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

[bensmith]

I started with the same and after i didnt work moved on to more aggressive approach.

 

[Judee]

Ahhh...that might be the difference.

 

[bensmith]

I dont think so, they took like one niacin pill and they started seeing improvement enough to stop looking for ways to improve. That obv doesnt work for most of us.

if i could take trugen and start to feel better enough i prob wouldnt take all these meds. Its just luck they prob wete going to get better anywayZ

 

[Rufous McKinney]

We still need to consider that ME seems to land on about 1-2% of the populatoin. So maybe only 1-2% of the long haulers, end up with actual persistent non-recovery.

And while some people maybe got severe quickly- there is the longer trajectory- I don't believe I had classic PEM during my decades of "mild" ME.

 

[YippeeKi YOW !!]

actual data would be nice

Yes. Why, yes, it would.

It's the issue I have with so many 'research' efforts. Most of them are anecdotal, and the participants are allowed, if not actually encouraged, to rate their own conditions whether physical or neuro-cog, as well as any recovery or worsening.

does this work for cancer research? questionaries about opinions?

Yeah. Uhhhh, no. Beyond a few limited research studies relating to recovering from the often devastating effects of chemo, quite a few of which are strong mimics of some ME factors, no tests done in the same modality would be taken seriously.

 

[YippeeKi YOW !!]

Temporary me basically. Dunno
Why i became me
And they recovered.

I thought you were posting in these threads well before the COVID outbreak and your subsequent infection?

Cause that might explain it .....

 

[YippeeKi YOW !!]

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

.....

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

I'm with @Martin aka paused||M.E. on this one. More power to them, and rock on !!!!

 

[YippeeKi YOW !!]

We still need to consider that ME seems to land on about 1-2% of the populatoin. So maybe only 1-2% of the long haulers, end up with actual persistent non-recovery.

Extremely good point, and cogent !!!!

 

[bensmith]

@YippeeKi YOW !! no i was first wave covid, or 2nd i guess. April 2020.

 

[PisForPerseverance]

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.

That's actually very depressing even though I feel guilty for feeling that. But it is survival. The focus on long covid is garnering awareness and validation for ME, medical education, as well as indirect and supposedly direct research money. If that's in jeapardy of losing momentum due to most or even almost all of long covid people not fitting with ME anymore, it's really sad and depressing. Whatever benefits happened so far are good and much better than nothing. But if the momentum can continue, it would make such a difference.

I don't want anyone else to suffer with ME ideally, so if could put a wish into a wishing well for an outcome it would be that there's not a huge influx people's with their health destroyed, but we get all the benefits regardless. Sigh. .

 

[PisForPerseverance]

We still need to consider that ME seems to land on about 1-2% of the populatoin. So maybe only 1-2% of the long haulers, end up with actual persistent non-recovery.

And while some people maybe got severe quickly- there is the longer trajectory- I don't believe I had classic PEM during my decades of "mild" ME.

But isn't it something like 1-2% of people with covid are getting long covid? Maybe it's more. At that point, it would be 1-2% of the 1-2%. Unless it's estimated to be a bigger percentage of covid infected getting long covid.

Even if we were comparing the percentage of people who get long covid from covid (regardless of turning into ME or not), to the percentage of ME in the population, and I've seen that talked about, I dont think it's really comparing apples to apples.

In this modern global pandemic, people are protecting themselves from infection in ways that we don't with most other infections. Who gets infected in the first place depends on many factors. How much protection people have from getting infected is based on who does preventative measures and how much preventative measures they do, how much exposure you have, health status, age.

Access to and desire to use preventative measures, as well as exposure, depend on country, socioeconomic status within the country, job, health status, family responsibility, political ideology, and other stuff. I think each infection has differences in who gets it due to multiple factors and the characteristics of the disease, but a pandemic seems especially unique in how some people are much more protected than others. I guess same could be said for natural protection from other diseases by things like age.

Hmm... This is stuff that public health professions study. There's so much more to learn about post infectious diseases and who gets them for each infection. I did not think I'd be ever thinking about any of this.

 

[Rufous McKinney]

I don't want anyone else to suffer with ME ideally, so if could put a wish into the universe for an outcome it would be that there's not a huge influx people's with their health destroyed, but we get all the benefits regardless. Sigh. .

We occupy such a strange and conflicted place at the moment.

 

[Rufous McKinney]

But isn't it something like 1-2% of people with covid are getting long covid? Maybe it's more. At that point, it would be 1-2% of the 1-2%. Unless it's estimated to be a bigger percentage of covid infected getting long covid.

well, FINE THEN I have to actually look something up

This link:

https://www.webmd.com/lung/news/20210429/cdc-to-issue-guidelines-as-long-haul-covid-numbers-rise

SAYS: about 10% of COVID victims are showing long haul symptoms

Francis Collins is described as saying: (so I assume this is for the US only)

National Institutes of Health Director Francis Collins, MD, who also testified at the hearing, estimated as many as 3 million people could be left with chronic health problems after even mild COVID infections.

 

[PisForPerseverance]

well, FINE THEN I have to actually look something up

This link:

https://www.webmd.com/lung/news/20210429/cdc-to-issue-guidelines-as-long-haul-covid-numbers-rise

SAYS: about 10% of COVID victims are showing long haul symptoms

Francis Collins is described as saying: (so I assume this is for the US only)

National Institutes of Health Director Francis Collins, MD, who also testified at the hearing, estimated as many as 3 million people could be left with chronic health problems after even mild COVID infections.

Haha. So if it ends up being say 10% ME of that 10% long covid, then that would be 1% of those who got covid (in the US). I think.........

It's too early to say. We don't know what declining levels of pem means in that study yet because we can't see the full study. Declining doesn't mean stopping. And we don't know how representative that patient questionaire is of the whole long covid population.

The webmd article @Rufous McKinney posted talks about 3 people with long covid, and they each have debilitating fatigue still now. One is that senators daughter, one is a woman who testified at congress, and one is a woman on twitter raising awareness.

Reading it I felt some emotions. It's being confronted with what it might've been like to have had a message of human care from the world. I know that people with long covid are facing many of the same issues with being acknowledged, believed, and helped. I don't want to downplay how terrible that is. But there's also so much more support if we're talking overall. I mean it's a national crisis being taken seriously overall, the government and science and medicine working to help, clinics are being set up, journalism. It's definitely emotional to feel the difference. For me personally.

“We need to make sure we put our arms around them and bring answers and care to them,” said Rep. Anna Eshoo, a Democrat from California who is chairwoman of the Subcommittee on Health."

"Several members of Congress shared moving personal stories of loved ones or staffers who remained ill months after a COVID diagnosis.

Rep. Ann Kuster, a Democrat from New Hampshire, talked about her 34-year-old niece, a member of the U.S. Ski Team, who had COVID just over a year ago and “continues to struggle with everything, even the simplest activities of daily living” she said. “She has to choose between taking a shower or making dinner,” Kuster said. “I’m so proud of her for hanging in there.”

 

[Rufous McKinney]

this came out summarizing long haul in Wuhan china........

https://arstechnica.com/science/202...-covid-patients-in-wuhan-still-have-symptoms/