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

Posts moved from the long Covid discussion thread. This is a link to the preprint paper referred to in these tweets https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2

https://twitter.com/user/status/1343166471938203649

https://twitter.com/user/status/1343166477101391872

https://twitter.com/user/status/1343166483682222081

https://twitter.com/user/status/1343166486085591040

My guess is the there may be some people who haven’t recognised the pattern.

 

So long covid is mostly ME/CFS, at least in this sampled population.

I wouldn't have expected such a high percentage of PEM.

 

This is the pre-print that the figures above have been taken from.

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact

https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v1

 

This paper should have its own thread. Amazing work. Asking the right questions is far more important than delivering wrong answers in a sciencey style.

Had this work been done decades ago we wouldn't be in this mess. More of this.

 

I did

I saw it all in the LC forums. Told y'all

 

Just to give some perspective of just how much change is happening this year, how PEM is actually being discussed pertinently outside of the patient community or the very small confines our researchers are locked in, I checked PubMed for PEM and the very first article mentioning it is from 2006. It probably was discussed in some form before but this is the first appearance of the term as is.

https://pubmed.ncbi.nlm.nih.gov/?term=post-exertional+malaise

The graphic shows a significant increase in recent years, with most papers published in the last 5 and 2020 with the highest # of publications at 27 (28, I guess, with the Akrami one, the first that isn't explicitly about ME).

Because inevitably the BPS brigade will pretend to have always known about this despite never once using the term anywhere in their decades as "leading researchers", well, so far I can't find a single BPS paper using the term. I did find a few using the term but they actually talked about post-exercise fatigue and simply used the term incorrectly, like Peter D. White did in his recent impertinent comments on the NICE guidelines.

They 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.

Leonard Jason seems to be the #1 contributor. Fitting, coming from a pwME. #2 seems to be Twisk. Again, very fitting.

The so-called "experts" completely dismissed the main symptom of the disease they claimed to be the "leading researchers" in. And this group of sick but motivated people with chronic symptoms and PEM comes along and outdoes their decades of work in a single paper.

 

Notice anything that stands out? I notice that some of these, mainly PEM, brain fog, memory issues and sensorymotor symptoms follow a similar curve.

That seems to suggest they are closely related.

PEM and fatigue also stand out for being so prominent.

You can also see that cardiac/lung symptoms follow a similar curve, different from that of PEM.

 

Or they could be experiencing undiagnosed POTS?

 

The authors are clearly aware of the delayed nature of PEM so it appears unlikely that the high PEM prevalence could be mainly due to conflation of a more ordinary feeling of tiredness after exertion.

 

https://twitter.com/user/status/1343325760489213955

 

Gosh, I wish more ME studies would consider PEM in this much detail and relate PEM findings with overall symptom picture!
This study asks about:

• PEM after physical vs mental exertion
• how long after exertion it starts (since we still don't know if the immediate and delayed symptom exacerbation are the same thing or not)
• how long it lasts
• how people's overall symptom pictures differ depending on whether they still have PEM after 6 months, no longer have it, or never had it

There are more permutations I'd like to see looked at, e.g. how do people's overall symptom pictures differ depending on whether they have immediate or delayed PEM, but this long Covid study is on the right track and it's a little ironic that it's the ME research community who could learn something from them now.

 

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...

 

Absolutely. We've had researchers looking into mind-numbingly complex and sometimes poorly understood aspects of biology; this group has recorded and observed the things that they can record and observe with the simplest of tools.

Even though there are obvious problems around objectivity, this type of work still has real value, especially with sufficient numbers of participants.

 

From the paper:

"... those still experiencing symptoms at month 6 with no PEM (n = 707, 28.8%), fatigue was still the most common symptom."

I suspect many of those with 'no PEM' at month 6 had learned to stay within their energy envelope so as to not trigger PEM.

 

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

 

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.

And I mean literally just do the exact same thing, the only meaningful change would be a much wider spread over time and less reliability in recall for events that happened decades ago for some. I'm sure they would be happy to share the tools they used and the methodology.

But this is the model to follow. It's a step back, a bird's eye view resetting the entire basis of what we are dealing with. It was done once by Ramsey and then mostly forgotten. There has always been this heavy resistance at looking at symptoms, based on this refusal that any other symptom but fatigue are relevant. Maybe the resistance threshold has lowered enough with this. But who's got the funding for it is the issue. I would frankly not be confident simply leaving this in the hands of organizations like the NIH. They would do a fine job at execution, but the design would not be adequate.

Observation is the first step of the scientific method. It was overlooked for decades. Let's observe. Let's observe intensely and flow from that, as science normally does.

 

I would be really curious following this group, if they are the ones with the best odds of recovery. I think that's the plan, so that's good. I'd assume this is the exact same group that was left off the latest EBV study by Jason. Probably the mildest end of the disease but we won't know until we thoroughly check.

 

By the way the article page includes Tweets referencing this article near the bottom. Useful to see who discusses it and in what framing.