Is a formal campaign against Long Covid underway?

[Booble]

@Booble -- @hapl808 -- I understand your sentiments, but I'm of the belief there are going to be a lot of long-haulers, and the sheer numbers will dictate that this is not some kind of superficial psychological phenomonen. It's already being given a lot of credence by some of the leading media outlets, and I think it will likely garner more and more attention as the implications of so many long-haulers becomes more and more clear.

Let's hope so, Wayne!

 

[Diwi9]

@Wayne - I err on the side of positive too, but some good points are being brought up here. We know that a percentage of long-haulers are going to recover, which is wonderful. A certain set of post-viral folks who recover go on social media to sell snake oil and postive-thinking remedies for an illness phenomena they were *lucky* to escape...how many long-haulers are going to turn their backs publicly on the Long Covid community to sell such content? Some of these folks can be high profile and do a lot of damage, for example Prof. Paul Garner.

 

[Booble]

Here's the thing, those not experiencing it hear the symptoms and they say to themselves, "What a bunch of wusses. I'm tired too. My muscles hurt sometimes too. I get run down too. My head feels achy sometimes too. My memory isn't what it used to be too. I get IBS too. My heart rate sometimes is erratic too. I wish I could stay in bed too......" and so on and so on and so on.

 

[Diwi9]

Here's the thing, those not experiencing it hear the symptoms and they say to themselves, "What a bunch of wusses. I'm tired too. My muscles hurt sometimes too. I get run down too. My head feels achy sometimes too. My memory isn't what it used to be too. I get IBS too. My heart rate sometimes is erratic too. I wish I could stay in bed too......" and so on and so on and so on.

This paper just came out...read some of the quotes. If a percentage of people within the medical system join our ranks and speak up, just maybe there will be more open minds?
https://onlinelibrary.wiley.com/doi...hbMhoxzJLFksdHkhpHHVUOn2ESV2RGIq-r3Xg9OofbitU

 

[nerd]

As someone that's GP trained, I know what an absolute nightmare it is when a patient comes to you with 35 symptoms and it's completely overwhelming. I think I'm very aware of that and she always sounds like she's busy, stressed and wants to get off the phone.

It wasn’t an active prejudice, but in the back of my mind I hadn’t thought about it… a number of us on the group have said how ashamed we are of some of the attitudes we’ve had towards people, and lack of empathy… This concept of being irritated by patients when they’re not really pleased when something comes back normal… Hopefully it will make me a better and more empathetic doctor at the end.

I've never looked for comfort or reassurance from doctors. As a scientist, I know how important completion and methodology is for problem-oriented solution finding. I expected doctors would understand this and just do their job. This means diagnose until the problem is completely defined. And it's not like everything would come back negative. Most of my initiatives turned out with some positive diagnoses. And still, I would often get exactly this attitude from doctors. That they "feel" overwhelmed by my case, so it must be my problem, in my head or whatever narrative allows them to send me away.

 

[bensmith]

I think another issue too is the vast majority of long haulers are mild and will recover. Thars what im seeing. My long covid group is the outlier and i am certainly and outlier there.

I know others have mentioned recovery, but most witj long haul just dont get that sick. I get a little winded up the stairs, and that is long haul.

 

[BrightCandle]

I think another issue too is the vast majority of long haulers are mild and will recover. Thars what im seeing.

Seeing the same. Some of them were fairly mildly impacted for 6-9 months and recovering. It is the same pattern with PVCS to be fair, something like 80% just recover. It is once you go past that first year that seems to make it much less likely to recover. Out of the back of SARS the Chinese published a number of papers on the ME/CFS sufferers the condition had left behind and while a few did recover after that initial first year the grand majority are still sick 15 odd years later. 10% of those that contradicted SARS now have ME/CFS, but initially 50% of them "long hauled". Covid19 is less impactful and showing lower numbers initially with lasting symptoms but I would bet on it having a similar 80% recovery rate.

 

[nerd]

I think another issue too is the vast majority of long haulers are mild and will recover.

If I assume something similar as with CFS/ME in general, these mild cases don't really recover just like that. They might find ways to compensate for their mild issues, to improve themselves with broad vitamin supplements, so that it doesn't bear as much anymore. They have to keep going on and can't accept yet that their old self has to remain in their past. All you need to do is eat healthily and do sports - that's the common message in public media. It's a comforting message because anyone can eat healthy food and do sports. Yes, we really live in a society where everyone can achieve anything. What a perfect world. You just need to keep going, and going, and going, until these mild things have become so severe that you can't keep going anymore. But it will take years until we know if this also applies to COVID-19 post-viral syndromes.

 

[wingate]

@Diwi9, if you feel up to it, maybe you could write a response or letter to the editor rebutting some of the inaccuracies in the articles?

I couldn't read the wsj article because it was behind a paywall, but I did read the article in Stat, which had a lot problems, many of which @nerd addressed. It would do Gaffney well to talk to his Harvard colleagues at the OMF center there and see how they respond to his opinions.

In contrast to these mis-informed articles, I do think there has been a lot of reporting about long-term consequences of COVID (there was the one about patients developing psychosis earlier this week in the NYT, there were editorials in the NYT by the women leading Body Politic, there was the recent article in vice, and of course Ed Yong has covered COVID and its effects in detail (much to Mr. Gaffney's distress)).

I think we have to hope that the NIH investments into long-COVID as well as the voices of all the medical professionals who have been struggling with long COVID will put to rest some of Gaffney and company's claims.

 

[Rufous McKinney]

What a bunch of wusses. I'm tired too. My muscles hurt sometimes too. I get run down too. My head feels achy sometimes too. My memory isn't what it used to be too. I get IBS too. My heart rate sometimes is erratic too. I wish I could stay in bed too......" and so on and so on and so on.

ugh

So- these folks ....are clueless.

So they wish they could just stay in bed? So on their Saturday, they'd just stay in bed?

My daughter relishes her muscles aching. After she works out, she tells me how wonderful it feels.

Really?

Her body works.

Guess whose isn't?

 

[Booble]

ugh

So- these folks ....are clueless.

So they wish they could just stay in bed? So on their Saturday, they'd just stay in bed?

My daughter relishes her muscles aching. After she works out, she tells me how wonderful it feels.

Really?

Her body works.

Guess whose isn't?

It's frustrating, isn't it? People have a hard time opening their minds to the possibility that it's not the same thing as what they experience.

 

[Booble]

Seeing the same. Some of them were fairly mildly impacted for 6-9 months and recovering. It is the same pattern with PVCS to be fair, something like 80% just recover. It is once you go past that first year that seems to make it much less likely to recover. Out of the back of SARS the Chinese published a number of papers on the ME/CFS sufferers the condition had left behind and while a few did recover after that initial first year the grand majority are still sick 15 odd years later. 10% of those that contradicted SARS now have ME/CFS, but initially 50% of them "long hauled". Covid19 is less impactful and showing lower numbers initially with lasting symptoms but I would bet on it having a similar 80% recovery rate.

Yes, they are already seeing that many of the early long haulers are slowly starting to recover.

Even pre-COVID, "cold" viruses have been getting worse and worse over the last 5-7 years. More and more people having colds that don't go away for several months and come and go often over a 6 month period.

My pre-COVID Dec 2019 (which couldn't be COVID because of the timing) virus was acute like a really, really bad cold in lower throat (and conjunctivitis) for all of December then HELL in January with loss of smell, loss of appetite, absolute deathly fatigue, and the weirdest kind of anxiety. February - March I was starting to recover at about 60% (?) of my normal crappy. April - June I was seemingly back to my normal crappy but in reality I was really about 85%-90%. Then suddenly at some point, I'm not sure when....I realized, hey, I feel normal again.

 

[Rufous McKinney]

And, this second article in the Wall Street Journal:

So who is the author of this opinion piece? Behind paywalls, I can't finish the article or determine who's opinion is this?

But elsewhere in social media, the author was described as- a medical student or intern.

Anyone know?

Heh, I 'd like to write an Opinion piece myself! And I have actual degrees, already.

 

[Rufous McKinney]

I know others have mentioned recovery, but most witj long haul just dont get that sick. I get a little winded up the stairs, and that is long haul.

Lets not lose sight of: our failure to grasp how we got so sick with the ME in the first place.

I've been sick with recurrent Eppstein Barr since I was 10 years old- 57 years at least.

If you wanna count food allergies and shot immune system, try 66 years.

Wanna know when I got HORRIFICALLY WORSE?

At 64.

I hope all long haulers recover, and sooner than later.

But how did the rest of us get our ME in the first place- Talk about Long Haul in my case.

the worsening shifted from a lifetime of...mild symptoms that one can overcome...with a break or a rest...to- this daily, limiting health tsunami.

 

[Rufous McKinney]

Yes, they are already seeing that many of the early long haulers are slowly starting to recover.

An issue just dawned on me...so how many COVID long haulers were able to- just rest or be sick and take the longer time maybe they needed to recover?

Versus- oh, go back to work 3 days later.

If they were laid off, or could not go into work as they do normally, perhaps they've benefited from Time and Conditions to Recover, that normally do not occur- entire countries have been semi shut down economically.... and socially due to COVID-19.

 

[Booble]

An issue just dawned on me...so how many COVID long haulers were able to- just rest or be sick and take the longer time maybe they needed to recover?

Versus- oh, go back to work 3 days later.

If they were laid off, or could not go into work as they do normally, perhaps they've benefited from Time and Conditions to Recover, that normally do not occur- entire countries have been semi shut down economically.... and socially due to COVID-19.

I think that's 100% correct.

 

[Diwi9]

@Diwi9, if you feel up to it, maybe you could write a response or letter to the editor rebutting some of the inaccuracies in the articles?

More competent critiques than I could offer have already been provided! Twitter is a-buzz.

 

[Diwi9]

Seeing the same. Some of them were fairly mildly impacted for 6-9 months and recovering. It is the same pattern with PVCS to be fair, something like 80% just recover. It is once you go past that first year that seems to make it much less likely to recover. Out of the back of SARS the Chinese published a number of papers on the ME/CFS sufferers the condition had left behind and while a few did recover after that initial first year the grand majority are still sick 15 odd years later. 10% of those that contradicted SARS now have ME/CFS, but initially 50% of them "long hauled". Covid19 is less impactful and showing lower numbers initially with lasting symptoms but I would bet on it having a similar 80% recovery rate.

Just going to mention that I first got hit in 2009, with partial recovery after 2011. Then, hit full-on ME/CFS by 2016 after a subsequent viral infection with 6+ months in bed before slow improvements. My guess is that a substantial amount of these Long Covid folks that "recover" will find themselves worse off in the future after another viral hit.

 

[Diwi9]

.[/QUOTE]

So who is the author of this opinion piece? Behind paywalls, I can't finish the article or determine who's opinion is this?

But elsewhere in social media, the author was described as- a medical student or intern.

Anyone know?

Heh, I 'd like to write an Opinion piece myself! And I have actual degrees, already.

He's a Psychiatry Resident out of McMaster University in Canada. There has been substantial scrutiny of his credentials and lack of experience to provide his opinion online...but WSJ still published.

 

[nerd]

He's a Psychiatry Resident out of McMaster University in Canada. There has been substantial scrutiny of his credentials and lack of experience to provide his opinion online...but WSJ still published.

I've seen the same thing regarding Ivermectin in the NYT. Even worse, the author wasn't even remotely associated with science or medicine. In Germany, at least we have a relatively neutral but yet state-oriented public media, so they basically only report such things as part of their investigative and satire formats. I think it's important that no specific financial interests are affected by the reporting. WSJ and NYT are political instruments from my perspective. Private media in Germany is as well. They determine the public opinion. If there is sufficient interest in neglecting long haulers, they will continue this campaign.