was the published genome (we have not, to my knowledge, gotten samples from China of the original viral agent) all of the vaccines save, perhaps, the Chinese vaccines were developed from.
The amount of data we've had to consume, interpret, and form coherent opinions on has been tremendous. I recall seeing a statistic, which I fear is optimistically low, that over 300,000 unique research articles had been published regarding COVID since January 2020. No individual, and no reasonable committee could read all of those, so we have individually, or organizationally focused on articles that were consistent with our mission(s). For me, this meant focusing on a broad picture of COVID, and as detail emerged, effects on pediatric patients. I've had to form recommendations for a large volunteer organization with a youth element and an adult element, with meetings, training sessions, and gatherings including summer and winter camps. I was interested in spread, duration, transmission, and mitigating those with both pharmacologic and non-pharmacologic means. Because of the volume of information my opinions changed frequently, sometimes several times within a day based on the studies I read reports on, and those I evaluated as well-designed and performed. This didn't mean my advice on, e.g., vaccines was ill-formed or contradictory. It meant I was willing to change my position, and state that I'd changed and why, based on available evidence.
I would like to hear your reasons for the rather inflammatory discussion of vaccine mandates, and likely vaccines in in general.
I just got around to reading your comment. You sound like a well-trained open-minded scientist with excellent thinking skills who argues at the highest level of Graham's Hierarchy of Disagreement and Internet Arguments. Keep it up. You probably realize attempting to convince the inconvincible can lead you down the rabbit hole, trying to prove a negative, etc. As you imply, using the best available data means one's view may change when better data becomes available.
Thank you. I've spent a lifetime learning to be a scientist, and I'm still learning. Considering the areas I've worked in, learning to argue my points successfully has been a requirement, as I've wandered into a couple of areas where I came in a little light on extensive formal training. How I've succeeded has been a long, and continuing story.
Thank you for being such a strong voice for public health science. It would be interesting to know how other fields of science are perceived by the public- NASA, green energy, seismologists, etc. My sense is that NASA does a good job of communicating as does Dr. Lucy Jones in disaster preparedness. Dr. Fauci is, of course, a national treasure as are you. Thank you for translating scientific data into layperson's language.
Absolutely! And read my post. That denial has been fostered by Republican politicians and still is - now their story is “it’s happening, but it’s not driven by human behavior”. Because too many people can see that climate change is real but the reason is it is still not widely accepted and is “debatable”.
I think it is literally vital for survival of civil society (and in the face of global warming - all of us) to take your and Oxford's excellent analysis one step further. In their prescient book from 2010, THE SPIRIT LEVEL, Wilkerson and Pickett, two English health epidemiologists relate many parameters of societal morbidity (including trust), both internationally and among all US states, to levels of INCOME INEQUALITY. This analysis was reinforced by a 2016 paper "Growing Apart, Losing Trust? The Impact of Inequality on Social Capital" by Eric D. Gould and Alexander Hijzenfrom written in 2016 for the IMF.
It is quite apparent to everyone that the USA is living through an unprecedented period of income and wealth inequalities and disparities. While the pandemic induces fear and irrational responses on an intimate personal and family level, income inequality systemically disrupts civil society - societal and governmental institutions - creating systemic and environmental malaise, alienation, insecurity and deeper fear. The power of the very, very wealthy distorts legalities, politics, industry, governance, communication, employment as well as faith, hope and trust. No wonder people are acting bat-shit crazy in the public square. MAGA is a symptom not the disease. DeSantis is an infectious agent, not a commensial politician.
Primary prevention in this case means disrupting our passive "politics as usual" to stop the government supported robbery and redistribute resources to people and civil society. The American Rescue Plan by President Biden was, in fact, an unprecedented, revolutionary approach to government in these times of need - and it worked. Alas, few people realize this (AOC and Sen Warren, Thomas Picketty do) and an articulate politics to both fight the pandemic and monopoly wealthy has yet to be born. The first step in finding a cure is to know the origins.
"Infectious diseases violate the assumption of independence—what one person does directly impacts the person next to them.” This concept seems to me to be the most basic and the least accepted of the entire COVID experience. The idea that we don’t have unfettered freedom to do what we individually want frequently has a deaf audience. Poor analogies were made such as mandatory seat belt wearing - which in itself had a significant negative reaction when it was introduced. Comparisons to stopping at stop signs and red lights would have been better. Of course unscrupulous politicians taking advantage of public fears and the innate selfishness in most of us - to a greater or lesser degree - hasn’t helped. This notion of common good should draw upon existing, largely accepted rules of appropriate behavior. As for diminishing trust in science and medical science, one need only look to lack of vaccine compliance that had been creeping into the mainstream more and more, even pre-COVID. And climate change deniers. The Republican party has led the way on these issues of denials and I will never vote for one again unless he clearly supports the science and walks the walk. As for communication and trust in the CDC et al, the lack of confidence has been fostered by the unwillingness of those bureaucrats to admit their (sometimes stupid) mistakes. Like the WHO first telling us that it was spread by contact and then - only after the beseeching of hundreds of scientists acknowledged not the basic truth and a mistake on its part, but put out a lame qualifying statement that COVID “might” be spread through respiratory exposure. This is the sort of thing that just leaves people - well educated or not - with no confidence in public health organizations. Talking down to people, as well, is a serious problem as it offends and turns off people to even listening. Admitting to ignorance and explaining the “why" of the ignorance - not enough data - would make reversals of advice more widely forgiven and accepted. We should also overhaul the FDA et al, which were (laudably) created to protect the public from dangerous drugs and inculcate an attitude that permitting new solutions to significant crises and major problems of disease shouldn’t take so long. Cost/benefit analysis is too slanted to delay and caution than to actively trying to solve problems that impact a whole society and are urgent.
Katelyn - thank you for all the time you commit to these articles. Been a reader for many months.
Speaking from personal experience, I think the motives behind the decisions throughout the pandemic are eroding the trust. One thing that needs to be done is direct conversation with people that are losing their trust in the community before they get lost and turned off completely. I know this can be difficult with extreme members of certain political bases but hope isn't lost with people who are now raising an eyebrow.
As an example, initial messaging regarding vaccines was to get vaccinated/boosted because it would help reduce the spread and severity of the disease. My first bout of COVID (Delta era), before my vaccination, was asymptomatic with the exception of loss of taste and smell which returned after a few days.
My experience wasn't severe but it was still something I didn't want to experience again and got vaccinated within a week of eligibility due to the messaging. Several months later, after my son's daycare was dealing with an outbreak, I spread COVID to several people (5-6 I know of) despite the vaccine, prior infection, and not having any symptoms other than a headache. My family members that were boosted had far more severe disease than I did. It led me to think, why did I get this vaccine and why did they get boosted? Who benefitted from the vaccination? I certainly didn't and the people in my household/community didn't.
Now I am being told to get boosted and was recently chastised by an urgent care doctor for not being boosted. Why? CDC website doesn't give me any clear reason except to "prevent severe illness". I personally never experience severe illness and have a natural level of immunity by now so why get vaccinated?
The only motivator for this message that I can see is profit for the drug makers? Maybe? But now I am skeptical whereas I never was before.
I believe in the scientific community as a whole. It's made up of good people with the intentions of doing what is right for many. I received my flu shot like I have done for most of life. I believe in the science behind it. But this vaccine isn't something I trust anymore.
As it relates to this pandemic, I now out-right refuse to get boosted until I see a reason that addresses my concerns with it. CDC isn't clear, there is too much noise to research an answer. It's a conversation I had with my PCP as well and been told it isn't necessary. It's contrarian to the overall public health message.
Dialogue and messaging needs to exist for people like me. I'll never align with the likes of Musk and disagree with the notion to "prosecute Fauci" - absolutely ridiculous. There are many people in the middle who have been turned off from the guidance and the way things have been handled throughout the pandemic. It is still possible to get their trust back and not get caught up in the big picture of statistics, surveys, etc. Focus needs to be on messaging to the people who are willing to listen.
I’m going to address this as a 70 year old who lived thru a childhood that included mumps, measles, and chicken pox. I had mild cases of each one so for me, childhood diseases were no problem. However- Children died from complications of measles. There was also no vaccine for polio in my early childhood, but we received a shot every summer that was thought to reduce the severity of polio and later on my family lined up in the school cafeteria on Sunday afternoon to receive a dose of a pink liquid on a sugar cube. We lived in a small town 5,000 ppl) in a rural area and polio was not rampant, but every year one or two people were infected and it was tragic. I was also part of the public health campaign to eradicate small pox. Public Health nurses came to our school, administered the vaccine, and taped a plastic shield over the area. After our baths, our parents dutifully taped the shield over the ugly pox sore for a prescribed amount of time. All of this is to say- Public Health and epidemiology of communicable diseases is not about my individual experience. It’s about the greater good of our country. It’s like volunteering to go to war for your country. It’s a fact that vaccines are not perfect, but over time vaccination reduces disease and saves lives.
I agree with you on the rationale offered for vaccines. All the time now we hear that vaccines won’t protect you from infection, but will reduce the severity of the disease. But, earlier, we were led to believe that transmission would be halted - or greatly reduced - and they we suddenly heard about so-called “breakthrough” infections. I have never heard any public official body acknowledge that earlier opinion was wrong and that they had an obligation to “fess-up” that they should either admit to a mistake or admit that it was not true at the time, if they actually thought that infection was still quite likely. Another example of refusing to take ownership of mistakes and misinformation or their own making or at least misinformation that they should have corrected. Maybe it was just a calculated decision, as so many communications seem to be, to convince more people to get vaccinated. All it really did was undermine belief in the organizations.
Just saying "Sorry, we made a mistake in our understanding in something we have never seen before and that understanding continues to evolve" would go so much further rather than saying nothing and leaving individuals to speculate/seek out the opinions of unqualified people with a voice on the internet.
Changing recommendations in response to a change in the facts is not a "mistake." It's just the opposite. It is, in reality, how science works.
Dr. Clark has already pointed out what was wrong with your initial comment. I can add nothing to what he has written. Perhaps you should have taken it to heart before commenting.
I understand how science works (former marine biology major in college) and also realize that science shouldn't be commingled with policy or decision making. Maybe the scientific community would have more trust with the public if they weren't driving policy and changing the policy as their science research progresses. Stick to the facts and observations while getting profits and policy goals out of the equation.
The second half of your comment was unnecessary. I wish social presence had a Karma system like Reddit that was tied to everyone's social. People would be a lot more considerate online once they get flagged as an asshole by the general public and no one wanted to interact with them.
P.S. making a recommendation based on available data that later needs to be changed is not a "mistake." It is, in fact, exactly the opposite. Taking a stance and then refusing to change it when facts demonstrate the need to do so, on the other hand, is certainly a mistake.
I recall reading preliminary studies did show that transmission was reduced by vaccination. Then came Delta, followed by Omicron. My sense is the vaccine did not provide such benefits in light of these variants. However, situation is still pretty much what was promised: reduced hospitalizations, and dramatically reduced mortality. You've gotten what was promised. If you expected more, well, sorry for the disappointment.
I agree with you that variants may have changed initial studies. To echo what David said, where is the communication that public direction was wrong because of X, Y, and Z? Also why am I still being told to get boosted when I have never experienced disease that was worse than seasonal allergies? I am also young. Why is the public health message to get vaccinated still being shoved down the throats of individuals that aren't at risk?
I trust this messaging now about as much as I trust a street vendor on the streets of Rome. I am sure someone else will benefit from what is being sold to them but I am worried about getting pickpocketed and on my guard.
The point is that even if you are at low risk and maybe have a mild case is NOT the point! You need vaccination so more vulnerable people you know and interact with as well as those you don’t know have a decreased chance of exposure and development of severe disease. It is all about everyone else not you. If this was just about you then I could care less if if you get sick or die. But it’s not about you, it’s about others.
As an ED physician I put tubes into lungs of several people as a last ditch measure to keep them alive as they were suffocating with profound exhaustion in front of me, hoping that this might still save them. When I reflect that I was the last person to hear their voice and share their last few moments of consciousness on this earth, I still cry - and occasionally sob uncontrollably as I did most recently thinking about the most outspoken vaccine denier as I recalled the generations of beloved children and grandchildren he left behind!
It’s not about you - it’s about EVERYONE ELSE. If you think you’d be alive today without the day-to-day efforts of other people, whether you know them or not, throughout every day of your life then you really must be that stupid!
I am sorry for your experiences and I am aware of the damage done to people. However, please read my initial comment, specifically this part:
"My experience wasn't severe but it was still something I didn't want to experience again and got vaccinated within a week of eligibility due to the messaging. Several months later, after my son's daycare was dealing with an outbreak, I spread COVID to several people (5-6 I know of) despite the vaccine, prior infection, and not having any symptoms other than a headache. My family members that were boosted had far more severe disease than I did. It led me to think, why did I get this vaccine and why did they get boosted? Who benefitted from the vaccination? I certainly didn't and the people in my household/community didn't."
I should have added I wanted to prevent spreading to others like it was "advertised". I was vaccinated and everyone around me got sick - I wanted to do the right thing per Public Health Guidance and it changed nothing. Why should I trust what you are telling me despite personal experience being the complete opposite? Force feeding me "GET YOUR VACCINE" is no different than Musk Tweeting "PROSECUTE FAUCI" - I am not buying either of it without proof and evidence.
And instead of the Scientist community coming out and saying "here is what's wrong and why we are advising a new recommendation" the comment below by Stephen Strange indicates that it seems that most of the scientific community is too arrogant and proud to admit any fault in their role in Public Health policy during the pandemic. Seems like it just confirms scientists should have no role in public health policy and should just stay in their lane with regards to research.
"You've gotten what was promised.” Strongly disagree. The fact that the public (as opposed perhaps to knowledgable medical authorities and others with expertise) was misled initially is demonstrated by the shock of “breakthrough” infections. The widely accepted message had been not that transmission was “reduced”, but rather, substantially eliminated. The CDC should have been aware of that perception of the benefit - and known it was probably not accurate - after all tests had shown it wouldn’t be 100% efficacious - they should have proactively correcting that notion, so as to avoid distrust later. And they never acknowledged that initial impressions - regardless of who created them - were their responsibility to have corrected/qualified. And, knowing that flu vaccines are notoriously poor at preventing transmission should have been a clear signal that near elimination was totally unlikely in the case of COVID as well. Silence in the face of mistaken public opinion is also a failure of communications.
You seem unclear on the difference between seasonal flu and COVID. Perhaps a read through some of Dr. Jetelina's earlier articles could clear that up for you.
You also seem unclear on how science works, especially when confronted with a radically new virus (it's called the novel coronavirus for a reason). Nobody was misled except, perhaps, by their own inability or refusal to understand the scientific method.
Breakthrough infections were not a shock to those of us actually staying informed on events. They were especially unsurprising give the success of deliberate misinformation and propaganda campaigns by the anti-vaccine cult and its right wing enablers.
Your condescension aside, I was certainly “actually staying informed” and I have read everything Dr. Jetelina has posted on YLE. Nor am I unable or unwilling to understand the scientific method. The very fact that the media described the infections of those previously vaccinated as “breakthroughs” and were not promptly corrected by public health authorities with an EDUCATIONAL message as to why it was a misnomer is a testament to the poor communication. And, notwithstanding your snide remark, I am well aware of the difference between seasonal flu and COVID 19. Neither can be eradicated. But many people believed that these vaccines could virtually wipe out the disease -as in polio - and they were encouraged to think that by lack of education to the contrary. I fault the health authorities for that lack of guidance - and I believe no real such effort was made, because they felt it might cause confusion and make promoting the vaccines more difficult. This was typical of the “talking down” and “dumbing down of” the facts (and not admitting poor messaging) that the public was obliged to endure.
"Breakthrough infections were not a shock to those of us actually staying informed on events”. My point is that most people were not staying informed and those responsible for “messaging” should have gotten a better message out. And you are free to impugn my knowledge of science - but disparagement and condescension are exactly the attitude that created distrust.
No, the current attitude of distrust was created by radical right wing politicians and their enablers seeking to sow fear and distrust in our nation's institutions. Before you can tear down a nation's institutions, you must first discredit them.
The problem was not (and still isn't) that those in touch with reality didn't get a "better message out." The problem was that the message was shouted down by crackpots with bullhorns.
i read the initial Pfizer reports. apparently nobody in charge did, otherwise they would have been issuing a clear message of intent. the vaccine was never expected to prevent transmission, but to reduce severity.
In fact, the message was sent. That was the message I read in October 2020 with regard to the mRNA vaccines and a hope of at least 50% efficacy in reducing severe illness, hospitalization and death. In fact, we exceeded 90% in both vaccines, and had an additional and unanticipated benefit of a reduction of infections for the ancestral strain. With Delta, we saw sufficient mutations to promote evasion of existing IgG triggered by the vaccines. Thus, people who still had circulating antibodies were again at (reduced) risk for infection while those whose antibody titers had diminished or vanished were at greater risk. Yet, the cellular immune system continued to play a role in those previously vaccinated (or to a lesser extent in that period) or infected in reducing the severity of the illness.
That message did come out but I saw it countered by misinformation on platforms like Facebook, and even today on Twitter, completely free of attribution of their sources of information. Misinformation was allowed to circulate unchecked, while those of us "in the business" had to show our work when we posted.
Your complaints about communication gets a "Hallelujah" from the rafters. In fairness, though, public health didn't know how to do that a hundred years ago, and for a more recent example look at the HIV epidemic. Given social media and the fact that a segment of the US population took it as a badge of honor to nay-say the docs' recommendations the situation is, and was, bewildering.
That being said, the information everyone needs is out there. This blog is an example. The scientific papers are out there. Numerous social media sites curate and disseminate professional information and are very helpful explaining findings that are confusing.
I do not recall any health authority claiming that vaccines were being developed to prevent infection. They were developed to prevent severe illness. Clearly, there was always going to be an overlap between protection from infection and severe disease, because both are tied to the viral load. But I do not recall Fauci or others claiming that we could shed passive protection strategies with vaccinations because of protection from infection. That is why we health care providers continued to mask after receiving our COVID-19 vaccines. But again I understand why people may have been confused by words like protection.
Yes. My concern is that I have started to see the occasional spoonful of sewage in YLE comments from people who are clearly part of the right wing anti-vaccine cult. Gone are the days when I could read the comments here and not have to encounter a single comment that was little more than a farrago of unsubstantiated lies, distortions, and crackpot conspiracies.
I guess, in a way, that's in index of the growing awareness of Dr. Jetelina's work.
You make gross assumptions about people simply because they question authority. Elsewhere you insulted me, and I assume that you would peg me as a member of the "right wing anti-vaccine cult," but I have had three COVID shots (+ COVID!).
Some “cult members” are here but I you confuse the issue of genuinely misleading comments (there are some of course, but many not deliberate), and instead criticizing the poor communication that authorities provided with respect to the common disinformation. In order to make that criticism, it’s often necessary to repeat "the farrago of unsubstantiated lies, distortions, and crackpot conspiracies”. This discussion is not about the substance of the misunderstandings but rather the communication failures in educating the general public.
This is the kind of thing that drives many of us crazy: "I do not recall any health authority claiming that vaccines were being developed to prevent infection." Although *you* might not recall it, many of us do!
"The mRNA-1273 vaccine showed 94.1% efficacy at preventing Covid-19 illness"
To be clear, I'm completely fine with the fact that time has shown this to be inaccurate. That's science! And very happy to have a vaccine that mostly protects us from severe disease. But if you want to build public trust, you have to admit when mistakes are made and not pretend it didn't happen. We have the receipts!
These were serendipitous secondary effects. The goals were to create vaccines that would reduce serious illness, hospitalization and death. That part of the message was publicized briefly but when those same mRNA vaccines demonstrated an ability to neutralize initial viral load and prevent infection, the messaging, often in the hands of the media and well-intentioned "influencers" changed to something else and the original message was obscured.
I find the list of professions that scientists still rater higher than a little fascinating. ("Overall, trust in scientists has decreased throughout the pandemic, but ever so slightly. Interestingly it remained higher than public confidence in business officials, the military, public school principals, religious leaders, police officers, and elected officials.") What do they all have in common? They are in a position of authority and essentially get to "tell people what to do". Our country was founded on the idea that no one can tell us how to worship, what to say or what to believe. But in generations past there was still respect for what experts in their field said, because those experts had the education and knowledge base to speak from. But in the past several decades, we've been taught that OUR beliefs are somehow better or more important than those of the experts. We've been told to "do our own research" and somehow that has come to mean a quick Google search or mining social media for what we WANT to hear, not what the scientific or data based truth is. As someone who has worked in a hospital setting for over 20 years I've watched this play out at the bedside over and over. I agree that advocating for yourself is wildly important. But self advocacy is NOT using a Google search to "prove" you're "righter" than the expert. Self advocacy is about questioning things you think might be wrong and then having a discussion where both sides actually listen the each other and then fiond a way to come to an understanding of each other. And it feels as though throughout this pandemic, self advocacy has come to mean Google and social media, not actual research of reputable sites, not open and honest discussion. The same is playing out in our educational institutions at the same time. Expertise is being attacked by those who WANT to hear something less uncomfortable, less difficult. We've become a nation of self proclaimed experts. And I can only imagine how terrifying that is to the actual experts who are being attacked on a daily basis. I've seen the fallout of the "I know better" mentality: caring for patients in hallways because there are no rooms left, having to actually put our hospital on Divert (something we really never thought we'd have to do, but are now doing on a surprisingly frequent basis) due to lack of staffed beds, and patients we've built rapport with dying because they didn't beleive the science of masks and vaccines. I fear for our future. And I realize I've rambled. But a lot has been percolating in my mind for a very long time. Your missives help to keep it from boil;ing over too often, so thank you for that.
"But in the past several decades, we've been taught that OUR beliefs are somehow better or more important than those of the experts. We've been told to 'do our own research' and somehow that has come to mean a quick Google search or mining social media for what we WANT to hear... As someone who has worked in a hospital setting for over 20 years I've watched this play out at the bedside over and over."
A significant minority of patients will not get an accurate diagnosis unless they do the research themselves, a minority large enough (up to 1 in 10) that the majority of Americans might know someone who had to do this. The problem is not the science. The problem is mainly healthcare providers too strapped for time and other resources to *do* the science to their patients, providers who find themselves relying on snap social judgments with their biased heuristics instead. This is mainly not providers' fault: providers often work under constraints – too little time, specialties so siloed that "biopsychosocial" gets treated as bio OR psycho OR social (exclusive OR), defeating the biopsychosocial model – that defeat providers' ability to listen to patients and come to an understanding.
I belong to a patient community whose problem (EDS) is well-documented by medical science, but diagnosed as if it isn't – which is to say, rarely diagnosed correctly, especially in non-white-male patients, despite there being a cheap, low-tech screening tool (Beighton scoring – which won't work if no provider tries it). Self-diagnosis – or even accidental diagnosis by an acquaintance – of EDS is common. And EDS patients aren't special: this is how medical care works for many patients, even the fairly scientifically literate and trusting.
When mainstream providers fail patients, it's often through social, not strictly scientific, error. Medicine is a social enterprise, subject to resource limitations prompting biased heuristics. Since medicine is a scarce resource, gatekeepers must have some power to dismiss cases they find unconvincing. Too often, patients find themselves dismissed for being socially, rather than scientifically, unconvincing. Social inference is so fraught that betting that established medical science is wrong can seem safer than betting that you won't be dismissed by mainstream gatekeepers.
That's how I, fairly scientifically-literate, with little interest in alt-med, found myself provisionally accepting a "chronic Lyme" diagnosis from the alt-med provider my family persuaded me to see, who I'll call Dr Lyme. More than a decade after I met Dr Lyme, a mainstream geneticist correctly diagnosed me with EDS. No doctor had considered EDS until I self-screened and requested testing for it in my thirties, after, by sheer happenstance, I had met someone who said I reminded her of a friend with this thing called EDS. If outdoorsy people have EDS but doctors don't rule it in, attributing their symptoms to Lyme-based malaise may seem more plausible than other, more mainstream explanations, like SSD (Somatic Symptom Disorder, in the DSM-5, so mainstream, though judged problematic even by leading psychiatrists like Allen Frances, who chaired DSM-IV).
Patients who fall for pseudoscience may be acting reasonably, not because pseudoscience is true, but because they've had mainstream medical encounters so unreasonable that pseudoscience seems reasonable by comparison:
The more invisible your illness, the harder you must signal that you're not malingering to avoid dismissal. (I'm using "malingering" in a broad sense here, as needlessly persisting in burdensomeness, whether consciously or not: that sense, not the technical one, describes the dismissal leading to misdiagnosis better.)
Signaling that you're not malingering involves conspicuously fulfilling your duty to wellness by faithfully disciplining yourself with whatever care is available to you, even if it's dubious. Others' expectation that you do something to get better is stronger than their expectation that you choose a something that makes sense. Flaky efforts to get well are at least efforts. To turn up your nose at some suggested effort is to show bad faith, to signal that you don't really want to get better. Medicine isn't just a scientific, but a disciplinary process.
Oxford medical professor Trisha Greenhalgh quipped,
"Doctor: Don’t confuse your Google search with my 6y at medical school."
"Patient: Don’t confuse the 1-hour lecture you had on my condition with my 20y of living with it."
The problem with only an hour's worth of medical education isn't the science, it's *not enough* science. But resources are so limited that an entire hour's worth of education on rarer diseases is actually a lot! Where would you fit them all if more time were spent?! And "There are nearly 30 million people in this country with rare diseases. Otherwise put, 1 in 10 Americans head to their doctors’ offices with diseases likely to be unfamiliar, diseases almost sure to lead to diagnostic confusion."
When 1 in 10 Americans risks getting unscientific dismissal from mainstream medicine, most Americans will know someone who's been ill served by mainstream medicine, perhaps several someones. This isn't science's fault – but can we be surprised when many people infer it is?
You're right on! Communities across the country have to tackle this issue. Example: a dear friend who only has a high school education tried to convince me that vaccines basically change your body at the cellular level. I gently asked her why she believes that. She replied that friend had told her she read it on the internet. I asked her what proof she had of this. She paused and said she didn't know, but her friend wouldn't lie. I said I wasn't calling her friend a liar, I was questioning her proof of this as she was claiming this as a fact which I had never seen. She paused and asked me if this was misinformation. I said it was. (She knows I read extensively in this arena.) I said it is really important to look for the scientific proof before condemning something that saves lives. I am tired of dealing with all this bogus info...as I am sure you are...and I think this has to become Public Health Job Number One...get the conversation open regarding How do you determine if something is fact or not. ( Sorry for the long post. ) Thank you for doing what you do!
I had a similar conversation with my dad (81)...I walked him through the reasoning step by step until finally he figured it out for himself. But that’s the issue, we do t have resources to walk 150 million people (roughly half of the US population in the 2020 Census), through the steps of reasoning through a problem. We either aren’t teaching it correctly in school, or people just willfully ignore it because...rights...
So many of our victories in the misinformation arena are one-on-one encounters, and these are not sustainable. There's not enough of us to counter all the misinformation that's out there.
Katelyn, good article and no easy answer to the Elon Musk's of the world who have such outlandish reach and in this case does harm to our nation as well as our profession of Public Health.
I am confident he is truly ignorant regarding Public Health history and pathogens causing Pandemics.
Many of the TV news spokespersons painted Dr Fauci as "The Nation's Top Doctor).
He has had an excellent career but he has become the target of politicians and right wing news for not having all the answers and rapidly ending the pandemic. No easy answer but commision for Public Health would be a great start if Bipartisan.
I don't know how to build an electric car company (or want to be a Billionaire) nor does he know public health. Pointing out the obvious ... that he is speaking out on a topic where his success in his life has not made him a public health expert but has allowed him to take for granted societies public health accomplishments over the years.
Regarding the issue of interpersonal trust, vaccination etc, my suggestion is ..... look to Mexico. Mexico is a mess politically, but there is virtually no vaccine denial. People do not trust the government with good reason, but they do trust each other. Thank you for your continuing contribution to public health.
Communication is so vital. Science and tech types often think they know everything, including how to communicate so the message is heard by all sorts of audiences. They don’t. (English major married to a mechanical engineering major for over 30 years, plus I spent my career writing tech manuals.) The medical community needs to decide what message they want to send, then let people trained in communications do the talking. For me, the messaging throughout the pandemic (but especially in the beginning) was severely lacking in cohesiveness and anticipating what different audiences might ask. Even now, many people believe the vaccines were created “overnight,” because the message that the technology had been developed over the last decade wasn’t communicated. Compare it to something the average person can understand, e.g “it’s still a car, but we tweaked the styling.” The messaging on masks was doomed when the first direction on masking was that it “wasn’t necessary.” People are left wondering who and what to trust when messaging keeps changing, and they found stability with the outliers who clung to incorrect information no matter what.
You are so right. Consistent messaging is crucial. The challenge we have (and had during the throes of the Pandemic) is the lack of cohesion amongst the various national, state, local, and community health organizations. Hell, even the CDC had internal communication issues. Our country is so large and so diverse, I don’t know if there will ever be the possibility of cohesive messaging. Throw into that challenge the huge gap in educational opportunities among underserved and marginalized communities (both urban and rural), and the voices that simply utilize the “yell louder” approach to messaging, and those that need to understand the problem, andthe path to addressing it (masks, distancing, vaccines), are well and truly screwed...by their own volition. People are not learning critical thinking, problem solving, and science during their school years...and it shows.
I appreciate what you are trying to do here. I do. But as a medical student of the early 2000s we were also told that no one should be in pain, treat pain aggressively and if we don’t we are bad doctors. People cannot become addicted if they have true pain. There were “studies” to back this up… We have to continue to question the motives and the policies of our government and our public health system. If we do not, people die. We have an ongoing opioid epidemic to prove this.
Let us not forget that the cdc originally told the public that masks were not necessary. This was not true, doctors knew this. But we needed to say this to prevent panic and preserve PPE for the medical community. Was that the right move? What if instead they came out and said we need to treat this like a war-time emergency? We need all people who have masks to drop them off so that the medical community can go to war against this virus.
So now everyone is questioning Fauci. He will be the scapegoat for the science community. I stand behind him as a physician having to make extremely difficult decisions to protect the lives of many. No question. That is what doctors do. But at the same time, the cdc is also telling people to believe that a a specific type of virus naturally appeared in one of the only cities in the entire world that happens to study these exact viruses. When you hear the sound of hooves…. This is no zebra.
If we don’t question it, we cannot make policies that will truly protect the public. If we cannot admit when we made a mistake, more people will die.
Such a hard balance between questioning authority and trusting/obeying authority - you are right that too much of one or the other is a real problem.
As someone that has family that is now struggling with pain from severe scoliosis and drug dependency, this truly resonates. Great analogous example of why health shouldn't be a policy driven but rather a holistic individual approach.
"Let us not forget that the cdc originally told the public that masks were not necessary" How about we fact check that sentence? https://www.reuters.com/article/uk-factcheck-fauci-outdated-video-masks/fact-checkoutdated-video-of-fauci-saying-theres-no-reason-to-be-walking-around-with-a-mask-idUSKBN26T2TR and https://www.factcheck.org/2021/02/scicheck-video-wrong-about-fauci-covid-19/
And in general: https://www.science.org/content/article/almost-everything-tucker-carlson-said-about-anthony-fauci-week-was-misleading-or-false
Thank you for posting an article that proves my point. As an infectious disease expert, Dr. Fauci knew that to protect anyone from a potentially communicable disease one should wear a mask (and gloves). This is standard protocol in all medical settings. As a physician myself, I am saying we knew this as well. We also knew that there were no masks. I was part of an organization that was trying to find PPE for hospitals across the country. I do not think that Dr. Fauci said this with malicious intent. He did this to protect from hoarding and panic. His intentions were good. His medical decision making was heroic. At the same time, he was trying to protect the science community and his organization with some of his other decisions. I doubt these are actual crimes. But if we can’t discuss what actually happened we cannot prevent mistakes in the future. If people keep trying to post “gotcha” posts in an attempt to shut down discussion, we will not make progress. In order for the CDC to regain trust, they have to be open and honest about why they did what they did.
I should also add that I have never even watched Tucker Carlson so no need to try to equate my comments to his.
I am a physician. I believe in science. I am terribly disappointed in public health and policy--often to the point of despair. The decision to make NPI for the pandemic personal decision and then not adequately educate people has led to excess deaths. I abhor the CDC and that is a huge disappointment. I think this is a deeply polarized country where people are just spoiling for a fight, but for public health to not follow the science, but to follow politics makes me so disappointed and skeptical.
Apologies for seeing this so late, but I felt I had to respond. I grew up wanting to be a CDC researcher and detective but life worked out differently. Over time, CDC has changed from the organization I saw as a student in the 1970's, in part (significant?) due to the transition to a politically appointed director, instead of a long-term professional, who really should be segregated from political pressure. To put a point on things, Robert Redfield was not the CDC Director they needed at that time, nor, in my opinion, was he ever suited for that role. Further, efforts to reduce funding and politicize the agency saw the departure of a significant number of older, and generally extremely experienced personnel, most/all of whom were capable of speaking truth to power (at least once, until fired).
Public Health, overall, didn't intentionally fail the messaging problem but we faced issues with the amount of data coming in, and how to address the misinformation flood that also occurred. And misinformation poses a serious issue: It doesn't have to be vetted and verified, while real public health data does face that requirement. Consider the amount of data YLE must review to put out these rather comprehensive missives, along with graphics. I can speak to the amount of data I have produced for the rather large non-profit I support. Every recommendation had a citation, or, if it didn't was expressed as opinion but with a rationale included to allow evaluation.
During the busiest periods of the pandemic, especially from March 2020 through about May 2021, I saw so much material, read and evaluated the research based on the reports, I could easily start with a solid opinion of the state of science at 9am, but by 3pm I might have had my entire paradigm shifted on potential treatment, or, say, droplet vs aerosol, or hydroxychloroquine as a useful modality or not. My ongoing discussions with clinicians led to positive information on what did and didn't work in the ICUs, and I was among the earliest to consider, based on clinical data that SARS-CoV-2 was actually a vascular invasive virus, rather than purely acting in the lung. I helped spread that information among my network of researchers and clinicians, but in no way was I the sole originator. It was a group effort in PH to make leaps like that.
CDC over time has become a more academic institution. Rather than, as an agency, leading from the front, they amass evidence, analyze it carefully, and eventually issue a report. Note, for instance, the May 2023 recommendation for air filtration and exchange... over a year after that was recommended in literature. If we understand their mission is to reach a science-based conclusion as an epilog rather than throwing ideas out for random trial, this makes sense, and it's important we have such an organization. Forensic and careful study is important. But the PH professionals out in the community were the real heroes and unfortunately, the PH professionals in the field have seen reduced funding, loss of authority, and during the pandemic, politicization of their messages. I can say that the Governor of Oklahoma took particular interest in the weekly summaries of COVID information published to the public, to an extent he'd never exercised before COVID, because he wanted to make sure the "right" message (and numbers) were conveyed. "Right" didn't always equate with accurate but he was seen as promoting a position statement claiming the health effects of the disease were overstated. The Staff Epidemiologists I interacted with were less than pleased, but anything they wrote for public consumption passed through a political filter before release. It should be noted that FDA and CDC, at the Federal level, had the same requirements at several points in the pandemic.
Ads to submitting to the whim of politics, effectively declaring the pandemic over, I must agree. "The Science" is only starting, by mid-May 2023 to look like the disease is waning, and we might be seeing a return to some form of normalcy. I say that recognizing we're still seeing 1000 or so deaths per week related to COVID-19, and that we're seeing a plethora of variants reveal themselves routinely. But even there, we're starting to see older substitution/deletion events resurface, and we're seeing recombinant variants emerge; some are quietly suggesting we've run out of unique substitutions and variants are recycling, looking for an advantage again. Another reason we're seeing fewer cases, in my opinion, is the lack of testing. A long time ago, doing clinical research (or maybe even before that in my life as a paramedic) I learned that, in order to find a fever, one must check a temperature. And President Trump did state that we'd have fewer cases if we stopped testing. I offer that's where we are.
Public Health policy is a different matter. That's often decided at the State level, and there are plenty of legislatures who want to prevent the "errors" of the pandemic... also known as established public health processes... to never be employed again. I've little doubt the next aerosol outbreak will see a lot of those suddenly be reinstated, but because of state laws, they will in fact also see legal battles ensue, and a lot of polarized wailing and gnashing of teeth.
My little slice of Public Health has indeed followed the science as I was trained to view it. I hope, in the future we continue to do so.
If we’re going to restore trust we need to start with an elementary school program that teaches critical thinking skills. These are just as important as learning to read or do arithmetic.
Absolutely agree - but would bet that would generate "debate" about how to detect and avoid bias in a school program part of which is about how to detect and avoid biases. Yet there are some biases I'm pretty sure everyone would agree are, such as regression towards the mean and selection (volunteer) biases
Katelyn - Curious where you side in the debate on viral Gain of Function research?
Do you support the views of Ralph Baric, Peter Daszak, Shi Zengli, and Anthony Fauci that it is useful to create chimera viruses which don't exist yet in nature in case someday they do exist in nature? Should we increase in the transmission and/or pathogenicity of potential pandemic pathogens in labs in order to potentially develop therapeutics as they argue?
I think this is where the "prosecute/fauci" tweet comes from, as each day more evidence comes to light that the lab leak is likely, and while Fauci was only tangentially involved (funding a small amount of money), off camera he was shoring up opposition to even exploring this hypothesis which we only learned of years later through FOIA requests.
He was duplicitous in 2020 when in his public facing role he acted like this was an absurd conspiracy theory for quacks, but behind the scenes was organizing the very people involved in this research to get their ducks in a row and publish papers guaranteeing it was natural origins (just look at the history of how the Proximal Origins paper came about) - then back in public facing pretending he had no involvement in those studies and they were just a product of science.
Then, Fauci, with the support of our government, got social media companies to suppress and censor any discussion of the lab leak hypothesis for over a year. He likely perjured himself in May of 2021 (though I truly believe he was ignorant of what was initially going on - he's high level and can't always be in-the-weeds).
I assume Musk got even more details on how the sausage was made in suppressing the lab leak through acquisition of Twitter and prompted this tweet.
What I don't understand is how the left (which I am a part of) is giving Fauci a complete pass on this when every FOIA request, every new piece of information, continues to make it very likely the virus was created in a lab, it did accidentally leak (as is somewhat common), Fauci realized our ties to the lab, realized he was on record for supporting this type of research, and did everything he could to shift focus to natural origin and halt any discussion considering a lab leak.
EVEN if it was natural origin, his actions behind the scenes in 2020 were unethical and not in the spirit of science.
A while back you posted some questionable statements, ignored requests for evidence, and generally made me wonder what your agenda might be. After seeing the raft of crackpot conspiracy substacks to which you subscribe, I wonder no longer.
Would you please cite the questionable statements I have made where I ignored requests for evidence? It might be tough to sort through old comment sections and topics, I get that, but I do keep a database of comments I make on substack so have posted a few below - are any of those the ones you are thinking of?
As for "the raft of crackpot consipracy substacks I subscribe" - does that include Eric Topols Ground Truths? Or perhaps "News from those Nerdy Girls"? Emily Osters "Parent Data"? Stump MEEP on Mortality? Matthew Yglesias' "Slow Boring"? The Unbiased Science Podcast - perhaps? Caitlin Rivers Force of Infection? Privatdozent who covers the history of math through photos?
I concede for every one of those I have 10 "Steve Kirsches", but that is the base rate of Substack. In addition to the hundred+ substack subscriptions I also subscribe to the New York Times, Washington Post, New York Magazine, Wall Street Journal, National Geographic, American Family Physician, The Local (Scandanavian newpaper), and probably a dozen other publications I can't recall. I like to read from as many diverse viewpoints as I can. Plain and simple.
Here are some previous comments I have made to KJ - please let me know if these were where I was requested evidence and ignored it, if not if you can remember as much as possible of the context I am sure I can dig it up for you.
(Suggesting YLE digs into what is happening in Vermont closer)
https://yourlocalepidemiologist.substack.com/p/state-of-affairs-europe-should-we/comment/3633256?s=r
(Request to explore why asian countries are overidden with Covid)
https://yourlocalepidemiologist.substack.com/p/pandemic-preparedness-s-korea-vietnam/comments?s=r
(Rexamining the Der Spiegel article YLE posted on 11/15/22 which was quickly falsified)
https://yourlocalepidemiologist.substack.com/p/omicron-update-nov-29/comment/3827583
(Asking YLE to consider 9 issues with he Pediatric State of Affairs)
https://yourlocalepidemiologist.substack.com/p/pediatric-state-of-affairs-april/comment/6293222
(Fantastic back-and-forth with commenter all-stars KB and Garry Creager)
https://yourlocalepidemiologist.substack.com/p/a-note-and-q-and-a-boosters-for-5/comment/6761695
(Suggesting YLE considers the Viral Interference hypothesis) https://yourlocalepidemiologist.substack.com/p/the-common-viruses-for-our-kids-may/comment/9248722
(Commending YLE for consdering viral interference hypothesis but correcting her on why surgeons wear masks)
https://yourlocalepidemiologist.substack.com/p/the-state-of-covid-and-the-triple/comment/10895219
Any of those where I ignored requests for evidence Stephen?
How about we deal with the conspiracy narrative you just posted? Here's why it's rubbish: https://sciencebasedmedicine.org/the-rise-and-fall-of-the-lab-leak-hypothesis-for-the-origin-of-sars-cov-2/
Stephen, aside from me framing lab leak as "likely" in my question to Katelyn - what part of my original comment is conspiracy? I am commenting on things that actually happened.
Can't reply in much detail today, but can get back to you tomorrow.
For what it’s worth, both former CDC Director Redfield (a trained virologist) and former White House Coronavirus Response Coordinator Birx are both on the record that the virus was a lab leak.
Redfield isn't particularly credible. Birx, to my knowledge, remains open as to the origin. Of course that's several months past your comment.
Yessuss, Marya, and Yussuf !
Stephen and Michael, you have me convinced, at a quite old age, to turn to religion as an alternative to science.
Enough already.
And by the way: https://sciencebasedmedicine.org/the-rise-and-fall-of-the-lab-leak-hypothesis-for-the-origin-of-sars-cov-2/
If you were interested in reality, you would benefit from exploring Science Based Medicine in more detail. They have a pretty good selection of articles on epidemiology https://sciencebasedmedicine.org/category/epidemiology-2/
I've read science based medicine for years, and of course have read that article and Dr. Gorski's previous writeup in May of 2021 denouncing it as a conspiracy theory. I was probably still thinking it was a conspiracy theory around that time too - my view only started to change once I learned that the whole time Facebook was suppressing any discussion of it at behest of the government did I start to take a second look.
Consider this passage from Gorski:
"By by May 2021 it clearly had developed all the hallmarks of a conspiracy theory, complete with a coverup narrative in which China and powerful forces in the US were “suppressing” all mention of a lab leak as a “conspiracy theory”
How did that age now that we know in fact powerful forces in the US were suppressing this?
And I am not even saying "this is what happened". I am pointing out that we now have evidence that Anthony Fauci went out of his way to ensure that the natural origin theory became dominant, suppressed the lab leak discussion, and labeled anyone who disagreed with him a conspiracy theorist while FOIA records show he was worried of lab leak himself (and I would be to if I had been on record supporting Gain of Function research for the last 8 years and had funded it).
What I am interested to know from Katelyn is not her thoughts on lab leak. I am interested to know in general, does she support viral Gain of Function research? Is this a good idea, as Fouchier, Baric, and Fauci believe, or, are the risks not worth the rewards as argued by Ebright, Lipsitch, etc.
I find the arguments outlined by Yamauchi here compelling, curious your thoughts?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7119956/
Yes, but....
Enraging the 'iggerant' masses is hardly an approppriate tool with which to build boundaries around Medical science. .
First, I want to say thanks for the work you have and are doing. I have spent my career as an emergency physician, now as medical director of a health department in a small rural county in North Carolina. I have no public health background, so once I discovered your work, it has been invaluable. Thanks
I hope you’ll be able to take a few moments to hear these comments. They also come from my experience as a coach working with doctors burned out and/or struggling in their beaurocracies, as well as what I learned following a professional catastrophe by researching and writing a book about what leads a person to make the decisions they do.
I’m going to be a bit provocative here. I don’t think we in public health should focus on the goal getting people to trust public health. It's certainly possible, but not really in our control. Feeling responsible for something out of one’s control is a recipe for frustration.
What we can do is give people the opportunity to trust those of us in public health. That is in our control.
And I don’t think the ‘mistakes’ we in public health have made were mistakes at all. Here’s what I mean. It seems in the face of so much uncertainty, people fell into one of three camps. 1) Looking for ‘answers’ and trusting those with more expertise; 2) Looking for ‘answers,’ not sure who to listen to, but ultimately deciding to trust those with more expertise; 3) Looking for ‘answers’ and in the absence of hearing anything that resonated, instead looked to connect the dots in a way that was plausible enough as a guide to act on.
Our brain’s main job is to decide what the next step is going to be in the face of the uncertainty we each live with each and every day. What task should I do first? What’s the weather really going to do today? What do I do for my kids today? On and on and on, not to mention local, national and international issues.
People are used to hearing the ‘answer’ from science- usually hearing it once the groundwork has been done, mostly out of sight until enough has been done to draw conclusions. But this was very different. Science was evolving in real time. It illuminates how difficult it is for many to live with the uncertainty of evolving science. Those in the 3rd camp have not been able to at all. In truth, science never had a chance with these folks. Science was unable to provide the very thing they were looking for- a certain ‘answer.’ They viewed the pandemic as a problem to be solved rather than what it really is- a dilemma needing a strategy for how best to respond. And when the given ’answers’ either didn’t pan out or had to be changed in the face of a changing landscape, their only recourse was to blame someone for getting it wrong because, well, their ‘answer’ was wrong. And so it had to be the ‘expert’s’ fault. Searching for a solution when the issue is a dilemma is a frustrating dead end.
It was also revealing to me that our decisions largely- and value judgements for sure- take place outside of awareness, in what Shankar Vedentim calls the Hidden Brain (HB)- processing we have no insight into and no idea is going on. It starts from a person’s worldview- the way they believe the world works and the ‘rules’ they use to navigate this- a product of genetics, upbringing and experience. Think about someone who views the world as a glass half empty vs a glass half full; or an optimist who always sees the opportunity vs a someone who always sees the way it won’t work. This worldview forms the lens through which we interpret the data our senses tell us and from which the Hidden Brain forms a story to explain what’s going on. And this is all happening outside awareness. We just do not even know this is going on or even realize we have a worldview that underpins decisions and choices.
And the HB does not communicate in words. The story is passed to the aware functions through feelings, emotions, intuitions, and it is there we attach words, numbers and descriptions in order to share it and ‘think’ about it. When we have a belief, it is not the product of having ‘rationally’ considered the factors in making these value judgements. It is a product of hanging the ‘facts’ on the scaffold of a worldview to form that story. And the default approach of the aware brain is to rationalize, justify, and defend the story, ignoring, dismissing or overlooking that which does not support it. I liken that to the job of a press secretary. It’s just easier to do that. And we are not even aware of that. We think we have thought through and made a reasonable conclusion. This is why facts do not change a mind not open to receiving the facts. Our inner press secretary is just that powerful.
We do, however, have the ability to think things through, embrace the data that becomes apparent and reflect this back to the HB; it’s just takes a lot of brain power to do. In any event, it is the HB that decides whether to amend the story, again outside any awareness, and balanced against that worldview. We can change our mind- but this takes a catalyst- something really impactful that makes it clear that maybe the current story is not the best one available to explain what’s going on and upon which to base choices. And a catalyst cannot be manufactured. It is only in looking back that you can say something was a catalyst. And our stories are so closely tied to self image and self worth, it takes something pretty significant for our minds to be willing to spend the energy to ‘rethink’ the story.
So if I expect to regain trust, this suggests there is something I can do to be that catalyst.
And that is not possible.
What I can do is to provide an opportunity. The person can take it or not. I cannot tell you how many groups, elected officials, school boards, pastors, angry public I have stood before during the pandemic absorbing the negative energy- as we all have for sure- some able to grasp my feeble attempt to put their concerns into the context I have tried to describe above; most not ready. I cannot count the number of phone calls and emails from concerned fellow citizens asking for advice- true for all of us- appreciative because they trusted me with guidance in the face of uncertainty. Was I always right? That didn’t matter as long as it helped them to choose their next step.
What I think I have learned is: try less to depend on regaining trust, and more to support people to take their ‘best next step’ given what is known at the given moment in the given circumstances. I think this means supporting people to frame their issue in a way that they can make use of the data that is known at that time to gain ‘enough’ certainty in the given circumstances to take the next step that seems best. In the end, that’s all people really want and need.
And by their experience about how it worked out, perhaps that gives further credence to group 1 to continue trusting, to group 2 to decide where to put their trust and maybe group 3 to experience a catalyst to make it worthwhile to ‘rethink’ their story, and over time, enough group 3 people do that in favor of trusting public health that it is no longer acceptable by most of the others to not believe that way.
As an evangelical pastor said to me after many conversations: “I hear stuff different from what you are saying, but I believe you because you’ve never steered me wrong.” Truth is I never steered him at all. He made his own choices; I just helped him frame his issues.
It’s a long road, but if we in public health are to sustain and survive, think of ‘regaining trust’ as an aspiration- something we hope can happen, but when it does not, not feeling like we have failed- and instead focus on supporting people in their decision making- an expectation we can live up to; whether the person takes the opportunity or not is something only they can do. That’s a lot less draining, and we can save our energy for where it’s best deployed, and be ok with living with the consequences because as you say, when it comes to a virus, we are all in it together.
maybe, just maybe …..
Thanks for hanging on to read all this.
Sorry if I have just repeated stuff you already know
I’ll be interested in your thoughts.
Respectfully,
Mark Jaben
As a note to other readers, Mark Jaben has a book available on Amazon, "Free the Brain" that looks like an illuminating text. Note, this is an unsolicited endorsement: I don't know Mark or any of his associates, nor does he know me! I just like books. 🙂
You wrote: "What I think I have learned is: try less to depend on regaining trust, and more to support people to take their ‘best next step’ given what is known at the given moment in the given circumstances."
Sure, but the coercion of COVID vaccine mandates do no lead to people agree that their compliance is their "best step" for their health, but instead the best step for them to keep their job or stay in school when the don't really want to take the shots.
Declining trust in public health has resulted in far fewer people getting COVID booster shots, as Katelyn has pointed out. That is seen as a problem since not everybody is being coerced by a mandate or willing to take a bribe to accept the vaccines.
When COVID vaccines were first release, people rushed to cut in line to get them before other people. People belived much more in public health in 2019. Now COIVD vaccines are going unused, and people are not rushing to get booster shots. The shots, plus the policies and the science surrounding the shots have led to most of this loss of trust, in my opinion.
You have used some rather inflammatory statements in this comment that I'd like to work through. It's pretty obvious you're not a fan of the vaccination program, and I'm interested in why.
I'll offer that there has been a systematic attempt during the COVID-19 pandemic to erode trust in the public health structure from a number of sides. Loss of talent at CDC did not help them provide their best messaging, which led to problems early on. Loss of the CDC and NIH teams in Wuhan meant we did not have on-the-ground intelligence to provide more data, meaning our early information was solely shaped by what we got directly from the Chinese government (not much) and surreptitiously from sources within the Chinese medical community, often with them fearing reprisal. On the other hand, there have been social media and popular press posts that misstated facts or made significant efforts to make early statements seem to mean something not stated.
I've been a scientist all my life, and my language tends to be precise. Sometimes that also means the interpretation is nuanced. However, if I tell you the goal for a vaccine is reduction of serious illness, hospitalization and death with a target efficacy of greater than 50%, that has a specific meaning. Note that nowhere in there is a statement about preventing illness or transmission. In fact, the mRNA vaccines well-exceeded the target efficacy and met the goal, with an added benefit of reducing illness and shortening disease course (and thus transmission) *FOR THE ANCESTRAL WUHAN STRAIN* of the virus, which was the published genome (we have not, to my knowledge, gotten samples from China of the original viral agent) all of the vaccines save, perhaps, the Chinese vaccines were developed from.
The amount of data we've had to consume, interpret, and form coherent opinions on has been tremendous. I recall seeing a statistic, which I fear is optimistically low, that over 300,000 unique research articles had been published regarding COVID since January 2020. No individual, and no reasonable committee could read all of those, so we have individually, or organizationally focused on articles that were consistent with our mission(s). For me, this meant focusing on a broad picture of COVID, and as detail emerged, effects on pediatric patients. I've had to form recommendations for a large volunteer organization with a youth element and an adult element, with meetings, training sessions, and gatherings including summer and winter camps. I was interested in spread, duration, transmission, and mitigating those with both pharmacologic and non-pharmacologic means. Because of the volume of information my opinions changed frequently, sometimes several times within a day based on the studies I read reports on, and those I evaluated as well-designed and performed. This didn't mean my advice on, e.g., vaccines was ill-formed or contradictory. It meant I was willing to change my position, and state that I'd changed and why, based on available evidence.
I would like to hear your reasons for the rather inflammatory discussion of vaccine mandates, and likely vaccines in in general.
I just got around to reading your comment. You sound like a well-trained open-minded scientist with excellent thinking skills who argues at the highest level of Graham's Hierarchy of Disagreement and Internet Arguments. Keep it up. You probably realize attempting to convince the inconvincible can lead you down the rabbit hole, trying to prove a negative, etc. As you imply, using the best available data means one's view may change when better data becomes available.
Thank you. I've spent a lifetime learning to be a scientist, and I'm still learning. Considering the areas I've worked in, learning to argue my points successfully has been a requirement, as I've wandered into a couple of areas where I came in a little light on extensive formal training. How I've succeeded has been a long, and continuing story.
This encapsulates almost everything I've said, but piecemeal, over the last 3 years. Mark, thank you.
Thank you for being such a strong voice for public health science. It would be interesting to know how other fields of science are perceived by the public- NASA, green energy, seismologists, etc. My sense is that NASA does a good job of communicating as does Dr. Lucy Jones in disaster preparedness. Dr. Fauci is, of course, a national treasure as are you. Thank you for translating scientific data into layperson's language.
Good points Lucy. Virtually all of today’s post applies to climate science, doesn’t it.
Absolutely! And read my post. That denial has been fostered by Republican politicians and still is - now their story is “it’s happening, but it’s not driven by human behavior”. Because too many people can see that climate change is real but the reason is it is still not widely accepted and is “debatable”.
If Government has no idea what they've done wrong, I'm not sure a "listening session" will help.
In order to repair public trust, Government must:
1) Take RESPONSIBILITY, as in "we did this, and it was wrong;"
2) REPAIR the damage they've cause, such as pay back wages to those who lost jobs due to vaccine mandates;
3) Do whatever it takes not to REPEAT past mistakes.
In clinical settings, say, after a resuscitation, I like to gather the team and ask 3 questions:
1. What did we do right?
2. What did we do wrong?
3. What did we learn, to improve next time?
I did this regardless of outcome. It was a ritual but caused us to learn things.
I think it is literally vital for survival of civil society (and in the face of global warming - all of us) to take your and Oxford's excellent analysis one step further. In their prescient book from 2010, THE SPIRIT LEVEL, Wilkerson and Pickett, two English health epidemiologists relate many parameters of societal morbidity (including trust), both internationally and among all US states, to levels of INCOME INEQUALITY. This analysis was reinforced by a 2016 paper "Growing Apart, Losing Trust? The Impact of Inequality on Social Capital" by Eric D. Gould and Alexander Hijzenfrom written in 2016 for the IMF.
It is quite apparent to everyone that the USA is living through an unprecedented period of income and wealth inequalities and disparities. While the pandemic induces fear and irrational responses on an intimate personal and family level, income inequality systemically disrupts civil society - societal and governmental institutions - creating systemic and environmental malaise, alienation, insecurity and deeper fear. The power of the very, very wealthy distorts legalities, politics, industry, governance, communication, employment as well as faith, hope and trust. No wonder people are acting bat-shit crazy in the public square. MAGA is a symptom not the disease. DeSantis is an infectious agent, not a commensial politician.
Primary prevention in this case means disrupting our passive "politics as usual" to stop the government supported robbery and redistribute resources to people and civil society. The American Rescue Plan by President Biden was, in fact, an unprecedented, revolutionary approach to government in these times of need - and it worked. Alas, few people realize this (AOC and Sen Warren, Thomas Picketty do) and an articulate politics to both fight the pandemic and monopoly wealthy has yet to be born. The first step in finding a cure is to know the origins.
Well put.
"Infectious diseases violate the assumption of independence—what one person does directly impacts the person next to them.” This concept seems to me to be the most basic and the least accepted of the entire COVID experience. The idea that we don’t have unfettered freedom to do what we individually want frequently has a deaf audience. Poor analogies were made such as mandatory seat belt wearing - which in itself had a significant negative reaction when it was introduced. Comparisons to stopping at stop signs and red lights would have been better. Of course unscrupulous politicians taking advantage of public fears and the innate selfishness in most of us - to a greater or lesser degree - hasn’t helped. This notion of common good should draw upon existing, largely accepted rules of appropriate behavior. As for diminishing trust in science and medical science, one need only look to lack of vaccine compliance that had been creeping into the mainstream more and more, even pre-COVID. And climate change deniers. The Republican party has led the way on these issues of denials and I will never vote for one again unless he clearly supports the science and walks the walk. As for communication and trust in the CDC et al, the lack of confidence has been fostered by the unwillingness of those bureaucrats to admit their (sometimes stupid) mistakes. Like the WHO first telling us that it was spread by contact and then - only after the beseeching of hundreds of scientists acknowledged not the basic truth and a mistake on its part, but put out a lame qualifying statement that COVID “might” be spread through respiratory exposure. This is the sort of thing that just leaves people - well educated or not - with no confidence in public health organizations. Talking down to people, as well, is a serious problem as it offends and turns off people to even listening. Admitting to ignorance and explaining the “why" of the ignorance - not enough data - would make reversals of advice more widely forgiven and accepted. We should also overhaul the FDA et al, which were (laudably) created to protect the public from dangerous drugs and inculcate an attitude that permitting new solutions to significant crises and major problems of disease shouldn’t take so long. Cost/benefit analysis is too slanted to delay and caution than to actively trying to solve problems that impact a whole society and are urgent.
Katelyn - thank you for all the time you commit to these articles. Been a reader for many months.
Speaking from personal experience, I think the motives behind the decisions throughout the pandemic are eroding the trust. One thing that needs to be done is direct conversation with people that are losing their trust in the community before they get lost and turned off completely. I know this can be difficult with extreme members of certain political bases but hope isn't lost with people who are now raising an eyebrow.
As an example, initial messaging regarding vaccines was to get vaccinated/boosted because it would help reduce the spread and severity of the disease. My first bout of COVID (Delta era), before my vaccination, was asymptomatic with the exception of loss of taste and smell which returned after a few days.
My experience wasn't severe but it was still something I didn't want to experience again and got vaccinated within a week of eligibility due to the messaging. Several months later, after my son's daycare was dealing with an outbreak, I spread COVID to several people (5-6 I know of) despite the vaccine, prior infection, and not having any symptoms other than a headache. My family members that were boosted had far more severe disease than I did. It led me to think, why did I get this vaccine and why did they get boosted? Who benefitted from the vaccination? I certainly didn't and the people in my household/community didn't.
Now I am being told to get boosted and was recently chastised by an urgent care doctor for not being boosted. Why? CDC website doesn't give me any clear reason except to "prevent severe illness". I personally never experience severe illness and have a natural level of immunity by now so why get vaccinated?
The only motivator for this message that I can see is profit for the drug makers? Maybe? But now I am skeptical whereas I never was before.
I believe in the scientific community as a whole. It's made up of good people with the intentions of doing what is right for many. I received my flu shot like I have done for most of life. I believe in the science behind it. But this vaccine isn't something I trust anymore.
As it relates to this pandemic, I now out-right refuse to get boosted until I see a reason that addresses my concerns with it. CDC isn't clear, there is too much noise to research an answer. It's a conversation I had with my PCP as well and been told it isn't necessary. It's contrarian to the overall public health message.
Dialogue and messaging needs to exist for people like me. I'll never align with the likes of Musk and disagree with the notion to "prosecute Fauci" - absolutely ridiculous. There are many people in the middle who have been turned off from the guidance and the way things have been handled throughout the pandemic. It is still possible to get their trust back and not get caught up in the big picture of statistics, surveys, etc. Focus needs to be on messaging to the people who are willing to listen.
I’m going to address this as a 70 year old who lived thru a childhood that included mumps, measles, and chicken pox. I had mild cases of each one so for me, childhood diseases were no problem. However- Children died from complications of measles. There was also no vaccine for polio in my early childhood, but we received a shot every summer that was thought to reduce the severity of polio and later on my family lined up in the school cafeteria on Sunday afternoon to receive a dose of a pink liquid on a sugar cube. We lived in a small town 5,000 ppl) in a rural area and polio was not rampant, but every year one or two people were infected and it was tragic. I was also part of the public health campaign to eradicate small pox. Public Health nurses came to our school, administered the vaccine, and taped a plastic shield over the area. After our baths, our parents dutifully taped the shield over the ugly pox sore for a prescribed amount of time. All of this is to say- Public Health and epidemiology of communicable diseases is not about my individual experience. It’s about the greater good of our country. It’s like volunteering to go to war for your country. It’s a fact that vaccines are not perfect, but over time vaccination reduces disease and saves lives.
I agree with you on the rationale offered for vaccines. All the time now we hear that vaccines won’t protect you from infection, but will reduce the severity of the disease. But, earlier, we were led to believe that transmission would be halted - or greatly reduced - and they we suddenly heard about so-called “breakthrough” infections. I have never heard any public official body acknowledge that earlier opinion was wrong and that they had an obligation to “fess-up” that they should either admit to a mistake or admit that it was not true at the time, if they actually thought that infection was still quite likely. Another example of refusing to take ownership of mistakes and misinformation or their own making or at least misinformation that they should have corrected. Maybe it was just a calculated decision, as so many communications seem to be, to convince more people to get vaccinated. All it really did was undermine belief in the organizations.
Just saying "Sorry, we made a mistake in our understanding in something we have never seen before and that understanding continues to evolve" would go so much further rather than saying nothing and leaving individuals to speculate/seek out the opinions of unqualified people with a voice on the internet.
Changing recommendations in response to a change in the facts is not a "mistake." It's just the opposite. It is, in reality, how science works.
Dr. Clark has already pointed out what was wrong with your initial comment. I can add nothing to what he has written. Perhaps you should have taken it to heart before commenting.
I understand how science works (former marine biology major in college) and also realize that science shouldn't be commingled with policy or decision making. Maybe the scientific community would have more trust with the public if they weren't driving policy and changing the policy as their science research progresses. Stick to the facts and observations while getting profits and policy goals out of the equation.
The second half of your comment was unnecessary. I wish social presence had a Karma system like Reddit that was tied to everyone's social. People would be a lot more considerate online once they get flagged as an asshole by the general public and no one wanted to interact with them.
Another personal attack. Nobody is worth of respect. Everyone’s opinions and comments are stupid and misinformed unless they agree with yours.
Not what I wrote.
P.S. making a recommendation based on available data that later needs to be changed is not a "mistake." It is, in fact, exactly the opposite. Taking a stance and then refusing to change it when facts demonstrate the need to do so, on the other hand, is certainly a mistake.
I recall reading preliminary studies did show that transmission was reduced by vaccination. Then came Delta, followed by Omicron. My sense is the vaccine did not provide such benefits in light of these variants. However, situation is still pretty much what was promised: reduced hospitalizations, and dramatically reduced mortality. You've gotten what was promised. If you expected more, well, sorry for the disappointment.
I agree with you that variants may have changed initial studies. To echo what David said, where is the communication that public direction was wrong because of X, Y, and Z? Also why am I still being told to get boosted when I have never experienced disease that was worse than seasonal allergies? I am also young. Why is the public health message to get vaccinated still being shoved down the throats of individuals that aren't at risk?
I trust this messaging now about as much as I trust a street vendor on the streets of Rome. I am sure someone else will benefit from what is being sold to them but I am worried about getting pickpocketed and on my guard.
The point is that even if you are at low risk and maybe have a mild case is NOT the point! You need vaccination so more vulnerable people you know and interact with as well as those you don’t know have a decreased chance of exposure and development of severe disease. It is all about everyone else not you. If this was just about you then I could care less if if you get sick or die. But it’s not about you, it’s about others.
As an ED physician I put tubes into lungs of several people as a last ditch measure to keep them alive as they were suffocating with profound exhaustion in front of me, hoping that this might still save them. When I reflect that I was the last person to hear their voice and share their last few moments of consciousness on this earth, I still cry - and occasionally sob uncontrollably as I did most recently thinking about the most outspoken vaccine denier as I recalled the generations of beloved children and grandchildren he left behind!
It’s not about you - it’s about EVERYONE ELSE. If you think you’d be alive today without the day-to-day efforts of other people, whether you know them or not, throughout every day of your life then you really must be that stupid!
I am sorry for your experiences and I am aware of the damage done to people. However, please read my initial comment, specifically this part:
"My experience wasn't severe but it was still something I didn't want to experience again and got vaccinated within a week of eligibility due to the messaging. Several months later, after my son's daycare was dealing with an outbreak, I spread COVID to several people (5-6 I know of) despite the vaccine, prior infection, and not having any symptoms other than a headache. My family members that were boosted had far more severe disease than I did. It led me to think, why did I get this vaccine and why did they get boosted? Who benefitted from the vaccination? I certainly didn't and the people in my household/community didn't."
I should have added I wanted to prevent spreading to others like it was "advertised". I was vaccinated and everyone around me got sick - I wanted to do the right thing per Public Health Guidance and it changed nothing. Why should I trust what you are telling me despite personal experience being the complete opposite? Force feeding me "GET YOUR VACCINE" is no different than Musk Tweeting "PROSECUTE FAUCI" - I am not buying either of it without proof and evidence.
And instead of the Scientist community coming out and saying "here is what's wrong and why we are advising a new recommendation" the comment below by Stephen Strange indicates that it seems that most of the scientific community is too arrogant and proud to admit any fault in their role in Public Health policy during the pandemic. Seems like it just confirms scientists should have no role in public health policy and should just stay in their lane with regards to research.
"You've gotten what was promised.” Strongly disagree. The fact that the public (as opposed perhaps to knowledgable medical authorities and others with expertise) was misled initially is demonstrated by the shock of “breakthrough” infections. The widely accepted message had been not that transmission was “reduced”, but rather, substantially eliminated. The CDC should have been aware of that perception of the benefit - and known it was probably not accurate - after all tests had shown it wouldn’t be 100% efficacious - they should have proactively correcting that notion, so as to avoid distrust later. And they never acknowledged that initial impressions - regardless of who created them - were their responsibility to have corrected/qualified. And, knowing that flu vaccines are notoriously poor at preventing transmission should have been a clear signal that near elimination was totally unlikely in the case of COVID as well. Silence in the face of mistaken public opinion is also a failure of communications.
You seem unclear on the difference between seasonal flu and COVID. Perhaps a read through some of Dr. Jetelina's earlier articles could clear that up for you.
You also seem unclear on how science works, especially when confronted with a radically new virus (it's called the novel coronavirus for a reason). Nobody was misled except, perhaps, by their own inability or refusal to understand the scientific method.
Breakthrough infections were not a shock to those of us actually staying informed on events. They were especially unsurprising give the success of deliberate misinformation and propaganda campaigns by the anti-vaccine cult and its right wing enablers.
Your condescension aside, I was certainly “actually staying informed” and I have read everything Dr. Jetelina has posted on YLE. Nor am I unable or unwilling to understand the scientific method. The very fact that the media described the infections of those previously vaccinated as “breakthroughs” and were not promptly corrected by public health authorities with an EDUCATIONAL message as to why it was a misnomer is a testament to the poor communication. And, notwithstanding your snide remark, I am well aware of the difference between seasonal flu and COVID 19. Neither can be eradicated. But many people believed that these vaccines could virtually wipe out the disease -as in polio - and they were encouraged to think that by lack of education to the contrary. I fault the health authorities for that lack of guidance - and I believe no real such effort was made, because they felt it might cause confusion and make promoting the vaccines more difficult. This was typical of the “talking down” and “dumbing down of” the facts (and not admitting poor messaging) that the public was obliged to endure.
"Breakthrough infections were not a shock to those of us actually staying informed on events”. My point is that most people were not staying informed and those responsible for “messaging” should have gotten a better message out. And you are free to impugn my knowledge of science - but disparagement and condescension are exactly the attitude that created distrust.
No, the current attitude of distrust was created by radical right wing politicians and their enablers seeking to sow fear and distrust in our nation's institutions. Before you can tear down a nation's institutions, you must first discredit them.
The problem was not (and still isn't) that those in touch with reality didn't get a "better message out." The problem was that the message was shouted down by crackpots with bullhorns.
i read the initial Pfizer reports. apparently nobody in charge did, otherwise they would have been issuing a clear message of intent. the vaccine was never expected to prevent transmission, but to reduce severity.
Right, no clear message was sent.
In fact, the message was sent. That was the message I read in October 2020 with regard to the mRNA vaccines and a hope of at least 50% efficacy in reducing severe illness, hospitalization and death. In fact, we exceeded 90% in both vaccines, and had an additional and unanticipated benefit of a reduction of infections for the ancestral strain. With Delta, we saw sufficient mutations to promote evasion of existing IgG triggered by the vaccines. Thus, people who still had circulating antibodies were again at (reduced) risk for infection while those whose antibody titers had diminished or vanished were at greater risk. Yet, the cellular immune system continued to play a role in those previously vaccinated (or to a lesser extent in that period) or infected in reducing the severity of the illness.
That message did come out but I saw it countered by misinformation on platforms like Facebook, and even today on Twitter, completely free of attribution of their sources of information. Misinformation was allowed to circulate unchecked, while those of us "in the business" had to show our work when we posted.
Your complaints about communication gets a "Hallelujah" from the rafters. In fairness, though, public health didn't know how to do that a hundred years ago, and for a more recent example look at the HIV epidemic. Given social media and the fact that a segment of the US population took it as a badge of honor to nay-say the docs' recommendations the situation is, and was, bewildering.
That being said, the information everyone needs is out there. This blog is an example. The scientific papers are out there. Numerous social media sites curate and disseminate professional information and are very helpful explaining findings that are confusing.
I do not recall any health authority claiming that vaccines were being developed to prevent infection. They were developed to prevent severe illness. Clearly, there was always going to be an overlap between protection from infection and severe disease, because both are tied to the viral load. But I do not recall Fauci or others claiming that we could shed passive protection strategies with vaccinations because of protection from infection. That is why we health care providers continued to mask after receiving our COVID-19 vaccines. But again I understand why people may have been confused by words like protection.
The mushrooming of “the war on truth” in politics has spilled over into science. Recall Schopenhauer's Law of Entropy:
“If you put a spoonful of wine in a barrel full of sewage, you get sewage. If you put a spoonful of sewage in a barrel full of wine, you get sewage.”
Yes. My concern is that I have started to see the occasional spoonful of sewage in YLE comments from people who are clearly part of the right wing anti-vaccine cult. Gone are the days when I could read the comments here and not have to encounter a single comment that was little more than a farrago of unsubstantiated lies, distortions, and crackpot conspiracies.
I guess, in a way, that's in index of the growing awareness of Dr. Jetelina's work.
You make gross assumptions about people simply because they question authority. Elsewhere you insulted me, and I assume that you would peg me as a member of the "right wing anti-vaccine cult," but I have had three COVID shots (+ COVID!).
Some “cult members” are here but I you confuse the issue of genuinely misleading comments (there are some of course, but many not deliberate), and instead criticizing the poor communication that authorities provided with respect to the common disinformation. In order to make that criticism, it’s often necessary to repeat "the farrago of unsubstantiated lies, distortions, and crackpot conspiracies”. This discussion is not about the substance of the misunderstandings but rather the communication failures in educating the general public.
This is the kind of thing that drives many of us crazy: "I do not recall any health authority claiming that vaccines were being developed to prevent infection." Although *you* might not recall it, many of us do!
Here is the FDA's own website (1/21): https://www.fda.gov/news-events/press-announcements/fda-statement-following-authorized-dosing-schedules-covid-19-vaccines
"Two different mRNA vaccines have now shown remarkable effectiveness of about 95% in preventing COVID-19 disease in adults."
The American Academy of Medical Colleges (3/21): https://www.aamc.org/news-insights/6-myths-about-covid-19-vaccines-debunked
"the Pfizer and Moderna vaccines have been shown to have 95% efficacy against illness"
A peer-reviewed study in the New England Journal of Medicine: https://www.nejm.org/doi/full/10.1056/NEJMoa2035389
"The mRNA-1273 vaccine showed 94.1% efficacy at preventing Covid-19 illness"
To be clear, I'm completely fine with the fact that time has shown this to be inaccurate. That's science! And very happy to have a vaccine that mostly protects us from severe disease. But if you want to build public trust, you have to admit when mistakes are made and not pretend it didn't happen. We have the receipts!
These were serendipitous secondary effects. The goals were to create vaccines that would reduce serious illness, hospitalization and death. That part of the message was publicized briefly but when those same mRNA vaccines demonstrated an ability to neutralize initial viral load and prevent infection, the messaging, often in the hands of the media and well-intentioned "influencers" changed to something else and the original message was obscured.
I am still wearing a mask whenever I am indoors in public.
https://www.theguardian.com/us-news/2022/dec/10/masks-tripledemic-covid-flu-rsv-us?utm_term=639482d3ebf91058c0fd4088e31b0d71&utm_campaign=GuardianTodayUS&utm_source=esp&utm_medium=Email&CMP=GTUS_email
I am still wearing a mask indoors too. I am in and out of my 94 year old mother’s house every day and I’m committed to keeping her healthy!
I find the list of professions that scientists still rater higher than a little fascinating. ("Overall, trust in scientists has decreased throughout the pandemic, but ever so slightly. Interestingly it remained higher than public confidence in business officials, the military, public school principals, religious leaders, police officers, and elected officials.") What do they all have in common? They are in a position of authority and essentially get to "tell people what to do". Our country was founded on the idea that no one can tell us how to worship, what to say or what to believe. But in generations past there was still respect for what experts in their field said, because those experts had the education and knowledge base to speak from. But in the past several decades, we've been taught that OUR beliefs are somehow better or more important than those of the experts. We've been told to "do our own research" and somehow that has come to mean a quick Google search or mining social media for what we WANT to hear, not what the scientific or data based truth is. As someone who has worked in a hospital setting for over 20 years I've watched this play out at the bedside over and over. I agree that advocating for yourself is wildly important. But self advocacy is NOT using a Google search to "prove" you're "righter" than the expert. Self advocacy is about questioning things you think might be wrong and then having a discussion where both sides actually listen the each other and then fiond a way to come to an understanding of each other. And it feels as though throughout this pandemic, self advocacy has come to mean Google and social media, not actual research of reputable sites, not open and honest discussion. The same is playing out in our educational institutions at the same time. Expertise is being attacked by those who WANT to hear something less uncomfortable, less difficult. We've become a nation of self proclaimed experts. And I can only imagine how terrifying that is to the actual experts who are being attacked on a daily basis. I've seen the fallout of the "I know better" mentality: caring for patients in hallways because there are no rooms left, having to actually put our hospital on Divert (something we really never thought we'd have to do, but are now doing on a surprisingly frequent basis) due to lack of staffed beds, and patients we've built rapport with dying because they didn't beleive the science of masks and vaccines. I fear for our future. And I realize I've rambled. But a lot has been percolating in my mind for a very long time. Your missives help to keep it from boil;ing over too often, so thank you for that.
"But in the past several decades, we've been taught that OUR beliefs are somehow better or more important than those of the experts. We've been told to 'do our own research' and somehow that has come to mean a quick Google search or mining social media for what we WANT to hear... As someone who has worked in a hospital setting for over 20 years I've watched this play out at the bedside over and over."
A significant minority of patients will not get an accurate diagnosis unless they do the research themselves, a minority large enough (up to 1 in 10) that the majority of Americans might know someone who had to do this. The problem is not the science. The problem is mainly healthcare providers too strapped for time and other resources to *do* the science to their patients, providers who find themselves relying on snap social judgments with their biased heuristics instead. This is mainly not providers' fault: providers often work under constraints – too little time, specialties so siloed that "biopsychosocial" gets treated as bio OR psycho OR social (exclusive OR), defeating the biopsychosocial model – that defeat providers' ability to listen to patients and come to an understanding.
I belong to a patient community whose problem (EDS) is well-documented by medical science, but diagnosed as if it isn't – which is to say, rarely diagnosed correctly, especially in non-white-male patients, despite there being a cheap, low-tech screening tool (Beighton scoring – which won't work if no provider tries it). Self-diagnosis – or even accidental diagnosis by an acquaintance – of EDS is common. And EDS patients aren't special: this is how medical care works for many patients, even the fairly scientifically literate and trusting.
When mainstream providers fail patients, it's often through social, not strictly scientific, error. Medicine is a social enterprise, subject to resource limitations prompting biased heuristics. Since medicine is a scarce resource, gatekeepers must have some power to dismiss cases they find unconvincing. Too often, patients find themselves dismissed for being socially, rather than scientifically, unconvincing. Social inference is so fraught that betting that established medical science is wrong can seem safer than betting that you won't be dismissed by mainstream gatekeepers.
That's how I, fairly scientifically-literate, with little interest in alt-med, found myself provisionally accepting a "chronic Lyme" diagnosis from the alt-med provider my family persuaded me to see, who I'll call Dr Lyme. More than a decade after I met Dr Lyme, a mainstream geneticist correctly diagnosed me with EDS. No doctor had considered EDS until I self-screened and requested testing for it in my thirties, after, by sheer happenstance, I had met someone who said I reminded her of a friend with this thing called EDS. If outdoorsy people have EDS but doctors don't rule it in, attributing their symptoms to Lyme-based malaise may seem more plausible than other, more mainstream explanations, like SSD (Somatic Symptom Disorder, in the DSM-5, so mainstream, though judged problematic even by leading psychiatrists like Allen Frances, who chaired DSM-IV).
Patients who fall for pseudoscience may be acting reasonably, not because pseudoscience is true, but because they've had mainstream medical encounters so unreasonable that pseudoscience seems reasonable by comparison:
https://www.improvediagnosis.org/dxiq-column/feeling-dismissed-and-ignored-by-your-doctor-do-this/#:~:text=that%20a%20breach,itself%20is%20damaged.
For patients, there's one steady rule:
The more invisible your illness, the harder you must signal that you're not malingering to avoid dismissal. (I'm using "malingering" in a broad sense here, as needlessly persisting in burdensomeness, whether consciously or not: that sense, not the technical one, describes the dismissal leading to misdiagnosis better.)
Signaling that you're not malingering involves conspicuously fulfilling your duty to wellness by faithfully disciplining yourself with whatever care is available to you, even if it's dubious. Others' expectation that you do something to get better is stronger than their expectation that you choose a something that makes sense. Flaky efforts to get well are at least efforts. To turn up your nose at some suggested effort is to show bad faith, to signal that you don't really want to get better. Medicine isn't just a scientific, but a disciplinary process.
Oxford medical professor Trisha Greenhalgh quipped,
"Doctor: Don’t confuse your Google search with my 6y at medical school."
"Patient: Don’t confuse the 1-hour lecture you had on my condition with my 20y of living with it."
https://www.painscience.com/articles/science-versus-experience.php
The problem with only an hour's worth of medical education isn't the science, it's *not enough* science. But resources are so limited that an entire hour's worth of education on rarer diseases is actually a lot! Where would you fit them all if more time were spent?! And "There are nearly 30 million people in this country with rare diseases. Otherwise put, 1 in 10 Americans head to their doctors’ offices with diseases likely to be unfamiliar, diseases almost sure to lead to diagnostic confusion."
https://www.bmj.com/content/346/bmj.f1580/rr/638352
When 1 in 10 Americans risks getting unscientific dismissal from mainstream medicine, most Americans will know someone who's been ill served by mainstream medicine, perhaps several someones. This isn't science's fault – but can we be surprised when many people infer it is?
You're right on! Communities across the country have to tackle this issue. Example: a dear friend who only has a high school education tried to convince me that vaccines basically change your body at the cellular level. I gently asked her why she believes that. She replied that friend had told her she read it on the internet. I asked her what proof she had of this. She paused and said she didn't know, but her friend wouldn't lie. I said I wasn't calling her friend a liar, I was questioning her proof of this as she was claiming this as a fact which I had never seen. She paused and asked me if this was misinformation. I said it was. (She knows I read extensively in this arena.) I said it is really important to look for the scientific proof before condemning something that saves lives. I am tired of dealing with all this bogus info...as I am sure you are...and I think this has to become Public Health Job Number One...get the conversation open regarding How do you determine if something is fact or not. ( Sorry for the long post. ) Thank you for doing what you do!
I had a similar conversation with my dad (81)...I walked him through the reasoning step by step until finally he figured it out for himself. But that’s the issue, we do t have resources to walk 150 million people (roughly half of the US population in the 2020 Census), through the steps of reasoning through a problem. We either aren’t teaching it correctly in school, or people just willfully ignore it because...rights...
So many of our victories in the misinformation arena are one-on-one encounters, and these are not sustainable. There's not enough of us to counter all the misinformation that's out there.
Katelyn, good article and no easy answer to the Elon Musk's of the world who have such outlandish reach and in this case does harm to our nation as well as our profession of Public Health.
I am confident he is truly ignorant regarding Public Health history and pathogens causing Pandemics.
Many of the TV news spokespersons painted Dr Fauci as "The Nation's Top Doctor).
He has had an excellent career but he has become the target of politicians and right wing news for not having all the answers and rapidly ending the pandemic. No easy answer but commision for Public Health would be a great start if Bipartisan.
I don't know how to build an electric car company (or want to be a Billionaire) nor does he know public health. Pointing out the obvious ... that he is speaking out on a topic where his success in his life has not made him a public health expert but has allowed him to take for granted societies public health accomplishments over the years.
Regarding the issue of interpersonal trust, vaccination etc, my suggestion is ..... look to Mexico. Mexico is a mess politically, but there is virtually no vaccine denial. People do not trust the government with good reason, but they do trust each other. Thank you for your continuing contribution to public health.