Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

[rvallee]

Haven't seen this mentioned yet but interesting:

By the time respondents took the survey, 155 had received a diagnosis of POTS, and 118 had received a diagnosis of ME/CFS. Based on the reported symptoms, higher percentages of respondents might meet the criteria for these diagnoses than have been clinically diagnosed.

Would be especially interesting to know the geographic spread of those who did get a diagnosis. Maybe it's distributed but I assume some countries are stingier with them. The most frequent is migraines.

Really interesting things to check, again with a past history of those types of symptoms being significant:

Most patients (83%) reported at least one pre-existing condition. The most commonly reported pre-existing conditions were seasonal allergies (36.3%), environmental allergies (24.1%), migraines (18.7%), and asthma (17.1%). Other conditions of note include acid reflux (12.2%), irritable bowel syndrome (12.9%), vitamin D deficiency (11.8%), obesity (10.7%), hypertension (9.1%), hyperlipidemia (7.4%), and myalgic encephalomyelitis / chronic fatigue syndrome (2.5%). In the United States, the prevalence of asthma is 7.7%. While this cohort is not representative of the U.S. population, the prevalence of asthma (17.07%) should be noted.

 

[DokaGirl]

Or were in a rolling state of PEM. Hard to spot a 'PEM state' if you don't experience a 'non-PEM state'.

Exactly!

 

[DokaGirl]

CBC TV said one commonality amongst the COVID long haulers is POTS. Unfortunately, and as usual, coverage was too limited. The TV article advised POTS is treatable. Not from where I stand. Lots of barriers to treatment: recognition, knowledge, interest, capability, expertise, availability etc. And, I've read mixed reviews about the drug efficacy.

On another note, putting on my advocacy hat, I want to send this article out to many decision makers, and journalists. Not that I have the energy right now to do that!

 

[rvallee]

CBC TV said one commonality amongst the COVID long haulers is POTS. Unfortunately, and as usual, coverage was too limited. The TV article advised POTS is treatable. Not from where I stand. Lots of barriers to treatment: recognition, knowledge, interest, capability, expertise, availability etc. And, I've read mixed reviews about the drug efficacy.

On another note, putting on my advocacy hat, I want to send this article out to many decision makers, and journalists. Not that I have the energy right now to do that!

I see that a lot. Wayyy too much in fact. I have no idea where this idea comes from, especially given that Long Covid heavily presents with that and yet it has been pretty much systematically missed (although a small % did get properly diagnose, but very small). If it were treated adequately by health care, long haulers wouldn't have been systematically gaslighted with "it's anxiety" and on and on. This is so much like people replying to complaints of harm about GET, saying that there is no evidence of harm while dismissing the complaint of harm because all prior complaints of harm were dismissed. Self-awareness: 0.

It seems that physicians assume dysautonomia is treated fine for the same reasons people with Long Covid are "recovered" and pwME "recover" from ME: nobody actually checks and/or use definitions that have nothing to do with reality. Also because they rarely see any, mostly because they can't actually diagnose it and so miss it completely.

 

[Ravn]

And I would say that the crucial element in this paper, and why it reflects reality much more accurately, is the involvement of patients throughout. This is something that will need to happen with ME research in the future; I'm very grateful to those researchers who have worked in the ME sphere (except of course those BPSers) but I don't think historically they have been good at this, and that needs to improve.

It seems to me that this kind of study is the sort of thing that we should have had for ME many years ago. And given that it can be done relatively cheaply, I don't understand why it hasn't been (aside from needing a researcher or two interested enough to do this sort of work). But now with the Solve registry being rolled out, and DecodeME showing that we can reach tens of thousands of potential participants, this would seem to be a great time for it. Just need to find a researcher and funding I guess...

I would consider replicating this exact study with ME patients a priority item. I just don't know how to get that to happen either. This is the kind of research that only patients can design properly. We are not involved in any capacity for the most part, DecodeME is pretty much the only significant exception.

I want to scream yes, yes and YES!!! in response to every single one of these sentences but will restrain myself to one word in capitals.

Is this something that could be done through one of the more sensible charities, in collaboration with S4ME? They've done those big surveys on harm from GET/CBT, so why not a big survey on symptoms? Would still be good to get a competent researcher involved to make sure the number crunching is done correctly. And to lend an air of respectability - which shouldn't be necessary but sadly it remains a fact of life that a researcher with established scientific credentials is taken more seriously than a bunch of patients, especially patients with ME...

 

[Andy]

Is this something that could be done through one of the more sensible charities, in collaboration with S4ME?

I obviously can't promise anything but I've already started to make a few enquiries.

 

[Forbin]

Or were in a rolling state of PEM. Hard to spot a 'PEM state' if you don't experience a 'non-PEM state'.

Yeah - as I've mentioned before, I only noticed PEM a couple of years after onset, after my symptoms had improved somewhat. I wouldn't first hear the term "PEM" until decades later.

They [BPSers] will pretend the "boom and bust" is the same but of course it isn't, it's merely describing the outcome of fighting PEM, not the mechanism, and simply giving it false attributions. And they usually frame it as "post-exercise fatigue", the pleasant sensation that follows physical exercise in healthy people. Showing they have no idea what they're talking about.

How does the BPS crowd explain PEM following mental exertion? What would "boom and bust" even mean in relation to mental activity? Would they recommend Graded-Concentration Therapy (GCT)?

(I'm not denying that mental activity can cause PEM. I'm questioning the notion that a patient's brain can somehow become deconditioned due to "disuse.")

 

[Snow Leopard]

How does the BPS crowd explain PEM following mental exertion?

PEM following mental exertion increases their belief that it is psychosomatic, because there aren't many other plausible causes.

But on that note, I don't get PEM in the rest of my body following mental exertion - only mental PEM symptoms following mental exertion.

 

[rvallee]

I was wondering how long it would take for the opinion-havers to feel the need to loudly proclaim their opinion. Turns out discussing symptoms from a patient perspective is the straw that breaks the camel's back. Even though everything here aligns with many papers already published, many who restricted to positive patients, it's just a more thorough evaluation that removes the external observer bias. No, medicine cannot possibly be about symptoms. Symptoms are for patients and nurses. Physicians deal with disease and if the disease is rejected then so can the symptoms. At least in the worldview of opinion-havers.



See, he doesn't want to be the bad buy, he just has to. Look what you made him do. By existing. You maniacs. I have zero idea what a "non-social-justice-oriented issue" is or why it matters to use those words in a particular order for... reasons, I assume.

Of course this person would have absolutely no objection to every one of the flaws he is huffing about if a study aligned with his biases and prejudices. Yes, illness is a subjective experience, but NO, the person experiencing it cannot say anything about it. And we know all about questionnaire-based evidence: it's only good if it validates commonly held biases and prejudices. Then it is the literal word of the creator of all things. Unless it gets revealed to have been less than reliable, then it's still right, because people just prefer that outcome and it must just be.



And as it often goes, it's personal biases amplified. See, it didn't happen to him, he struggled through but he did push through and if he can then anyone can, that's a law of the universe, or something.



So, TIL I learned that "long" means more than one year. Somehow. I don't think the dictionary people are on board with that but this opinion-haver says so nevertheless.

And now the LC folks are discovering our BPS overlords:



Notable "ME expert" Michael Sharpe, utterly puzzled by the basic features of a disease, sorry, an illness, he is an "expert" in. Well, not a recognized expert, after all he is but "one doctor" who says stuff. But also a "leading researcher". The quantum researcher, who both knows all and nothing depending on who asks.

 

[Forbin]

That said, 'long-covid' doesn't technically exist yet; as 'long' is reserved for symptoms lasting for over a year.

Well, that's good news. My cardiologist seems to think that "Long QT syndrome" refers to a QT interval longer than half a second. I'll tell him it has to be longer than a year.

 

[rvallee]

Well, that's good news. My cardiologist seems to think that "Long QT syndrome" refers to a QT interval longer than half a second. I'll tell him it has to be longer than a year.

Apparently he's also an annoying hack downplaying the pandemic too so not much surprising he's making stuff up. Of course he'll never reply but obviously it's not a thing, many people asked for sources. No such definition of "long". Anyone who feels confident making stuff up like that can be dismissed entirely, zero integrity.

There is a huge correlation to people who downplay the pandemic and those who dismiss Long Covid. Notice how most of the ME deniers at least initially were on the wrong side of the issue. Horton made a big deal of pretending to be outraged at early doubters when he was very vocally one for the first few months. And Gerada being anti-mask. Wessely only sees in terms of his imaginary mass hysteria and downplays it too. These are people who value their intuition above everything else. If they don't believe it's not true. Full stop.

There is a strain, a special kind of ignorance, that belies the kind of people who love psychosomatic explanations. They share a lot with common Internet trolls. They pretty much use the same arguments for the same reasons. That's always a sign of being on the wrong side of history but if they had the capacity to be on the right side of things they would know better. Basically there is a pandemic of Dunning-Kruger.

 

[rvallee]

The real perils of Internet activism:



One of the authors of the paper, the Davis in the thread title.

Unsurprisingly, exact same trolls, and somehow, professors, who harass us. Actual harassment, not criticism of basic factual errors.

(If tweet doesn't load it's because the account was made private, it says: "For those of you following along at home, #LongCovid has been politicized by men who, for some reason, are extremely threatened by other people being sick. Some are anti-lockdowners claiming that it was made up to extend the pandemic. Others have their own wild reasons So in addition to being sick & trying to advocate, we're targeted by these folks. Hence the (hopefully temporary) locked account")

 

[Jim001]

Is anyone else a little surprised to see the mast cell related charts not showing more prevalence? I'm looking at the anaphylaxis and allergy charts. They're pretty flat. I dont know what the prevalence of mast cell disorder is in the ME population but I would think the majority experience it to some degree, whereas in LC it appears to be very low.

 

[Jonathan Edwards]

And I would say that the crucial element in this paper, and why it reflects reality much more accurately, is the involvement of patients throughout.

It seems to me that this kind of study is the sort of thing that we should have had for ME many years ago. And given that it can be done relatively cheaply, I don't understand why it hasn't been

I would be more cautious about the validity of a study like this. Having looked at the 'Body Politic' site I think we have to consider to what extent this will be a biased sample in all sorts of ways. This is why I think DecodeME should steer well clear of international recruitment because the only chance of a vlid result is ensuring the samples as representatives possible of a population based cohort.

I would worry that this sort for study is what seeds ideas like 'ME is commoner in high achievers and perfectionists' or that it is associated with various ill-defined syndromes, based on case series from physicians and psychiatrists.

The data are of some interest but crucially the paper fails to indicate exactly how the recruitment process worked - how wide it would have gone and how much it was likely to have been affected by inevitable biases. People getting better are less likely to have answered so the curves will be distorted.

Basically you cannot do meaningful biomedical research with this sort of sampling. It is too likely to lead astray. That is not to say that it may not tell us some useful things, about what is missing for instance.

 

[Hoopoe]

There seems to be a cruel bias in medicine against illnesses like ME/CFS and long covid. They're underfunded and neglected so they struggle to produce the high quality research that is needed to gain wider credibility. The not so reliable research can easily reinforce negative views against the illness and leads to harsh criticism. Sure it would have been better if this was a random sample, but realistically how would you conduct such a study when long covid is so neglected and things like patient registers probably don't exist yet? Or when most patients cannot prove they had covid because initially the tests were reserved for hospitalized patients?

In a situation of general neglect and disbelief, realistically the pioneers bringing attention to a new problem will be groups of people united by something its members have in common. So not a representative group.

I'm commenting on what I've seen on social media, not on Jonathan's post, although the latter is the reason I wanted to express this.

 

[Snow Leopard]

I would be more cautious about the validity of a study like this.

This study is only intended to be of "suggestive" quality. The primary purpose is to attract attention and justification for funding higher quality studies.

If the medical research community did their job and initiated prospective population based studies from the start of the pandemic to study long term post-viral outcomes*, this patient-driven survey would never have been needed.

(*A study I might add that I have been demanding for years for the purpose of quantifying disease burden - of course I had limited success - the only CDC researchers that were interested, no longer worked in the field)

 

[Hoopoe]

I was about to add that it must also have been a shock to get long covid and experience not only a serious uncontrollable illness but also encounter indifference and a healthcare system that is unprepared. The priority must have been to draw attention to what was happening rather than publish flawless research.

 

[rvallee]

I would be more cautious about the validity of a study like this. Having looked at the 'Body Politic' site I think we have to consider to what extent this will be a biased sample in all sorts of ways. This is why I think DecodeME should steer well clear of international recruitment because the only chance of a vlid result is ensuring the samples as representatives possible of a population based cohort.

I would worry that this sort for study is what seeds ideas like 'ME is commoner in high achievers and perfectionists' or that it is associated with various ill-defined syndromes, based on case series from physicians and psychiatrists.

The data are of some interest but crucially the paper fails to indicate exactly how the recruitment process worked - how wide it would have gone and how much it was likely to have been affected by inevitable biases. People getting better are less likely to have answered so the curves will be distorted.

Basically you cannot do meaningful biomedical research with this sort of sampling. It is too likely to lead astray. That is not to say that it may not tell us some useful things, about what is missing for instance.

This study is by far the most accurate depiction of the illness I have seen, in terms of capturing the whole of the experience, despite being incomplete. At least as a starting point, let's be clear about what it is, it is a mapping of the illness experience, not a fully comprehensive study of the biology, physiology and epidemiology.

It is focused on illness, not disease, because we know nothing at all about the disease and so this is the best that can realistically be done. It is better by an order of magnitude, if not more, to anything ever published so far and better than everything coming out clinical psychology, combined. And it's not even a close race. At capturing the illness and its course, anyway. Something medicine doesn't really do well, or much at all.

If it's bad by the standards of medicine, maybe those standards aren't really worth all that much. Look where they got us. We've had decades of absolute failure from those principles so if something does a better job by doing differently from those standards, maybe it says more about the standards than about a deviation from them.

I would not do a biomedical study out of this sample either. But that's not what it's about. This is about the illness and the symptoms, something medicine pays no attention to, something it turns out only patients can actually do. All of this complexity, all of this, rendered into meaninglessness under the label of fatigue and some ridiculous tropes about perfectionism. This is what the usual standards of medicine gave us. What an incredible failure.

I want medicine to be better and that means criticizing the hell out of it, even when it's uncomfortable. But this study is so much better than anything produced before, whatever this says about what came before or how things are normally done.

 

[Amw66]

This study is by far the most accurate depiction of the illness I have seen, in terms of capturing the whole of the experience, despite being incomplete. At least as a starting point, let's be clear about what it is, it is a mapping of the illness experience, not a fully comprehensive study of the biology, physiology and epidemiology.

It is focused on illness, not disease, because we know nothing at all about the disease and so this is the best that can realistically be done. It is better by an order of magnitude, if not more, to anything ever published so far and better than everything coming out clinical psychology, combined. And it's not even a close race. At capturing the illness and its course, anyway. Something medicine doesn't really do well, or much at all.

If it's bad by the standards of medicine, maybe those standards aren't really worth all that much. Look where they got us. We've had decades of absolute failure from those principles so if something does a better job by doing differently from those standards, maybe it says more about the standards than about a deviation from them.

I would not do a biomedical study out of this sample either. But that's not what it's about. This is about the illness and the symptoms, something medicine pays no attention to, something it turns out only patients can actually do. All of this complexity, all of this, rendered into meaninglessness under the label of fatigue and some ridiculous tropes about perfectionism. This is what the usual standards of medicine gave us. What an incredible failure.

I want medicine to be better and that means criticizing the hell out of it, even when it's uncomfortable. But this study is so much better than anything produced before, whatever this says about what came before or how things are normally done.

This

 

[Jonathan Edwards]

This study is by far the most accurate depiction of the illness I have seen, in terms of capturing the whole of the experience, despite being incomplete.

But, with respect, we do not know that and it probably isn't.
Each panel seems to show an average time profile and that is not the reality. The reality is each individual case - some might go up and some down. Note that relapses and remissions seems have disappeared completely from the plots.

As usual I look at this through the lens of rheumatoid arthritis (RA). In my lifetime there was one study rather like this of the time course of the disease, which hoped to be representative. It was run by the very assiduous Dr Mary Corbett and continued for twenty years. Sadly, it made no contribution to the progress that we made with understanding the disease. Why? Because every physician involved in the disease already knew the histories of about 500 individual cases. Lumping them together seemed to have the stamp of being quantitative but that was not actually what was needed and turned out to be skewed hopelessly by predictable things like loss to follow up.

For RA the plot for 'vision' would be a tiny streak at the bottom. But this would represent the very few patients with devastating complications like scleromalacia perforans.

I could continue, but this is vey unlikely to be an accurate way to delineate individual patient experience - the way to do that is for a physician to sit down and listen a hundred times. I got fascinated by RA as a student and did that and I never needed to do more in order to know what I needed to do in the lab to explain things. Numbers do not necessarily give an accurate picture. Where you need numbers, like genetic and disease burden studies it is imperative to collect them in a reliable way.