Long Covid in the media and social media 2023

Another excellent video on long Covid from Ed Yong and PBS. Discusses all the aspects that are important to patients.

 

https://twitter.com/user/status/1683142608061714433

 

Latest CDC data (July 20) show an increase in Long Covid, with about 1/4 having significant limitations. Unless I misremember it, a UK survey found a similar increase.



https://data.cdc.gov/NCHS/Post-COVID-Conditions/gsea-w83j

 

The business press continues to provide far better coverage than the health and medical press, which are almost entirely ignoring Long Covid. Simply stunning dereliction.


Meals skipped, lights shut off: Long COVID linked to severe financial strains, researchers say
https://www.marketwatch.com/story/m...re-financial-strains-researchers-say-30149eed

One in 10 adults with long COVID say they stopped working because of their symptoms, according to an Urban Institute study based on a survey conducted late last year. Only about six in 10 adults with long COVID reported having access to paid sick leave at work, compared with 68% of all workers, according to the study.

Over 40% of people with long COVID report having inadequate food for their household, the research shows, compared with 20% of adults who have had COVID-19 but do not have long COVID. Difficulties paying the rent or mortgage and utility bills were also far more common among people with long COVID than those without, the researchers found.
...
Lack of access to paid sick leave is driving many patients with long COVID to cut back on other activities so that they can continue working, which can also add to financial strains if people need to pay for child care or other services, researchers say. One in four people with long COVID said they had cut back on nonwork activities such as errands or chores at home so they could keep working, according to the Urban Institute report.​

Paid sick leave, the social safety net, won't cut it here. It's too many people. Even if most are only ill for weeks and months, there's a never-ending mass of them, disability systems would have to be at least 4-5x as large and there's no appetite for this. Effective treatments are the only way out. I'm not even sure if we can do mitigations to prevent infections anymore, giving up early was a one-way street.

 

The NIH has a community engagement account. A few days ago it posted a ridiculous "talk to your doctor about Long Covid for a treatment plan", and got massively criticized for spreading fiction.

And in response, their community engagement has been to hide replies. Not sure if they know that hidden replies can easily be viewed, but there it is.

https://twitter.com/user/status/1683926171518636032


Hidden replied can be viewed here. Also notable that they're admitting that even asymptomatic acute illness can lead to LC. Which destroys all the fiction around "fear" and "anxiety" and especially deconditioning after weeks of inactivity. And the CDC recently admitted that repeat infections can cause cumulative harm.

All very quietly, but we'll still hear all about it was spreading fear about it that causes Long Covid, and "lockdowns" and "immunity debt" and whatnot. What a mess this profession is.

 

MarketWatch Meals skipped, lights shut off: Long COVID linked to severe financial strains, researchers say

quote:

One in 10 adults with long COVID say they stopped working because of their symptoms, according to an Urban Institute study based on a survey conducted late last year. Only about six in 10 adults with long COVID reported having access to paid sick leave at work, compared with 68% of all workers, according to the study.

Over 40% of people with long COVID report having inadequate food for their household, the research shows, compared with 20% of adults who have had COVID-19 but do not have long COVID. Difficulties paying the rent or mortgage and utility bills were also far more common among people with long COVID than those without, the researchers found.

In long-COVID patient communities, it’s common to hear of “people who are losing their homes, unable to afford their next meal, having to move in with family members or friends in order to survive,” said Lisa McCorkell, a co-author of the study who is also living with long COVID.

 

This article in some Australian Sunday newspapers covers two people with Long Covid:

Archive link in case of paywall: https://archive.li/yTU5v

 

Well, the good thing is that this has blown up quite a bit. Many more replies and re-tweets have been added. It's actually emphasizing how their complete lack of urgency looks terrible. But I guess it only looks terrible if you're a patient waiting on them, so...

They don't seem to feel the need to actually say something about it. Not even a perfunctory "uh, message received, we're listening". Very poor community engagement. As in literally none whatsoever, one-way communication, and based on a blatant lie. I guess only some communities deserve to be engaged with.

 

The Urgent Need for Better Support and Treatment for Long COVID

https://www.expresshealthcaremgmt.c...people-where-is-the-urgency-to-treat-it/3139/

 

Opinion: Long Covid is debiltating to me and 65 million other people. Where is the urgency to treat it?

Without near-term treatment, those of us with long COVID are left to choose between doing nothing to alleviate our suffering and using anecdotes to make our own treatment decisions. We often resort to taking experimental medications or requesting drugs off label, which can pose safety risks and have mixed results in improving quality of life. It’s understandable why many people with long COVID want to try anything that might help, but some researchers and physicians are unwilling to prescribe treatments without robust trials supporting their effectiveness.

https://www.latimes.com/opinion/story/2023-07-31/long-covid-prevalence-research-treatments

 

Unfortunately, our country’s (lack of) response to long COVID is not surprising, as we have a dark history of neglecting chronic conditions, particularly those that are more common in women. For example, myalgic encephalomyelitis (sometimes referred to as chronic fatigue syndrome) has been dismissed and under-researched for decades. The lack of research has perpetuated a limited understanding of the underlying biology, a lack of diagnostic testing, a lack of respect for patient experiences and an embarrassing lack of action. Research funding is extremely low relative to the burden of the disease and its prevalence.​

Although this applies to every single country.

 

slight variations of this seems to be doing the rounds in many publications:
Brain fog and 200 other long-term COVID symptoms focus of new study: ‘A year or two late’

https://nypost.com/2023/07/31/200-long-term-covid-symptoms-focus-of-new-study/

eta:
"The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content."

 

Let's see if it can be followed through, maybe a bit of community pressure.

https://twitter.com/user/status/1687059769259900928

 

https://twitter.com/user/status/1687348874573492224


EDIT: Janet Dafoe: "The director of Dr Tedros’ office just called me. Ron and I spoke with her at length. She is lovely! We were able to tell her a lot of things and Ron offered to work with WHO like he did in the past and she was just really interested in all of it. Tedros will follow up soon"

 

That's what Ghebreyesus said several years ago. "We hear you" and stuff about reaching out. Did he, then? No, he did not. I do not trust the WHO as far as I can spit.

 

Worth trying again and putting some pressure, with the added "you said so last time". These things can be frustrating to make happen but once the door is open it becomes easier.

 

The Boston Globe: Actually, we can’t yet ‘ignore COVID’

Responses from readers to an article written by Dr Ashish Jha and which was titled “With a few basic steps, most of us can finally ignore COVID”

There were two pop-up windows for me, I closed one and refreshed the page afterwards and the other one went away too. But I think some people couldn't access a similar article in the past though.

 

At first glance I thought it odd that Janet would so openly discuss the talks she's having with the people at the WHO. But in this context it makes sense. Create some sort of public record of them promising things. Then if they back-track it's likely to cause at worst a bit of dissent, at best a whirlwind. I think as a community we've been poor at getting our grievances known to the public and actions like these serve us well.

 

I don't think we should get our hopes up, as far as I'm aware nothing came of this, International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

 

I'm not getting my hopes up with regards to anything ME-related. I do see a slowly shifting tide and I think all the little things we and the people that care for us do, have an impact on that. Where that'll lead, I don't know.