26 Comments
Oct 3Liked by Julia Doubleday

Excellent piece, Julia. I am outraged at the director calling this “trauma.”

I’d also argue that the officials at this meeting who didn’t mask didn’t commit microaggressions - I’d call that straight-up aggression. If you don’t do a basic, proven, simple act to prevent the people in your midst from possibly dying, then you are an AGGRESSOR.

The message is crystal clear: you people don’t count. Go back in hiding so the rest of us can go to brunch in peace.

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Oct 3Liked by Julia Doubleday

Truly astounding that folks who are supposed to be data-driven at CDC, NIAID, etc. ignore the science in favor of some delusional pre-2019 “normalcy” that is anything but. The public health consequences of their dereliction of duty cannot be overstated and will likely be felt far and wide, especially if we allow another 5 years of unchecked transmission.

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It's fascist capture of our institutions. Fascism is inherently irrational and destructive. I'm not fond of Freud but I think he was onto something with his concept of Thanatos. That's an inherent part of fascism.

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Oct 3Liked by Julia Doubleday

As if the pre-pandemic "normal" was ever good for sick, disabled or otherwise vulnerable people anywhere. That's nothing to aspire to. Thank goodness for Julia and others who still have the capacity to try to educate the "normals". My energy for it ran out in Year Three of this shitshow. Now I can only engage meaningfully with my very nearest, and with the folks in my ME/LC patient support groups, which continue to grow every day. And on it goes, with no end in sight and no help from the top.

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Every. Word. Of. This.

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Oct 3Liked by Julia Doubleday

Thank you so much for this. Watching them all go unmasked at the conference was deeply demoralizing. I got covid in March 2020 at 33yo. Now 38 and still severely disabled with Long Covid, POTS, MCAS, ME/CFS. Previously an athlete with a big career, I’ve said goodbye to all that, my house, and my city. My mom cares for me. I’m only doing this until I’m 40. Those doctors, researchers, and bureaucrats made it hard to have faith when they read all the comments at the conference begging them to mask and continued to ignore it.

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author

It is so demoralizing!

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They are so incredibly selfish. That's not really the right word it though because they're also hurting themselves.

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Wow, Julia, I understand your frustration and anger. You sure do like to spin out a monster rant! For me, I would just say that it is incredible that an insensitive asshole like Dr. Marrazzo can be a physician, never mind the director of an NIH institute.

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As the panelist at the meeting who made the comment, I want to weigh in and say that Marrazzo is NOT an insensitive asshole who shouldn’t be a physician.

While I am deeply frustrated with her quote on this, I am even more so precisely because she is NOT an insensitive asshole. She has a track record of patient and community engagement in HIV research that is better than most, and throughout the meeting made specific vital commitments to this phase of RECOVER that are very important to getting the answers we need after a lot of effort went to waste under the initial RECOVER leadership.

There’s plenty of people who are otherwise good and ethical about what they do who are off base on masking. We’ve ALL been done a terrible injustice by state-sponsored misinformation and disinformation on masks, and the ongoing trauma perpetuated against disabled people in this pandemic, fueled with the power of deep ableist narratives. I’m not ready to throw people away who are part of the massive majority that aren’t doing right on this, and will be reaching to Marrazzo to discuss further.

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author

Thank you JD! I am so glad to hear you will be speaking w/Marrazzo further.

I definitely don't believe in throwing ppl away for not masking- however I do believe that as the head of the NIAID she has a far higher degree of responsibility than the random every day folks around us who have been so misinformed about COVID. She clearly knows what COVID can do- whereas ppl in my own personal life do not believe in Long COVID or don't understand what it is precisely because leaders like her refuse to mask. Her decision not to mask is far more than a personal choice, it is public health guidance, and constantly appearing in public bare faced amidst ongoing transmission creates anti-masking/pro-infection beliefs and behaviors among the public. I truly believe if the heads of the public health bodies, WHO and CDC were masking and consistently communicating about the risks of infection, I would have no problem explaining to ppl why I mask. Right now the issue is that they believe I'm a conspiracy theorist bc the messaging from the CDC is so specifically designed to persuade ppl to accept continual reinfections.

That said I so appreciate all you do and your thoughts, and as I said I'm so glad you have a line of communication to be able to continue the conversation.

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Agreed on all points!

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Oct 10·edited Oct 10

What does it mean to "throw people away"? What I see is strong criticism of someone who more than deserves it for both their words, their actions and their lack of words and actions. If "throwing people away" means giving up on pressuring for change, then I'm not sure anyone agrees to that. If it means toning down criticism to maintain access, then I personally don't agree with that. If anything, we need to emulate a lot more from the tactics of Act Up to get attention to long covid. Marrazzo has done incredible harm and is in a position to do a great amount of good if she were to choose to stand up for actual public health. Thank you for speaking out and doing good work.

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Many, many physicians are absolute monsters. Anyone on any axis of oppression could tell you stories.

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Oct 5Liked by Julia Doubleday

I am so saddened by the behavior of physicians who don’t mask in oncology clinics and with other immunocompromised patients (as well as in other medical settings). I worked for 50 years in the medical field and always admired physicians except for the few who were incompetent. By and large, I felt physicians had patients best interest at heart and that they believed in the principle of do no harm. This does not mean that I accepted every decision that they made without critical review. But to witness the wholesale abandonment of these principles by physicians and to see them embrace the survival of the fittest approach in medical care is so profoundly disturbing to me that I can no longer trust any physician I see. I have lost all respect and that is very, very sad.

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Every word true. Healthcare has become some kind of bizzaro universe. I can't get past the irony of getting vaccinated by people who swab my arm with alcohol first, but don't wear a mask while breathing into my face. (Who proclaimed that one-way masking works just fine? Oh right, it was the Wall Street Journal.)

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I dealt with a phleb a few weeks ago who exchanged eyerolls with another staffer when I politely asked her to mask (I'm sure she thought I didn't see). She was curt to the point of rudeness throughout my appointment. I'd love to complain, but that place is both convenient to me and more professional than its competitors, and it's probably not a great idea to make enemies of people who stick needles in your arms.

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I love when I ask them to wear a mask, and when they do it's a surgical mask which they make a point of putting barely on the tip of their nose and then they rip off the second I start to walk away.

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I have no respect for any "doctor" who won't mask for patients. Absolutely disgusting.

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Oct 3Liked by Julia Doubleday

As always, Julia, you hit the nail on the head. Brilliant and accurate piece. People want to know why I don't go to doctors or dentists anymore. Because they don't mask anymore. It's a sad, pathetic world we live in. I don't expect anything to get better, not while the billionaire class, their corporations and the politicians whom they fund and control insist that we go back to work, go back to school, but if you get sick or die, too bad for you, someone else will take your place. And the ruling class does invest in ventilation or other mitigations for themselves but not for We the People, the creators of their wealth and power, because they don't want to spend the money. So glad that I am retired and live alone. Many thanks again, Julia, for all you do.

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Oct 4Liked by Julia Doubleday

The idea that pre-SARS-2 was just fine in terms of infectious disease is not helpful. HIV transmission has merrily gone on for more than forty years now with over 10,000 new cases annually. The global burden is much greater. Steven Thrasher's book "The Viral Underclass" is a good take on both pre- and post- SARS-2 infectious disease issues.

I find this weird phobia about masks puzzling. People don't seem know that N95 masks were invented long before the current pandemic and were mandated in places like hospital TB wards. They've been used for years in construction and other places where there are hazardous airborne contaminants.

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Oct 4Liked by Julia Doubleday

That's a good point. Many of us with ME-CFS developed it years before the emergence of SARS-CoV2, as the result of other viral infections. (Mine was triggered by a flu-like virus 24 years ago.) Those outbreaks were also dismissed as undeserving of serious attention.

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Oct 3Liked by Julia Doubleday

Perfectly said. Thank you.

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Oct 4Liked by Julia Doubleday

Well written. I agree with Amy that not masking at a long covid meeting during an active pandemic is more than a micro aggression. Arguably, what I find more perplexing is why so many intelligent people that are masking would do not "vote with their feet" and not attend / leave meetings like this. The passive acceptance / normalization of the behavior makes me question my own perspective. I would so welcome being enlightened as to what I'm missing.

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Fighting the good fight✊🏼 TYVM Julia for the reminder I’m not alone in this!

https://x.com/organichyck/status/1713232901196882431?s=46&t=AYUeu1-4dB0E6WRi-Rh8fQ

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Great quote to highlight and turn into an article. Marrazzo is straight up an evil person. She's doing a nice job continuing the minimizer role of her predecessor Saint Fauci. I guess since he didn't tell people to drink bleach, he became some kind of emotional father figure for shitlibs and even some supposed progressives. These "public health" "experts" who have constantly laundered right wing minimization of a deadly pandemic and normalized let it rip make me sick.

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