Long Covid is being erased —again—Ed Yong

Another very good article by Yong.

But although the attempts are more subtle, the outcomes are the exact same. There is no actual difference in outcome between those who come out and simply assert "not a thing", and those who use dog whistle language to mean the same thing. They really do mean the same thing: what the patients are experiencing is not what's happening. And the outcome is the exact same.

It's like the difference between kicking someone in the face, and setting them up to fall on their face just as hard. "I didn't even touch them" is a meaningless defense, the intent is equally clear.
 
Good section about the "all your tests are normal" problem that many of us have run into.

The Atlantic said:
Long COVID can also seem bafflingly invisible when people look at it with the wrong tools.

For example, a 2022 study by National Institutes of Health researchers compared 104 long-haulers with 85 short-term COVID patients and 120 healthy people and found no differences in measures of heart or lung capacities, cognitive tests, or levels of common biomarkers—bloodstream chemicals that might indicate health problems.

This study has been repeatedly used as evidence that long COVID might be fictitious or psychosomatic, but in an accompanying editorial, Akulo Hope, the medical director of Oregon Health and Science University’s long-COVID program, noted that the study exactly mirrors what long-haulers commonly experience: They undergo extensive testing that turns up little and are told, “Everything is normal and nothing is wrong.”

The better explanation, Putrino told me, is that “cookie-cutter testing” doesn’t work—a problem that long COVID shares with other neglected complex illnesses, such as myalgic encephalomyelitis/chronic-fatigue syndrome and dysautonomia.

For example, the NIH study didn’t consider post-exertional malaise, a cardinal symptom of both ME/CFS and long COVID; measuring it requires performing cardiopulmonary tests on two successive days.

Most long-haulers also show spiking heart rates when asked to simply stand against a wall for 10 minutes—a sign of problems with their autonomic nervous system. “These things are there if you know where to look,” Putrino told me. “You need to listen to your patients, hear where the virus is affecting them, and test accordingly.”
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rvallee said:
Another very good article by Yong.

But although the attempts are more subtle, the outcomes are the exact same. There is no actual difference in outcome between those who come out and simply assert "not a thing", and those who use dog whistle language to mean the same thing. They really do mean the same thing: what the patients are experiencing is not what's happening. And the outcome is the exact same.

It's like the difference between kicking someone in the face, and setting them up to fall on their face just as hard. "I didn't even touch them" is a meaningless defense, the intent is equally clear.
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Yes please to calling them out. And having names for them and terms for what they are doing. This is an important line that we should be able to use about each and every person using faux ideologies and one-liners across the various aspects of LC and ME: whether it is weaponising mental health labels (I think far more egregious than admitting your own bigotry) or 'playing obtuse' and pretending not to understand on the stats, actually those who do this are worse than those who at least not so cowardly as to not confirm and admit what they are saying.

I'd rather have yuppie flu and that person be able to stand in front of other bystanders and see their reaction and at least use basic terms rather than sophism than the awful slimy weaponisers who aren't even honest enough about the implications of and what is really underlying what they think even to themselves. Nothing more cowardly than thinking you are entitled to 'avoid an argument' whilst institing on holding a vile contentious view that wrecks someone else's life for no reason at all on a topic that literally makes no difference to them at all either.

Another term I came across and thought was useful for other things is benevolent paternalism. And I think is one thing that the are of ME has struggled to break free from, particularly those who are more severe as those who are less severe speak for them and make assumptions. We have a clever voice often, just need people to understand we need effort to be heard and ta we are saying something specific vs the 'doing the work' exclusion. ie there is a whole chain where even the 'kindest' don't get, inadvertently, what they are doing to the voice of the ones who know the most (and whose testimony 'words in mouth' and theoretical suffering/consequences they rely on when they warn of 'not being made worse).

So we have some inverting back to the right way up of our own that we need to do even in our own best community set-ups I think. And I'm intrigued to see how LC does things differently.
 
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McCone knows 12 people in his pre-pandemic circles who now also have long COVID, most of whom confided in him only because “I’ve posted about this for three years, multiple times a week, on Instagram, and they’ve seen me as a resource,” he said. Some are unwilling to go public, because they fear the stigma and disbelief that have dogged long COVID. “People see very little benefit in talking about this condition publicly,” he told me. “They’ll try to hide it for as long as possible.”
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This is familiar. And speaks to how for e.g. ME/CFS unbelievably the disability itself is absolutely huge, but somehow society has managed to find a way to create an even bigger disability it has loaded onto these people. SO big that those with this incredible disability feel better-off damaging that by taking their 40% of normal people's energy and doing 120% of some normal persons job [to make sure noone can suspect] and smiling compared to the 'additional brutality' they get from coming out.

Mention it and get barrages from other peoples horrible ranty ideologies you didn't know was hidden dark inside their pretend personas they've put out for years, until you crossed-the-bridge where they think you so diminished now in status that you telling others you've seen who they really are won't be believed, heard or disagreed with (the scariest when you realise almost all actually think that way and you tell a horror story about another only to find the other person justifying them).

So ironically I think that we can with a good methodologist probably quantify just how much a debility and injury the 'stigma' (not a strong enough word) is as an injury and disability in itself. Simply by looking at exactly when people had eventually to come out, how severe they were, and looking at the support network they had defending them vs those who didn't have that firebreak from the innate animosity of the weaponised mental health label narrative given permission to 'go at it' for everyone around an individual. And seeing how far their health and life fell and how quickly for those.

ANd defining that drop as 'what those people took from them in terms of health, rights and life'. Because it is so stark in ME/CFS: 6months after the 'events' there is the beginning of your results and 2yrs on if it is still getting worse than it remains.

And LC is a very good and clean one to also do at the same time due to the time periods of it. I'd do ME/CFS also (and it needs the different severities because of the ability to hide or not) to separate it from accusations of it being 'covid' politics.

Because of the nature of the energy-limited condition and 'sensitivities' (often we aren't 'sensitive' we just had what normal persons couldn't put up with without it affecting their health levied at us and it causes us more harm more quickly because without break the exertion impact vs reducing rest is devastating) these choices of those around us to choose how to weaponise bystanders and laypersons or not, by making it socially unacceptable, are in themselves a defineable disability/injury.

And my gut about when people say others can't understand and see ME: it is a lie. Certainly the darkest personalitieis if they get to be around you just enough can spot exactly such perfect buttons to press in exact timing to cause maximum damage there is no way that it isn't perfectly evident to those looking (which predatory types or those with certain personaliities do partly because of their 'aping' and scanning social norms rather than empathy coming from within etc).

And yes we have a lot of people in between who play the 'don't bother about anyone else' so just choose not to look and ingore if they can to self-focus on what they fancy, but they'd be pulled right into line by social norms because it would shift the balance for them too.

So we very sadly have this massive 'disability' (on top of the actual health one) that perhaps is even bigger than the health one if people were allowed to just be and have support to surive and a bit of acceptance to get on with it but it might eke at the edges with hours or exhuastion here or there which is entirely a convoluted creation of those who claim it is nothing.

The closest analogy is a society choosing to remove all ramps and dropped kerbs and thereby confine all wheelchair users to the house forevermore. But imagine if they got further bullied in their home. Bullied for not being able to get to the office. Except for us it affects us in our own homes and degrades our health so so swiflty with bullying on things that hurt us and lack of access to things that might be the difference between dropping like a stone or keeping afloat with a symptom combination.

It's stupidly harmful and deluded concepts like 'sleep training' that I think can take around 20% off my health in the space of a month that idiots believe in merely because of what - idiocy and seeking to be judgemental (good patient-bad patient game theory is played a lot in dividing our condition)? Heck we had the world 'helpfully' thinking that forcing us to exercise whilst they watched it make us more collapsed based probably only on some awful people's horrible innate delusion of that being what we deserved (which they don't admit to themselves) 'for not being normal' and the worst bit from term: end of conversation (because they are too rude to want to put actual intellectual anything on that).

And none of that is necessary as disability or needs to exist, we could be as productive and healthy as our health allows (which yes is limited but better than even more limited and less independent) - it is mainly there by choice of those around us choosing to add it on: if you can't be perfect then you can have daily bigotry on top as a further doubling of your disability and illness. The horrid irony being they eventually drive you to not being able to be independent - even though knowing who is out there at that point is a worst nightmare has meant you've tried anything to avoid any part of that - so properly stuck at not being able to be independent at all by that point. That's the irony of what they did: caused the thing they criticise and say is their blight.

I'd like people to start owning that who choose to do it and the consequences of their stepping out and choosing that end impact. And no it isn't our 'mental health' or 'ability to cope', it is dark (or deluded) people who choose to pick on and do what they would never do to other healthies those who they know such actions will do direct damage to - for whatever reason (normally it is just the world permitting them to now 'take liberties from' because hey if they argue back they are the weirdo). At least let's put at the door what extent-wise is caused by what.
 
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Other aspects of long COVID make it hard to grasp. Like other similar, neglected chronic illnesses, it defies a simplistic model of infectious disease in which a pathogen causes a predictable set of easily defined symptoms that alleviate when the bug is destroyed. It challenges our belief in our institutions, because truly contending with what long-haulers go through means acknowledging how poorly the health-care system treats chronically ill patients, how inaccessible social support is to them, and how many callous indignities they suffer at the hands of even those closest to them. Long COVID is a mirror on our society, and the image it reflects is deeply unflattering.
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Yep. I've used that one (mirror) as well as it being like x-ray glasses for seeing who people are when they know you have ME/CFS.

And I have come to start realising that the word I've been searching for is 'callous' ironically in the last week too when trying to put my finger on what the thought issues and attitude is of the 'general majority' around me.

I think it only took me so long to arrive at that word being 'it' because I was so sure for so long that surely that many could not be that hard, extreme, unpleasant in certain things that lie inside them so you sort of treat these things with interest looking into other explanations or maybe it is a misunderstanding until enough happens often enough repeatedly enough for you to have been told who they are with no other possibility.
 
For example, a 2022 study by National Institutes of Health researchers compared 104 long-haulers with 85 short-term COVID patients and 120 healthy people and found no differences in measures of heart or lung capacities, cognitive tests, or levels of common biomarkers—bloodstream chemicals that might indicate health problems.

This study has been repeatedly used as evidence that long COVID might be fictitious or psychosomatic, but in an accompanying editorial, Akulo Hope, the medical director of Oregon Health and Science University’s long-COVID program, noted that the study exactly mirrors what long-haulers commonly experience: They undergo extensive testing that turns up little and are told, “Everything is normal and nothing is wrong.”

The better explanation, Putrino told me, is that “cookie-cutter testing” doesn’t work
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The government is designing research studies using “cookie-cutter testing” because they know in advance that the tests will turn up nothing and they can deny the huge deluge of disability claims by using this fake research as evidence that long Covid is fake.
 
Sid said:
The government is designing research studies using “cookie-cutter testing” because they know in advance that the tests will turn up nothing and they can deny the huge deluge of disability claims by using this fake research as evidence that long Covid is fake.
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Hard to dispute this when the first study published did exactly that, despite not being credible that the researchers did not understand it. Unless they simply did not bother learning about it beforehand, obviously they knew that standard tests showed nothing and that it would be used to minimize. But they went ahead and made it the first publication anyway, by months.

The sheer %, it's not numbers it goes to significant %, of studies that are clearly aimed at selling a particular outcome warrants massive reforms over bias and outcome-seeking. This is clearly a system that is OK with manufactured lies, with Truthiness, maybe even above finding the truth.

Instead, until a breakthrough occurs, it's all just mindlessly following the path of least resistance, failure is basically expected, almost desired.
 
Sid said:
The government is designing research studies using “cookie-cutter testing” because they know in advance that the tests will turn up nothing and they can deny the huge deluge of disability claims by using this fake research as evidence that long Covid is fake.
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This is the outcome of decades of the BPS approach. They have refined a pseudo-scientific methodology that only delivers the carefully tailored correlations they want, by deliberately and systematically discarding, diluting, or downplaying outcome measures and trial designs that might test for causal relations (or lack of them) in those correlations.

PACE authors explicitly admit this on the formal record when, part way through the trial, they asked the trial governing committee (name?) to allow them to dispense with actimeters for outcomes because they failed show a positive benefit in previous trials (for CBT in ME/CFS).

IOW, they knew that this objective and relevant measure, (which they initially chose to include in their trial, and had already collected the baseline data for), was highly likely to falsify their causal hypothesis and therapeutic claim, for CBT at least.

So they ditched it.

There is no ambiguity about their intentions here. The BPS club want to prevent the collection of any evidence that can help clarify causal relations, so they can claim a win based entirely on untested correlations.

They are deliberately evading and obfuscating the core issue of causation.
 
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Unsurprisingly, I've seen minimizers/deniers doing the thing Yong is criticizing here, a more veiled/subtle denial but denial nonetheless, doing exactly what he describes in response to reading the article: emphasizing the uncertainty, pointing out how it's so mysterious/hard to define, unreliable prevalence numbers exaggerated the issue, it's not nearly as common, yes it may be bad for some but really it's mostly a tiny number of whiners who deserve sympathy and all but, not an issue worth thinking about.

But really, they did exactly that as a commentary on the article, which they disagree with, then go right ahead and do exactly as described. That's just amazing. I really don't know how we solve this at this point. It's one thing to work on the same goal and disagree on some detail, but here we have the patient population and the medical profession in a completely mutually exclusive space, where everything we need is the last thing they want, and all they want is to continue failing, because they think it's successful/not even a real problem anyway. We are simply not working with the same set of facts, the same reality.

Honestly at this point it all feels like trying to reason with flat earthers. It's really that bad. Walls are more amenable to reason than this. The issues go so deep and are so foundational there is nothing to work with here.

At least it leaves no doubt that barring complete chance, medicine will simply not be part of the solution. They categorically refuse to do anything competent. So, definitely we solve this with the help of AIs, sooner or later, or no one will. But it's unlikely to go any other way, the problem is cultural and political, and that's not open to reason. Clearly we always were, but we're completely on our own here. There is no one responsible for this and zero motivation to change anything.
 
MSEsperanza said:
Health Nerd on Twitter:
"So, I disagree somewhat with this piece from @edyong209. As I've been saying for some time, I think the biggest challenge in the discussion of Long COVID comes back to definitions“ /
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Not up to reading but at first glance seems valid critique to me?
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I think it's valid to say that the term "Long Covid" needs better definition/subgroups/whatever. Some studies seem to define Long Covid as anyone with any lingering symptoms, and for a pretty short time (weeks vs. months or years).

I also found the thread too long to read fully! But I skimmed it and found one tweet that says:
Health Nerd on twitter said:
So Long COVID is a big health issue, and has undeniably serious impacts on some people.

Also, the evidence shows that most people who get Long COVID experience relatively mild health issues which resolve over time.

These two statements do not contradict each other.
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I disagree with the word most in that second sentence. If several studies show that roughly half of the people who get Long Covid end up meeting the diagnostic criteria for ME/CFS then wouldn't you say that about half the cases resolve, not most?

Even relatively mild ME/CFS can be quite limiting. And most of the time (there are always exceptions) ME/CFS does not "resolve over time."

In short, I do think he's falling into the trap of saying that Long Covid is real, and serious for some people, but not for very many people. As Yong put it, he seems to be saying that Long Covid is "less common and severe than it has been portrayed."

Just some thoughts, no idea whether they are right!
 
ahimsa said:
If several studies show that roughly half of the people who get Long Covid end up meeting the diagnostic criteria for ME/CFS then wouldn't you say that about half the cases resolve, not most?
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Those studies aren't half of pwLC. They're half of pwLC who make it to an LC clinic, making them much more likely to be severely ill.
 
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