Long COVID patients drop out of PAXLOVID study...because staff didn't wear face masks.

Some people can't let the paranoia go.

I generally stay away from covering these sorts of posts, but there was something about this that made me feel like covering it.

I came across a Daily Mail article with the following title:

From Daily Mail

Again, a rather outlandish title.

The article refers to a PAXLOVID study taking place at Stanford in which researchers wanted to investigate whether a 15-day course of PAXLOVID would improve Long COVID symptoms relative to placebo:

The purpose of this study is to compare whether being treated with Paxlovid (nirmatrelvir plus ritonavir) for 15 days works better than being treated with placebo (plus ritonavir) to reduce severe symptoms of Long Covid (the placebo does not have any active drug). Participants will have 5 planned visits to the study clinic over 15 weeks and will take the drug (or placebo) for the first 15 days. This study uses the term post-acute sequelae of SARS-CoV-2 (PASC), which is another name for "Long Covid."

This study apparently overlapped with a timeframe in which mask mandates were removed, leading some researchers to no longer wear masks. This has supposedly angered some of the participants, causing a few of them to leave the trial over the lack of masking.

The Daily Mail article elaborates further, although drawing supposedly from a Daily Beast article which interviewed two of these alleged study dropouts:

Masking is no longer mandated by the California Department of Public Health and Santa Clara County Public Health, where the Stanford Infectious Disease Clinic is located and where the trial was held.

The Daily Beast spoke with at least two people in the study who withdrew due to the lack of masks. When reached by publication, Stanford Medicine would only confirm that one patient in the Paxlovid trial pulled out over concerns around masks.

'I knew that mask mandates were dropped, but I naively assumed that staff interacting with long COVID patients would still wear masks,' Olivia H., a patient in the trial who requested her full last name be withheld for privacy reasons, told The Daily Beast.

'I was really disappointed when the research assistant and nurse entered my room without a mask on,' she added.

'I would expect that all staff involved in the trial would understand that long COVID patients are fundamentally immunocompromised, and they would take necessary steps to protect what little health we have left from further deteriorating,' she said.

As the young kids say, there’s quite a bit to unpack here.

For instance, where exactly is this information coming from that Long COVID patients are “fundamentally immunocompromised?” I have never heard of Long COVID being referred to as a syndrome related to poor immune health.

The information with respect to these dropouts itself also isn’t clear. Both the Daily Mail and The Daily Beast appear to have gotten their information from this Reddit post:

That language appears to have creeped up again, in this case with the phrase “a complete lack of regard and understanding for the illness in question…”

Again, what is this understanding of Long COVID that is being referred to here?

I am of the belief that Long COVID is a real syndrome that is multidimensional. I disagree with those who argue that Long COVID exists, mainly because most studies that attempt to quantify levels of Long COVID tend not to control for baseline characteristics, which tend to overlap tremendously with common symptoms such as coughing or headaches.

Here’s a hint- when the criteria for a syndrome requires that AT LEAST ONE symptom be met on a survey which also asks a person to recall the number of events over the past few months accurately, you’re doomed to not find anything meaningful.

But what bothers me about the above remarks in question is that they allege those who are experiencing Long COVID are somehow more knowledgeable about the disease by virtue of having the disease.

I would argue that Long COVID sufferers can provide a lot of insight with respect to their own personal accounts of their struggles, but that’s far removed from somehow suggesting that Long COVID is related to poor immune function.

I find it rather strange that somehow, a disease of which much is still not known is somehow being discussed in absolute terms, as if those who suffer Long COVID are somehow in the know of information that other people are not privy to.

But it also points to this strange paranoia of reinforcing the norm of masking. Suppose here that these people are adamant that investigators wear masks for their own safety.

Do these people dictate that others wear masks when out in public?

It seems as if some of these arguments are done in a manner that intends to uphold the notion that widespread masking is not only encouraged, but should be mandated.

Supposedly, another “dropout” of this study commented in the Reddit post. I use quotation marks here not to mock the person, but because I am not able to verify the accuracy of this account (the primary investigators have commented that only one person appears to have dropped out of the study due to the unmasking issue. Emphasis below mine).

I was in this study and I left it. They did some bloodwork and claimed my D-dimer was 4.9, called me panicked the next day lightly implying I was going to die, and I ended up getting rushed to the ER — despite what exposures could happen in the ER. ER redid the blood work and leg scans and it was normal; Stanford messed up. I ended up with the worst crash of my life after AND exposed to the ER. That ER visit cost me $700 and a month-long crash. Horrible study.

Also, they were originally only wearing surgical masks— which was terrifying, because they made you remove your mask for swabbing. I had to email them the second time (before dropping out) and ask them to wear N95s for my next appointment. With that said, not wearing them AT ALL when they make you do a swab is horrifying. This study is a nightmare.

Supposedly, I would assume that researchers were giving routine tests in order to check whether participants were positive.

But the comment above speaks of extreme fear, to the point that this person was scared of even removing a mask to get swabbed for a PCR test.

I can’t help but see these sorts of remarks and think that we are back in 2020 with the manufactured fear that we would all drop dead if we caught COVID and thus must take whatever measures necessary to “flatten the curve”.

It speaks of the instilled fear that many of these Long COVID sufferers may be living under. How long have some of these people suffered? I find it hard to keep up this level of fear without having it interfere with daily living. In the case above does this individual demand that others wear N95 masks around them for fear that they may contract COVID again, and dictate that others do so as well because they seem to know better?

In response to these events several people have taken to commenting on the absurdity of this situation, including Dr. Vinay Prasad who made the following Tweet:

Now, to be fair someone who has Long COVID can still contract COVID again, although the severity of Long COVID would certainly be unknown after this event.

It would also be true that anyone who has contracted COVID would be at risk of contracting it again at some point in the future, so this argument also isn’t related to Long COVID sufferers as well and becomes a rather moot point for those who are using it to argue masking.

In this case, it may appear that those who have experienced Long COVID may consider themselves in an unearned position in which they can dictate how others operate or live their lives.

This is a point that I would agree with Long COVID denialists on, in that we shouldn’t shape our lives around the fear of experiencing Long COVID. We’re at risk of always being harmed or dying whenever we decide to live our lives. It’s the choice to live that dictates how we operate in the world; not the other way around.

I do believe that there are many who are suffering Long COVID, but to believe that the world must fit your views, or to assume that you are “following the science” because of your experiences is ludicrous. We are almost 3 years on, and at some point people need to move on from living in such fear.

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