COVID-19 symptoms over time: comparing long-haulers to ME/CFS (Jason et al., 2021)

[Pyrrhus]

Gotta love Lenny Jason!

COVID-19 symptoms over time: comparing long-haulers to ME/CFS (Jason et al., 2021)
Leonard A. Jason, Mohammed F. Islam, Karl Conroy, Joseph Cotler, Chelsea Torres, Mady Johnson & Brianna Mabie
https://www.tandfonline.com/doi/abs/10.1080/21641846.2021.1922140

Excerpt:

Introduction
Our objective was to determine which symptoms among long-hauler COVID-19 patients change over time, and how their symptoms compare to another chronic illness group.

Methods
278 long-haulers completed two symptom questionnaires at one time point, with one recounting experiences during the first two weeks of their illness, an average of 21.7 weeks prior. We used a comparison group of 502 patients diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Participants completed a standardized symptom questionnaire and a list of additional CDC COVID-19 symptoms.

Results
Over time, the long-haulers reported an overall reduction of most symptoms including unrefreshing sleep and post-exertional malaise, but an intensification of neurocognitive symptoms. When compared to ME/CFS, the COVID-19 sample was initially more symptomatic for the immune and orthostatic domains but over time, the long-haulers evidenced significantly less severe symptoms than those with ME/CFS, except in the orthostatic domain. Among the COVID-19 long haulers, several neurocognitive symptoms got worse over time, whereas improvements occurred in most other areas.

Conclusions
These types of differential patterns of symptoms over time might contribute to helping better understand the pathophysiology of those reporting prolonged illness following COVID-19.

 

[ljimbo423]

Conclusions

These types of differential patterns of symptoms over time might contribute to helping better understand the pathophysiology of those reporting prolonged illness following COVID-19.

This sounds like it's worth following. Anything that might help better explain the cause(s) of prolonged illness in Covid 19 is good for them and us.

 

[Rufous McKinney]

This sounds like it's worth following. Anything that might help better explain the cause(s) of prolonged illness in Covid 19 is good for them and us.

It seems the neurocognitive aspects of this illness, and now long haul- don't get that much research attention.

If PEM is declining- they seem to largely be recovering then. THey are't becoming chronic, per this summary.

So if only neurocognitive is worsening- (and I'm not sure what they mean by that frankly)....well then they may not be new ME recruits.

 

[andyguitar]

I'd like to see some research about what immune complexes stay raised/lowered and compare those finding with me/cfs.

 

[Rufous McKinney]

I'd like to see some research about what immune complexes stay raised/lowered

actual data would be nice

does this work for cancer research? questionaries about opinions?

 

[andyguitar]

does this work for cancer research? questionaries about opinions?

Exactly. A lot more than symptom surveys are needed.

 

[ljimbo423]

It seems the neurocognitive aspects of this illness, and now long haul- don't get that much research attention.

I think it's important enough that it needs much more attention and research.

 

[wabi-sabi]

What objective tests do we have for neurocognitive symptoms?

 

[bensmith]

It seems the neurocognitive aspects of this illness, and now long haul- don't get that much research attention.

If PEM is declining- they seem to largely be recovering then. THey are't becoming chronic, per this summary.

So if only neurocognitive is worsening- (and I'm not sure what they mean by that frankly)....well then they may not be new ME recruits.

this is what im seeing. Temporary me basically. Dunno
Why i became me
And they recovered.

 

[PisForPerseverance]

I don't think declining levels of pem in many from first onset mean they'll definitely go away completely and then not be grouped with ME. We'll have to wait and see. I can't see any of the results so I don't know if any percentage said they weren't having post exertional malaise at all anymore. But this is a particular pattern. Very curious. If pem does go away for many, we'll probably largely fall from focus . Even if post infectious diseases are helped overall, it would really suck to fall from focus.

 

[bensmith]

Yes i am praying that all of their revoeries are temporary, or we are fucked.

i am almost certain they are recovering though, like many folks had bad bad me stuff, now are basically fine. Many are even working out again, working full time. It does not seem like me to me anymore. Almost every one of them.

 

[Martin aka paused||M.E.]

Yes i am praying that all of their revoeries are temporary, or we are fucked.

i am almost certain they are recovering though, like many folks had bad bad me stuff, now are basically fine. Many are even working out again, working full time. It does not seem like me to me anymore. Almost every one of them.

We are fucked in any case. So I wish them the very best

 

[bensmith]

Prob so, but no me. Lol. Im hoping every covid case turns to me so it cant be ignored.

 

[PisForPerseverance]

Yes i am praying that all of their revoeries are temporary, or we are fucked.

i am almost certain they are recovering though, like many folks had bad bad me stuff, now are basically fine. Many are even working out again, working full time. It does not seem like me to me anymore. Almost every one of them.

Ben which people are you talking about? On a fb group? I wouldn't generalize the experiences you're hearing about to all with long covid quite yet. But that's very interesting.

 

[bensmith]

in all my groups. Reddit long covid, long covid discord, slack, facebook. Slack is pretty much a ghost town at this point, at one time it was the biggest group. All my discord covid friends going to vegas.

ive been saying this for months, almost none are converting to me.

 

[PisForPerseverance]

in all my groups. Reddit long covid, long covid discord, slack, facebook.

ive been saying this for months, almost none are converting to me.

Oh wow. So do you find that many people are reporting continued loss of cognitive function and continued oi, and less pem?

 

[bensmith]

Dude honestly just healing. Most people are like 95 percent recovered or more. And many had pretty bad me for a time.

the few left don’t seem to have pem. Strangly even the ones who did initially.

 

[Boba]

@bensmith feel you man! Did you overexert at some point? Did you push through your symptoms? I had a crash after a long hike 2 months after my infection which didn’t help with my recovery.

 

[bensmith]

Word. Super short of it is that my family just abused me.

 

[Judee]

Dude honestly just healing. Most people are like 95 percent recovered or more. And many had pretty bad me for a time.

the few left don’t seem to have pem. Strangly even the ones who did initially.

Could it also be because their treatment protocols looked different than yours?

For one thing the recommendations of these doctors on FLCCC seem more conservative and cautious: https://covid19criticalcare.com/wp-...LCCC-Alliance-I-MASKplus-Protocol-ENGLISH.pdf

Have you shown your medication list to any on those groups to see if they are doing the same? And/or to get recommendations?