USA: The RECOVER Initiative - Long Covid research

Dakota15 said:
'To understand the role of the brain and the vagus, we will perform an MRI of the brain to see how the brain connects and also look at inflammation in the brain.”
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Hmm.., I thought we knew how the brain connects pretty much.
And I thought we knew there was no inflammation.
And I wasn't aware that POTS was a post-viral condition.
 
Dakota15 said:
“Specifically, we believe that both of these disorders occur when ‘emergency operation’ (fight or flight) is initiated by the periaqueductal gray region of the brain in response to trauma and the system fails to reset once the threat has passed and the person has survived the threat. In this project, we will also determine if the mode of operation is the same for long COVID and POTS or different.“
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Sighs

No. No it doesn't have anything to do with that.

And I long for the day when the words "fight or flight" are never mentioned again outside of laughing at dumb shit people used to believe. It's like the line in "I, robot" when someone describes the robots as being idle, "3 basic laws running". It's just cringe.
 
NIH Oral Interview: "Walter Koroshetz (2022)"

Koroshetz: "The big surprise was that people who were never in the hospital were also going to those clinics because they weren't getting better weeks or months after COVID. People on popular social media were getting together and coined this term "Long COVID" to describe the symptoms that people are having chronically. That is another big problem with COVID—these persistent symptoms. Congress then appropriated 1.15 billion dollars to NIH to try and understand that Long-COVID syndrome and also to look at the long-term effects of COVID. NHLBI is the lead of the RECOVER..there's 10,000 people already enrolled that we're studying, trying to understand what's wrong and what the biological nature of the problem is."

The RECOVER project is a major project, but it's a really important one. It's really close to NINDS because about ten years ago, Dr. Collins asked us to take over—with NIAID, Dr. Fauci's institute—research on what's called "myalgic encephalomyelitis/chronic fatigue syndrome (MECFS)." That is another condition that is very difficult to understand. No one really understands it.... We think that ME/CFS is very similar to long COVID. We don't know for sure, but the symptoms overlap almost perfectly'

'You really need the people who are suffering to inform what you're doing. Patients have been involved from the beginning in trying to understand what's most important to them and what we should target, and also in the design of the studies and the leadership of the RECOVER group. It's worked out really well.

'I would say that having worked in ME/CFS for a number of years and not really feeling like we're getting anywhere, I thought it was really important to do something that leaves no-stone-unturned in terms of delving into what this problem is. In ME/CFS, what you see is a lot of small studies that report something abnormal, but it's just that small group. It's hard to reproduce. What we didn't want to have in long COVID is a lot of small studies going down a path that's the wrong path, so we decided to do it in a much more comprehensive and large fashion. That took a lot of time to set up—but with record recruitment of 10,000 people within a year.'

'Right now, we'd really like to dig deep into the underpinnings of this problem and also try things to see if we can improve patients a lot.'

'I'm just hoping that we can find better treatments with Long COVID. That's my first thought now.'
 
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NIH Oral History: 'Michael Sneller (2021)'

Sneller: 'I was nearly certain that given the nature of the SARS-CoV-2 pandemic and the sheer number of people that were infected, there were going to be people who suffered long term effects of it, and it would be important to characterize those effects. We started thinking about it very early in the pandemic when most of the attention was still on how to treat the acute disease. The terms "long hauler" and "post COVID syndrome" didn't really exist.'

'..we knew nothing about what the long-term complications might be. It was possible to speculate what we might see based on other pandemics and other post-infectious illnesses, such as what was seen in Ebola virus survivors and what we might need to do.'

'This has taken pretty much my full time since last March, for the last year, to do this study. I think it's an important study.'
 
rvallee said:
There's really no doubt that POTS is common after, for example, COVID.
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We are all after Covid. Where is the evidence that POTS is even a definable syndrome, let alone that there has been more of it since Covid? Social media? The diagnosis of 'POTS' is thrown around by physicians everywhere. It isn't free of charge but there is no restriction on who is allowed to have it as far as I can see.
 
Jonathan Edwards said:
We are all after Covid. Where is the evidence that POTS is even a definable syndrome, let alone that there has been more of it since Covid? Social media? The diagnosis of 'POTS' is thrown around by physicians everywhere. It isn't free of charge but there is no restriction on who is allowed to have it as far as I can see.
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The evidence is in the testimony of people who report massive rises in heart rate on standing, dizzyness, tacycardia etc etc after a covid infection that is disabling and chronic.

Yes maybe tilt tables and over 30bpm heart rate rise might not be the best way to diagnose, yes maybe a lot of these self appointed gurus are talking out of their arses, but there is just as much evidence that POTS is a thing as ME/CFS.
 
V.R.T. said:
The evidence is in the testimony of people who report massive rises in heart rate on standing, dizzyness, tacycardia etc etc after a covid infection that is disabling and chronic.

Yes maybe tilt tables and over 30bpm heart rate rise might not be the best way to diagnose, yes maybe a lot of these self appointed gurus are talking out of their arses, but there is just as much evidence that POTS is a thing as ME/CFS.
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OI is definitely a thing. POTS as a concept is far more questionable.
 
V.R.T. said:
So here is a sickness behaviour that resolved. And in some people it seems to get stuck on like ME does.
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I don’t think OI is uncommon in general when sick. It seems to be quite bad for some of the pwME/CFS, myself included, but I’m also very sick so it might just come with the territory.

I know one person with primarily OI, and nothing else for years post covid. But only OI seems to be very uncommon.
 
V.R.T. said:
So here is a sickness behaviour that resolved. And in some people it seems to get stuck on like ME does.
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Yes, I think that is probably as near as we get to a simple analysis.
The problem that I see is that the narrative around 'POTS' keeps shifting and the people I have come across with diagnosis definitely do not just have post-viral sickness behaviour. They have an ongoing problem and I wasn't't aware of it being linked to infection in the way ME/CFS has been.
 
Jonathan Edwards said:
We are all after Covid. Where is the evidence that POTS is even a definable syndrome, let alone that there has been more of it since Covid? Social media? The diagnosis of 'POTS' is thrown around by physicians everywhere. It isn't free of charge but there is no restriction on who is allowed to have it as far as I can see.
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I don't know what kind of evidence you would want. Because it's the same for ME/CFS, there is clear causal pathway here that can be observed by simply paying attention.

I've read tens of thousands of posts from people with LC and most of the research since, and there's a lot more that supports it, it basically put the whole thing into clear focus. It's very obvious that there is a direct line of evidence here. Medical evidence is simply useless here, unfortunately, so I don't know what could convince you, but it's as convincing as the evidence for ME/CFS, which also can only be observed by paying attention to the whole. I noticed PEM in the first few months, and this is why it was obvious to me that a lot of LC was ME/CFS, and I was one of the first to be insistent about it. It's the same with POTS. I just pay attention a lot.

Plus I've had POTS. And the descriptions from patients are unmistakable. I wouldn't value the opinion of 99% of clinicians on this, so wouldn't put much weight into it.

It probably makes more sense as OI + excessive tachycardia, but when you've felt your heart jump to 150 by simply walking 2m and trying to brush your teeth, it's about as plain as day. As far as I'm concerned, the facts of what POTS is are as clear as they are for ME/CFS, it will just take years, if not decades, for medicine to catch up to it. It still hasn't caught up to a quarter of what I knew by May of 2020 so I'm not holding my breath here.
 
V.R.T. said:
So here is a sickness behaviour that resolved. And in some people it seems to get stuck on like ME does.
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POTS does seem to resolve by itself a lot more commonly than ME/CFS. I don't know of it lasting more than 2 years being a common thing.

It also seems to be caused by things like concussions and pregnancy, so clearly it's not strictly post-viral, but there is zero doubt that infections like COVID do lead to it.

In my case it wasn't after an infection either, as best I can tell it was straining a bit too hard stretching my legs when I started being able to move a bit more. But I've read far too many for whom it happened after a mild infection to make it obvious this is one trigger.
 
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Jonathan Edwards said:
We are all after Covid. Where is the evidence that POTS is even a definable syndrome, let alone that there has been more of it since Covid? Social media? The diagnosis of 'POTS' is thrown around by physicians everywhere. It isn't free of charge but there is no restriction on who is allowed to have it as far as I can see.
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While I agree that POTS may be a fuzzy concept, my personal experience is that extreme changes in heart rate and orthostatic intolerance are absolutely post viral for me.

I’ve experience multi-year ME/CFS like post viral illnesses three times in my life (ages 18/37/44). All began within a few weeks of recovery from a respiratory infection with the most recent having been caused by COVID.

All three illnesses triggered sudden rapid heart rate on standing (>120 bpm) and extreme difficulty being stationary while upright. After Covid, I essentially couldn’t stand without a dose of propranolol for a few months. In my case, it has always resolved over the course of several months. It’s usually one of the first symptoms to improve. Post-covid, it now returns with virtually any infection for a few weeks.

So, while I recognize one cannot generalize from their own symptoms, I am extremely confident it is a post-viral condition in my case.
 
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Stuart79 said:
So, while I recognize one cannot generalize from their own symptoms, I am extremely confident it is a post-viral condition in my case.
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Yes, but surely you have ME/CFS that includes POT, not POTSyndrome. For people with ME/CFS the problem will often be post-viral as we all agree. That cannot be used as evidence for the behaviour of some POTSyndrome that isn't ME/CFS, if there is such a thing. The discussion relates to the idea that there is another 'post-infective disease' called POTS. POTS is supposed to be some form of 'dysautonomia' but if it is just tachycardia and dizziness on standing as part of feeling terrible for whatever reason then that doesn't add up - the autonomic system is doing its usual job when you are feeling terrible.

OK I may seem to be labouring the point but my understanding is that the 'POTS' narrative that has been taken up by a large proportion of those taking a 'biomedical' line to ME/CFS is just as much a barrier to getting some decent science and answers as the BPS narrative. The narrative on Long Covid has been a dog's breakfast. If people had simply started from the fact that post-viral fatigue for many months that seems rather like ME/CFS has been a well-known phenomenon for at least half a century then maybe there might be less confusion.
 
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