ME/CFS Skeptic
Senior Member (Voting Rights)
Looks like a decent study and analysis to me. The Twitter thread is quite useful for understanding the paper.
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Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection, 2023, Thaweethai et al.
- Thread starter SNT Gatchaman
- Start date
Dx Revision Watch
Senior Member (Voting Rights)
CNN article reports:
https://edition.cnn.com/2023/05/25/health/long-covid-symptoms-definition/index.html
12 key symptoms define long Covid, new study shows, bringing treatments closer
By Brenda Goodman, CNN
Updated 12:51 PM EDT, Thu May 25, 2023
"...The researchers also learned that long Covid seems to be distinct from a condition called myalgic encephalitis/chronic fatigue syndrome or ME/CFS, which can also follow a viral illness.
"Horwitz said that although most people in the study who met the definition of ME/CFS also met the definition of long Covid, the converse wasn’t necessarily true. Among people who met the definition of long Covid, only about 10% to 20% would have also met the definition of ME/CFS, meaning it may be an important subset of patients but isn’t exactly the same..."
I think part of their definition of ME/CFS is problematic:
Either of the following:
a) Orthostatic intolerance (orthostatic tachycardia without orthostatic hypotension as obtained from the Active Standing Test)
OR
b) Reported brain fog and had a Neuro-QoL Cognition Score ≤40
So they seem to be restricting OI to POTS only, which is not normally required, and the cognitive dysfunction requires a specific score on a specific test which I'm not aware of being validated for ME/CFS.
Either of the following:
a) Orthostatic intolerance (orthostatic tachycardia without orthostatic hypotension as obtained from the Active Standing Test)
OR
b) Reported brain fog and had a Neuro-QoL Cognition Score ≤40
So they seem to be restricting OI to POTS only, which is not normally required, and the cognitive dysfunction requires a specific score on a specific test which I'm not aware of being validated for ME/CFS.
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Another factor that might be contributing to an apparently low proportion meeting ME criteria is sleep:
On this set of data, overall in the PASC group 85% have fatigue and 87% have PEM. The things that trip them up from being classed as ME/CFS are probably sleep, which is recorded here as 'sleep disturbance' and only 32%. That's not the same as unrefreshing sleep. I can't find whether that was recorded.
And, as in my previous post, they have restricted the definitions of brain fog which is 64% overall and the definition of OI.
On this set of data, overall in the PASC group 85% have fatigue and 87% have PEM. The things that trip them up from being classed as ME/CFS are probably sleep, which is recorded here as 'sleep disturbance' and only 32%. That's not the same as unrefreshing sleep. I can't find whether that was recorded.
And, as in my previous post, they have restricted the definitions of brain fog which is 64% overall and the definition of OI.
rvallee
Senior Member (Voting Rights)
Disappointing, to be honest. It will not change anything, that's for sure, meaning we are no closer to any treatment for anyone.
One infuriating thing is that the deniers and ideologues always play politics to the fullest, they know they can influence things the most by playing the game. Meanwhile the few research efforts that exist completely avoid anything to do with that, to the point where they completely ignore the context.
They seem to be working with the belief that people will do the right thing and truth will reveal itself if they completely avoid that there is a context at all. They don't seem to realize that millions of lives are at stake, running for 3 years for long haulers and so much longer for us. Or they don't care, frankly I can't even tell the difference and it comes out the same anyway. None of this will work against dirty politics that have decades and far, far more support. The world isn't just and there is a climate of bad faith within the profession that is fully content with keeping us buried alive and adding more to the pile.
They're basically behaving like this:
They bring a banana to a rolling competition. There is not nearly enough motivation and ability to counter all the bad faith here. A more well-known analogy would be bringing a knife to a gun fight, but really it doesn't even rise to the level of being willing to fight for anything. The whole system is just broken beyond repair.
One infuriating thing is that the deniers and ideologues always play politics to the fullest, they know they can influence things the most by playing the game. Meanwhile the few research efforts that exist completely avoid anything to do with that, to the point where they completely ignore the context.
They seem to be working with the belief that people will do the right thing and truth will reveal itself if they completely avoid that there is a context at all. They don't seem to realize that millions of lives are at stake, running for 3 years for long haulers and so much longer for us. Or they don't care, frankly I can't even tell the difference and it comes out the same anyway. None of this will work against dirty politics that have decades and far, far more support. The world isn't just and there is a climate of bad faith within the profession that is fully content with keeping us buried alive and adding more to the pile.
They're basically behaving like this:
They bring a banana to a rolling competition. There is not nearly enough motivation and ability to counter all the bad faith here. A more well-known analogy would be bringing a knife to a gun fight, but really it doesn't even rise to the level of being willing to fight for anything. The whole system is just broken beyond repair.
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cassava7
Senior Member (Voting Rights)
I disagree with your premise. The RECOVER initiative may be producing results too slowly, but such an epidemiological characterization of long Covid is absolutely necessary and was long awaited. As the WHO’s poor definition of long Covid has proved, the quality of a case definition substantially impacts the quality of studies, from basic biological research to clinical trials. This is very welcome work, even though it is late, and it should definitely help with designing studies that will, in fine, serve to identify treatments.
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rvallee
Senior Member (Voting Rights)
I agree that it should. I just don't think that it will. I'm done with false hope.
cassava7
Senior Member (Voting Rights)
It hinges on whether researchers will adopt this definition of long Covid. Since it is operational (it comes with an easy-to-use score) and is based on a large scale and well done epidemiological study from the NIH, I am inclined to think that researchers will prefer it to the WHO’s vague definition and make the switch. The fact that the article was published in JAMA won’t hurt, either, but I understand your doubts.
Peter T
Senior Member (Voting Rights)
Was it in a tweet or in comment somewhere by one of the authors? I thought I had seen it somewhere. However I am not on Twitter, so if it was a tweet I could only have seen it shared here.
It's quoted in the CNN article. I'll amend my post to make that clear.
https://www.s4me.info/threads/devel...023-thaweethai-et-al.33487/page-2#post-476819
Sorry to go on about this, but I think it's important that she's claiming only 10 to 20% of people with PASC fit ME/CFS criteria. I suspect that's because they have misinterpreted the IOM criteria:
Compare this with the definition they have used in this study
The requirements for OI and Cognitive problems are different and more restrictive. Edit: and they've added sleep disturbance.
Compare this with the definition they have used in this study
The requirements for OI and Cognitive problems are different and more restrictive. Edit: and they've added sleep disturbance.
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I agree @Trish. On that operationalised definition of ME/CFS, I wouldn't qualify as having ME/CFS. My sleep pattern is pretty normal, so I wouldn't tick the box for 'sleep disturbance', even though I usually wake up feeling as though I have been run over. And although on a bad day I qualify as having POTS in the morning, and sometimes later, at the other times I wouldn't.
I'd argue the above does qualify. The sleep process should result in waking up refreshed. It's not just about being unconscious, there's the various cycle components and "housekeeping" (eg autophagy and brain waste removal, making new synapses, moving short-term memories to long-term etc). If you don't wake refreshed then that's a failure of sleep and qualifies as sleep disturbance in my book.
From Coupled electrophysiological, hemodynamic, and cerebrospinal fluid oscillations in human sleep (2019, Science, PubMedCentral) —
You may be right about unrefreshing sleep being a sign of sleep disturbance, but that’s a scientific question. The patients were reporting their symptoms, and if they sleep a reasonable number of hours, or, as in some cases with ME, sleep longer hours, they are likely not to tick the box for disturbed sleep, even if they wake up feeling crap.
rvallee
Senior Member (Voting Rights)
Something about the definition they came up with bugs me, and I saw a comment on twitter that lit up what I was missing: they made a worse definition so that it could serve as a differentiable diagnosis. They are not the common features, they are the ones best able to differentiate from other diagnoses. Except it doesn't even do that since many long haulers don't meet the criteria, and many of us who never had COVID do.
In the media, it's all presented as "those are the main/defining/common symptoms of LC". Which this isn't. And of course they should have known this is how it would be presented, I'm sorry but it's part of the job to consider this. They came up with a worse definition, just so they can fit the clinical practice of differential diagnosis.
It's less informative, misleading in some regard even. And it doesn't actually work as a differential anyway. Which is basically like no bird with two stones.
And the more I look at it, the more obvious it becomes that the demand for a unique snowflake feature, to work with the differential diagnosis standard, is one of the biggest obstacles in the way. Because every illness isn't unique, and neither is every disease, if only temporarily because of the limitations of technology. It "works" by neglecting a whole lot of need out there, by simply filtering out for not being uniquely identifiable, more often than not not even a feature of the illness or the patient, merely a property of the physician's perspective of it based on current level of technology and how it's applied.
This made sense for a while, but it has clearly run its course to the point where it's causing more harm than good, at least as a dogma. It's still the main problem with COVID, can't tell the difference based on symptoms alone, but circumstances often make it so this is the only thing they have. So the entire model breaks down often, and there's no plan B. It's either unique or screw you. And literally this is how they do it: screw you, go away, not even recording what's happening to you, if you die you never even existed.
And I don't know how we change that single point of failure, it's too fundamental to clinical practice. When it works it works, it just fails a lot but there's no way to tell the difference, so it causes systemic blindness to failure. It leads to the standard practice of continuing to be wrong simply because they were wrong before and that sets failure as the standard.
Given the way it has been presented so far, we are all worse for this paper, pwME and pwLC alike. Which is basically the typical problem as it applies to us: it's failure, but it's standard, and standard is good and therefore not failure. Even though it is, but no one can tell the difference. Can't build a more perfect Catch-22 than this.
In the media, it's all presented as "those are the main/defining/common symptoms of LC". Which this isn't. And of course they should have known this is how it would be presented, I'm sorry but it's part of the job to consider this. They came up with a worse definition, just so they can fit the clinical practice of differential diagnosis.
It's less informative, misleading in some regard even. And it doesn't actually work as a differential anyway. Which is basically like no bird with two stones.
And the more I look at it, the more obvious it becomes that the demand for a unique snowflake feature, to work with the differential diagnosis standard, is one of the biggest obstacles in the way. Because every illness isn't unique, and neither is every disease, if only temporarily because of the limitations of technology. It "works" by neglecting a whole lot of need out there, by simply filtering out for not being uniquely identifiable, more often than not not even a feature of the illness or the patient, merely a property of the physician's perspective of it based on current level of technology and how it's applied.
This made sense for a while, but it has clearly run its course to the point where it's causing more harm than good, at least as a dogma. It's still the main problem with COVID, can't tell the difference based on symptoms alone, but circumstances often make it so this is the only thing they have. So the entire model breaks down often, and there's no plan B. It's either unique or screw you. And literally this is how they do it: screw you, go away, not even recording what's happening to you, if you die you never even existed.
And I don't know how we change that single point of failure, it's too fundamental to clinical practice. When it works it works, it just fails a lot but there's no way to tell the difference, so it causes systemic blindness to failure. It leads to the standard practice of continuing to be wrong simply because they were wrong before and that sets failure as the standard.
Given the way it has been presented so far, we are all worse for this paper, pwME and pwLC alike. Which is basically the typical problem as it applies to us: it's failure, but it's standard, and standard is good and therefore not failure. Even though it is, but no one can tell the difference. Can't build a more perfect Catch-22 than this.
rvallee
Senior Member (Voting Rights)
Trying to piece the various mentions of this I've seen, including from people involved in this study, they seem to claim that it isn't meant for clinical or research purposes, alluding to the fact that it was published "early" in order to get it out there. It remains unexplained what this "it" may be about, then.
It's supposed to be revised over time. I guess like the "living guidelines" we've heard about and didn't bother updating anything. And if this is trying to get something out quickly, something that won't change anything, I don't know what to expect here other than nothing at all.
Frankly it looks like either no one really knows what this is about, or can't tell us because it's none of our business, I guess. They had to spend the money. They spent it.
Sarah Jolley said:
It's supposed to be revised over time. I guess like the "living guidelines" we've heard about and didn't bother updating anything. And if this is trying to get something out quickly, something that won't change anything, I don't know what to expect here other than nothing at all.
Frankly it looks like either no one really knows what this is about, or can't tell us because it's none of our business, I guess. They had to spend the money. They spent it.
Tom Kindlon
Senior Member (Voting Rights)
- June 9, 2023
- recoverCOVID.org
The study and its findings have been shared among scientists, patients, caregivers, and community members around the world. As a result of this widespread interest, the below Q&A was developed to answer some of the most asked questions about this research and why it matters.
https://recovercovid.org/updates/recover-research-qa
Sly Saint
Senior Member (Voting Rights)
Merged thread
Challenges in Developing Long COVID Criteria — We must assess both frequency and severity - Jason
https://www.medpagetoday.com/opinion/second-opinions/105683
Challenges in Developing Long COVID Criteria — We must assess both frequency and severity - Jason
https://www.medpagetoday.com/opinion/second-opinions/105683
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